Ask the experts
Adenomyosis Advice Association - advice, support and information on adenomyosis
RSS

Categories

One Year On
Welcome
powered by

Adenomyosis Advice On-line Support Page

Ask the experts

Please feel free to ask any questions here, and  hopefully these will  be noted, responded to and looked into by clinicians who may visit the page as part of any research into the condition. Thank you. 

225 Comments to Ask the experts:

Comments RSS
Danielle on 05 October 2011 16:26
Further to the recent Study of Women's Health detailing the global impact of endometriosis,( http://www.endometriosisfoundation.org/gswh.php ) I would be very interested in really finding out how much adenomyosis affects women across the world. This information is so crucial in calculating how financially worthwhile quicker diagnosis and treatment would be for each country. I am struggling to find any such study that has been carried out as yet. Maybe a suitably qualified clinician may be able to enlighten us all please? Thank you
Reply to comment


Danielle Wright on 05 October 2011 16:47
I would like to help put together a similar video/film to talk about Adenomyosis as an educational tool. This is a recent one which has been developed for endometreosis. If any clinician has information/film/photograpy that they would like to see included in something such as this, please let me know. Thank you. Danielle Wright, Founder of Adenomyosis Advice Association Enc: Endometreosis Video: http://vimeo.com/20910143
Reply to comment
 
Pen on 15 June 2012 17:57
Hello Danielle. Thank you for putting this site together, it's been very helpful and reassuring for me. I have been diagnosed with adenomyosis and I'm struggling with it at the moment but about to start a course of tablets so we'll see what happens. It's hard to stay positive sometimes. I just wondered how you were getting on with the video? The one you have posted about Endometriosis was very informative. Thanks once again for your time putting this all together, it's really been a lifeline. Best wishes, Pen


parimala on 03 February 2012 06:25
is there any connection between adenomyosis and body pain. i also have malabsorption of vitamin b12. i want to know is there any connection between the three.
Reply to comment
 
Danielle Wright on 03 February 2012 11:36
Hi Parimala, welcome to the Adenomyosis Advice Association's On-Line Support page. Adenomyosis causes a variety of symptoms and pain is one which is detailed on our symptoms page. Vitamin B12 plays a very important role in the body and lack of this important vitamin does not help when the adenomyosis 'tumours' are constantly bleeding internally since the body's iron reserves are already being stressed by the extra blood loss. Ultimately the constant blood loss can cause anaemia, which in itself has its own set of symptoms. All these symptoms are connected since the body has to be balanced in order to work effectively. In my experience, it is worth ensuring the diet is boosted by the relevant foods which will deliver the essential vitamins and minerals, and it is definitely advisable to go for relevant testing for absorbtion, vitamin/iron levels and deficiencies. There is definitely a greater need for more research in this area. DW


TMK on 03 October 2012 14:51
I was recently diagnosed with adenomyosis. I noticed the symptoms came on about the time I increased my B-12 vitamin. I decreased the dosage of my B-12 and symptoms subsided. Does any one know a connection between B-12 vitamin and adenomyosis?


Danielle on 08 February 2012 17:24
Please feel free to blog about the Adenomyosis Advice Association. We are aiming for global adenomyosis awareness to help as many women as we can. Kind regards, Danielle
Reply to comment


Marlene on 01 March 2012 02:49
Hello, I was relieved to find your blog. I am recently diagnosed, 47 years young and terrified. So little real information, is a hysterectomy the best solution or not?? Should I continue to stick it out until menopause?
Reply to comment
 
Danielle Wright on 01 March 2012 15:14
Hi Marlene, I am glad you found the website. Your question is a good one and will be one that I am sure many women do and will ask themselves. From personal experience it is a matter of how severe your symptoms are and how life threatening/altering the condition has become. Looking at the condition generally, consider whether you really have tried every method of pain relief there is to date. Does your life go on hold for three out of four weeks per month because you cannot do the basic things - taking care of yourself at your usual pace, is it stopping you from walking, working, and have you now got secondary conditions from the constant bleeding - like anemia? Does your womb/the consolodated blood saturated tissue now weigh down on your spine - causing back ache/odema etc, are you constantly having to go to toilet since your bladder is impacted? with the mass? If the answer to these questions is yes, then it is time to take action. I am NOT a clinician, however, I am still in touch with my surgeon who fully endorses this website, as do many clinical and official organisations globally, and I would advise you in the first instance to seek medical advice and clarification from a qualified gynae specialist who knows YOU - not only your family general practitioner. Your body is different to mine and everyone elses, and you may have other conditions which are impacted or may be affected because of the condition. As to the question in relating to waiting until the menopause, determining when this is likely to happen is completely unpredictable and occurs at different times for every woman. At the end of the day it is your quality of life you must consider. The GOOD news is, if it is the right thing to do for you, your life will improve beyond 100% and I can certainly confirm that it has completely changed my life for the better. It is wonderful to feel at peace and to have my life back again. Wishing YOU all the very best health x Danielle x


GAYNOR NICHOLLS on 01 March 2012 12:42
I was diagnosed October 2010 with extensive Adenomyosis confirmed by an MRI Scan after months of suffering and being misdiagnosed lots. I had a total hysterectomy December 2010 at the age of 37. I had many miscarriages and stillborns that were full term but no-one ever investigated why. The symptoms were debilitating and after the opertion I felt fantastic no labour pains or back ache. I have now started the menopause and commenced on HRT however I have started getting similar pains to what I had before in my back and abdomen. The consultant did say that the Adenomyosis was close to my breast tissue and that the hysterectomy may help with the symptoms but he couldn't guarantee it. I have never had a follow up appointment as the consultant retired in January 2011. Is it possible that I could be experiencing this again? If so what will help with this? It's really getting me down and my heart goes out to anyone suffering this x
Reply to comment
 
Danielle Wright on 01 March 2012 15:27
Hi Gaynor. Thank you for your email. I am aware that adenomyoma legions can occur anywhere in the body. Adenomyosis is the name of the condition given specifically relating to the womb and surrounding tissue. I would suggest that you urgently get a referral to have at the very least a scan in the region where the pain is to diagnose what is really going on. Separately, why not telephone your previous surgeon's secretary/office, explain what is happening and get a name of an alternative surgeon and then visit your GP and get a re-referral to carry out some basic tests to see whether there are any other issues which were not detected before and go from there. At least that way you will know who you are being referred to and will have a little more control in how quickly things are moving. I wish you all the best and keep in touch and let me know how you get on. x Danielle x


Kate on 31 May 2012 22:26
Hi Danielle, Thanks so much for starting this site, I was diagnosed with this a year and a half ago and it's really hard to get any information. I'm getting married in the fall and hoping to try for a family immediately after. I'm 33, never had kids, NEVER had any problems with my period, no pain and always very normal periods. Out of no where about 2 years ago I had very light spotting about a week before my period so I went to my GYNO to figure out the problem, after every test in the book and laproscopic surgery, it was finally diagnosed. I was on Lupron for 4 months and have been on the pill since which hasn't been agreeing with me but supposedly it helps. After my second MRI they said my adeno was still in a very small localized area and hadn't really spread. My symptoms are confusing because any spotting issues I have are now after my period and could be due to the pill (beyaz). I'm so scared I'm not going to be able to conceive though and I'm wondering if anyone has been diagnosed with this and went on to have children? I'm hoping since it's not too bad at the moment perhaps I can be blessed with one or two before it gets worse. Thanks for any advice you can give.
Reply to comment


Danielle Wright on 01 June 2012 20:22
Hi Kate, I am glad you have found the site useful. Yes, adenomyosis can be present prior to and in fact subsides somewhat during pregnancy. This is because there is a good supply of hormones to oppose the estrogen (which in effect cancels out it's effects and halts its progression somewhat. If the area is localised and since your consultant is aware of the condition, you are in safe hands. Post pregnancy you will be able to keep a check on your symptoms and compare before and after scans etc if or as the condition progresses. As far as the spotting goes, the pill frequently causes symptoms of that nature. Once you have stopped taking any form of hormone, you will find that your cycle will probably become more normal again after three to six months. Best of luck with everything ongoing. Keep in touch x Danielle x
Reply to comment
 
Kate on 02 June 2012 17:37
Thank you so much for your response Danielle, this site is so helpful, I'll keep in touch and I'm sure I'll have more questions down the road. -Kate


ingrid on 12 June 2012 23:21
hi have done the Edenomyosis surgye and from that day am still in alot of pain please can u tell me why
Reply to comment
 
Danielle Wright on 13 June 2012 10:11
Hello Ingrid. With any kind of surgery there will be some pain for the following few days and weeks depending on where and what was operated on. I think your spelling was of adenomyosis but if you have had surgery for Endometriosis (the relative of adenomyosis in that the tissue shares some characteristics and operates with the monthly cycle and can spread anywhere in the body with the help of estrogen!) my advice would be: if you are in pain over and above what you were told to expect following surgery, you must seek medical attention either from your local general practitioner, your local hospital emergency department if necessary. With Adenomyosis surgery, the wound or areas that you have had surgery on will be very uncomfortable. You will have disruption with bowel and bladder movements for anything up to three months - and this is why it is VERY important to rest well but gently move about to regain your stamina. Your stitches/staples will/have be/en removed from 3-7 days post surgery. If you notice any swelling, pain, heat, temperature on your scar, or in your legs(anything that would indicate an infection or thrombosis) you MUST contact your doctor immediately. The pain relief you have been given may need reviewing and again this is a matter for your doctor. Finally, you may find it useful contacting the secretary to the surgeon that performed the surgery and ask them to pass a message to your surgeon for their advice. Please take care and keep in touch x Danielle x


andrea on 15 June 2012 12:13
Hello - It's great to find an informative website. I was told by my ob/gyn just over a year ago that I have adno (following extended periods/some pain and ultrasound investigation. I am 48 now and had 2 c/sections in the past. My symptoms are more irritating than anything else. I get pain the first couple of days of my period and then my period just drags on for the next 7 days with spotting only. I know that menopause can put an end to this but I can't work out if I need to keep an eye on it with yearly exams or just check it when the symptoms are getting worse? Doctors appointments only last about 10 minutes and it's so hard to get enough information.
Reply to comment
 
Danielle Wright on 16 June 2012 20:41
Hi Andrea,thank you for your question - which is a good one. It would benefit you to contact your gynaecologist via your doctor to arrange six or twelve monthly check ups just to see how and if things are progressing, since predicting when the menopause is likely to occur is not an exact science. Also with anemia, estrogen production and imbalances that adenomyosis creates - these can obviously lead to other serious issues, so it is best to ensure that you are in the best of health and have regular checks as a matter of course. Danielle x


lesley percy on 27 June 2012 12:57
I had a hyst for adeno last March and wish I had found this site before then. There is very little information/support for this condition, I also have endo and there is much more info availabel on this.
Reply to comment
 
Danielle on 27 June 2012 17:51
Hi Lesley, I am glad you have found the AAA website and agree that the world seems only now just becoming aware of adenomyosis. Please feel free to spread the word yourself in terms of the website and global petition, and help us help more women get a diagnosis -before their last and only option is having a hysterectomy! x Take care x Danielle x


Vicky on 27 June 2012 14:50
Hello, I am super excited to find this web site. I am 26 years old and have had fairly substantial gynecological symptoms since age 19. I have previous history of left a fallopian tube mass. Resulting in a salpingectomy and diagnosis of Endosalpingiosis at 21. My pain, heavy bleeding and aneamia have been increasing since. My second laparoscopy/ hystersocopy was performed a year ago. Which is when I received the diagnosis of Adenomyosis. I have recently married and am currently trying to conceive. Having stopped the pill I am struggling to cope with the pain of this condition. I also experience extremely painful ovulation. I am very interested to find out if there are any pain management avenues I am unaware of. Which are safe to use whilst trying to conceive. Also I would be interested to know if there are many other young women with this condition. Any light you can shed on either of these questions would be a massive help. Thank you in advance. Vicky
Reply to comment
 
Danielle on 27 June 2012 17:47
Hi Vicky, and thank you for your questions x To address the first issue of pain relief whilst trying to conceive, I would always err on the side of caution and stay away from any pain killers. A relaxing warm bath may help from time to time, as may gentle exercise, such as walking or swimming. Investing in a TENS machine might be a good idea, since this can also be used during labour. I always used to curl up on the sofa with a book and a hot water bottle in the early stages of the adeno as this did help somewhat. Reflexology is AMAZING and acupuncture is also very good. Finally, if you have a willing helper nearby, ask someone to give your lower back a gentle rub or if you are really lucky an all over massage. Regarding finding other young women with adenomyosis, there are sadly many members of the AAA who are very young. On our Facebook page I will post a message to say that we have a member who wishes to chat to other young women with the condition. You could hook up with someone there and chat in private x I am very glad you have found the AAA, and hope that we can all support you in some small way x Take care, Danielle x


Mary Gallatin on 08 July 2012 16:14
For years, I was diagnosed with uterine fibroids. Last year, my OB/GYN (at the time) became concerned that I had cancer. That test led to a diagnosis of an ovarian cyst and endometriosis on top of the fibroids. I had an ovary, tube and the endometriosis removed. The symptoms came back after the surgery in full force because the remaining and intreated issue was adenomyosis. It was on all the reports and yet all the doctors did not talk about it or address it. I needed a hysterectomy. So here I am having already paid for and recovered from surgery and feel as bad if not worse than before.
Reply to comment
 
Danielle Wright on 08 July 2012 21:49
Hello Mary and thank you for your message. Your story is sadly very common in that adenomyosis is often either diagnosed as fibroids and/or completely missed off the radar and then left untreated. Many association members have had surgery which has missed or not dealt with the adenomyosis, which is upsetting and also has worked out very expensive and has meant that so much time and energy has already been wasted on recovery etc, and 'recovery' is not what happens since the condition simply grumbles on. On the positive side, you are in a good position actually having a diagnosis of adenomyosis. It means that you can actively start looking for a surgeon who you can work with, to help you on your journey. Depending upon your location and budget, you will be able to find a suitably experienced surgeon. Techniques vary from country to country. A good place to start is your local general practitioner. Ask them to refer you to a gynae surgeon to discuss the matter further. Hysterectomy is no easy option, so be prepared for a lot of questions and soul searching. You might like to go through the questions here to make sure that you are ready http://www.adenomyosisadviceassociation.org/Questions-Pre-Surgery.html Nutritionally, there are also some things that can help eliminate the estrogen that the adenomyosis thrives on and creates. This website is very helpful http://www.livestrong.com/article/234882-anti-estrogenic-diet/ I hope the above links help somewhat and in the meantime, keep in touch and take care x Danielle x


Mary Gallatin on 08 July 2012 16:16
I forgot to ask is there an OB/GYM who specializes in or has experience with treating adenomyosis? Is there anything nutritionally that can help?
Reply to comment
 
danielle wright on 08 July 2012 21:50
Please note, this question has been responded to above.


lucie on 09 July 2012 20:24
Hi Firstly thank you for all the helpful advice on this page it has been really helpfull in me understanding this condition, yet I am still confused and scared as to what this means to my future. I have bee bleeding pretty much constantly since December and have sever pain in my pelvic region, after a ultrasound scan the results came back that I have possible adenomyosis, it has taken months for me to get this diagnosis and the only response that I got from my Gp today was that it is not a serious condition, which I am not sure if it is or not but my symptom are ruining the quality of my life and i feel terrible most of the time, it not only effects me but my partner also. I am only 27 years old and would desperately like to conceive in the future. If anyone could give me any advice on where to go from here I would be so grateful. Would an MRI scan be beneficial, or being referred to a specialist? What are the options for treatment as I have no children and would really like to be a mum sometime in the near future. I feel like the nhs has been terribly supportive and is very slow and unsympathetic to my condition. If anyone could give me any advice this would be gratefully received, thankyou x
Reply to comment
 
Danielle Wright on 10 July 2012 00:24
Hi Lucie and thank you for your post. In the first instance, you should ask your GP to refer you to a consultant gynaecologist in order to determine the severity of your adenomyosis. As with all conditions, adenomyosis can be less troublesome in some cases and therefore is less difficult to live with. This page may assist in discussing the current diagnosis techniques and what to look for http://www.adenomyosisadviceassociation.org/Diagnosis.html This link below shows you exactly what adenomyosis looks like as it is being scanned, the red and yellow colours indicate more blood flow leaking around and out of the 'tumours'. https://www.youtube.com/watch?v=Mgz4waDpC7A&feature=player_embedded This page indicates the current treatments available: http://www.adenomyosisadviceassociation.org/Treatments---Pain-Relief.html Of course, every case is treated differently, and if you are ever in doubt, opt for a second opinion. I do understand your frustrations, however, I can confirm that the NHS have been lending their support to the AAA awareness campaign, and you may even wish to mention the association to your GP and local hospital gynae department, so that they too can mention this website to more women and indeed colleagues in order to make more people aware of the condition and the symptoms. Wishing you all the best with your ongoing treatments on your journey ahead. x Danielle x


susan on 11 July 2012 18:28
Hi.. many thanks for this website! I am 53 and have this disease: it was diagnosed yesterday. 4 doctors diagnosed fibroids, 2 said its adon. I am scheduled to have a hysterectomy in 2 weeks. I am scared. I am unsure what to expect as far as menopausal symptoms are concerned, since I already have them, although really not severe. Obviously I need to ask my doctor but it has all been so fast.. HRT is out for me, as I have a deep vein thrombosis: its been a weird month. Can anyone tell me more about the symptoms that I can expect post-surgery? A big thank you from Austria. Susan
Reply to comment
 
Danielle Wright on 14 July 2012 21:49
Dear Susan, thank you for your message. I am glad that you now have some idea of what has been causing your symptoms. Since you are scheduled to have surgery in such a short space of time, please if you have not already, visit the 'Questions' page on the main AAA website. http://www.adenomyosisadviceassociation.org/Questions-Pre-Surgery.html Also, if you are not already a member, you may wish to visit and join as a member of the HysterSisters website and take a look at the advice thereafter relating managing surgical menopause. Obviously in your case, please ignore the hormone advice, but there is a good deal of information on the site that I am sure will help. This page particularly is a good starting point http://www.hystersisters.com/vb2/view_hoj.htm# The LIVESTRONG website is amazing, and I have found it one of the best sites in terms of advice and information. This page is really worth a read: http://www.livestrong.com/article/4372-need-managing-menopause/ In the meantime, please keep in touch, try and stay pain free and take care x Danielle x


susan on 15 July 2012 07:09
Hi Danielle..thanks very much. In all honesty, the more I read in Internet the more scared I get. I'm close to backing out, but have a high pressure job, and cant imagine having these problems when on the job. Scared.
Reply to comment
 
Danielle Wright on 16 July 2012 23:04
Hi Susan, trust me when I say - I completely understand where you are coming from in terms of your job. If you want to email me directly please do so at: info@adenomyosisadviceassociation.org - and I will be happy to advise you further in confidence x Take care x Danielle x


Nicole on 20 July 2012 00:38
Hi Danielle. Yesterday was the first time I ever heard the word Adenomyosis. To be completely honest, my first emotion was relief to finally have a concrete diagnosis. For the past 3 years I have been dealing with every single symptom of this condition, but treating them as seperate issues - heavy bleeding, migraines, exhaustion, adema, weight gain, mood swings, a dx of endometriosis and a 'bulky uterus' due to what they thought were fibroids and polyps - never imagining they were all connected. At one point I had a diagnosis of depression, a rx for cyclomax for the fibroids/endo, and a surgery date booked to remove the polyps and laser the endo (for the 2nd time in 5 years). This past winter, I found out I was severely anemic, which was the final straw for me - and I finally started to advocate for the services I needed in order to find out what was going on. I've been taking the heaviest dose of iron possible (to no avail due to the heavy bleeding) and feet frustrated on a daily basis. I can not believe how much this disease has affected every aspect of my life - from cutting down hours at work, my unpredictable mood with my kids/husband, the pain and emotional roller coaster that inevitably comes with dealing with a chronic condition...and the list goes on and on. I am now scheduled for a hysterectomy at the end of September and have a hopeful outlook for the first time in a long time. I was very grateful to find your website and to know that I am not alone in what feels like very foreign territory - THANK YOU.
Reply to comment
 
Michelle on 26 August 2012 02:47
WOW - you sound just like me! How old are you? I wonder if that means anything but I do wonder what my chances of beating this without a H are...


valerie on 24 July 2012 14:32
Wow, what a great website!!! I too have been diagnosed with adeno after many years of suffering and misdiagnosing. Even had the endoscopy and colonoscopy as I thought as did my doc that my symptom were gastro related. Of course they both came back normal. I was diagnosed just based on symptoms with endo then after finding another doc was diagnosed with the adeno. I opted, against the advise of the surgeon, to try the natural route first, so I tried the progesterone cream, that didn't seem to do anything, then I decided to try the progetrin pill, 3 months later, I just feel worse. So, I have an appt with a new doc on August 27. Don't want to wait that long but he comes high recommended and being that I am a 'new patient' I have to wait, forget that I am in pain, I have to wait for that 'new patient' opening. Makes me want to see someone else, but my track record of finding a good doc is not so good. I am Arizona (outside of phoenix) if anyone can recommend someone. Thanks for listening.
Reply to comment
 
Danielle Wright on 03 August 2012 07:22
Hi Valerie, I will put your question out there on the Facebook page since many of our association members are in the United States and may well know of a gynae specialist that they have had great support from (it's always a good idea to get a second opinion). All the best with the up and coming appointment. Keep in touch x Danielle x


susan on 25 July 2012 20:53
Hi Danielle--- thanks for your kind offer. I had a bad slump, where I read a lot of hysto-horror stories, but in the meantime I have calmed down a bit. I have another appointment with my surgeon to discuss my concerns, but in all honesty, when I look at the situation objectively, the operation is probably the best course for me, especially as I trust this doctor. So, August 1 is the day. Thanks for your kindness. Good wishes to everybody out there, and good luck! Susan
Reply to comment
 
Michelle on 26 August 2012 02:49
So, how are you feeling? It has been almost 4 weeks since your op. Where areyou on the relief scale? Recovery scale?


Ashley on 03 August 2012 18:19
Thank you for compiling the information on this site! I find it extremely helpful. I am 27 years old and have been dealing with severe endometriosis since my periods started and have had 5 laparoscopic surgeries for that. I luckily (although with great difficulty) was able to have a son, but ever since delivery have been bleeding nearly every day (for 19 months now). The cramping has become so severe as well. I have recently been diagnosed with adenomyosis as well (via an ultrasound and confirmed with an MRI)... Now I am trying to decide what to do next. Due to my age it is a very difficult decision to make on whether to have a hysterectomy, but things have just gotten so bad that I need to feel normal again. I am just a couple of months away from obtaining my PhD as well as have my toddler and husband to take care of, so I truly need my quality of life back to normal! It is so nice to have found this site that my husband and I can read though, it makes it easier for me to explain to him how I feel and what my options are... Thank you for the support this site offers!
Reply to comment
 
Danielle Wright on 06 August 2012 22:50
Hi Ashley x I am glad you have found the site and please do encourage your husband to read through the information provided. That is exactly what this website is here to do, help guide and support you both, to make sure that you can manage this condition together and take some of the pain and trauma away. If you need any further advice or support, you know where I am! Take care x Danielle x


Erica on 11 August 2012 09:53
Ashley, so comfprting to know that there is someone out there around my age with the same situation. I am only 30 and was just diagnosed 2 days ago, after 2 laproscopic endometreosis surgeries and one biopsy within the past 2 years. I too am struggling with the hysterectomy option because we too would love more children.. We do have praise God a healthy 5 year old son that we are very grateful for, but feel so helpless for not providing him with a sibling. So great to find this site Danielle. Thanks for your support already! I am trying to stay positive through just finding this information out in the past 2 days.


Amanda on 18 August 2012 17:17
Thank you for this site!! I was recently diagnosed with Adenomyosis, at the age of 36. I have 3 children and have been suffering from extremely heavy periods and spotting during mid-cycle. I have already had 2 previous surgeries, to remove many, many uterine polyps, and truly believed that was what the doctor would find again. I was shocked, when I received this diagnosis. Needless to say, I will be having a Vaginal Hysterectomy in September. I am very concerned about weight gain and emotional changes. The doctor will be leaving my ovaries, as long as everything looks ok.... So, menopausal symptoms shouldn't occur, I was told...
Reply to comment
 
Danielle Wright on 10 September 2012 20:47
Hi Amanda,sorry fpr the delay in responding to you x Please try and not worry about weight gain and emotional changes. Your weight will go down gradually and since you will keep your ovaries, menopause shouldn't occur. Expect a little hormonal 'shock' as your body adjusts, and even a few tears, but this is completely normal and should only last a little while. As with anything post surgery, if you have any major concerns - please speak to your doctor xx Hope all goes well during surgery and recovery. Take care, Danielle x


Catherine on 22 August 2012 21:50
Danielle, thanks for this site wonderful website. I have been diagnosed with Adenomyosis today after years of suffering and being diagnosed with fibroids by 4 Dr's in the last two years. Relieved to have a proper diagnosis now. I am 50 and have thought about now just waiting for menopause but was told about emobilisation instead of hysterectomy today. Has anyone had this type of surgery? I am told it will not cure the problem totally but will improve it by 50% and as I am close to menopause thought this would be a better option than a hysterectomy.
Reply to comment
 
Danielle Wright on 10 September 2012 21:02
Dear Catherine, good question! Women are often telling me that they have been told to go away and wait for menopause. The type of surgery you mention is popular since it is less invasive and does help many. It is your call though, if the pain is controlling your life and you are unable to work or do any physical actiity, you will need to consider other options and even ultimately hysterectomy.


Jennifer on 22 August 2012 22:50
Hi and thanks so much for this site! My ob/gyn recently told me she thinks I may have adenomyosis based on a trans-vaginal ultrasound. When I got home and read about it, it didn't seem to fit at all; if I hadn't seen the strange "pockets" on the u/s myself, I wouldn't believe it at all. Of course, many symptoms are related to the menstrual cycle, and since I am on the depo provera shot, I do not have a cycle. Here's the thing, though. I have started having terrible (debilitating, curled up in a ball on the bed) cramping at times after intercourse. Not always. There is no rhyme or reason to when it happens, but when it does, I am completely incapacitated for 10-15 mins at least. I can't find if this is a time when others have cramping. Do you know if this is common with adeno or should I be looking for another probable cause to this? Thanks so much!
Reply to comment
 
Danielle Wright on 10 September 2012 21:34
Dear Jennifer, the adenomyosis cramping can come on at ANY time, during intercourse, when simply sitting down, generally during periods, whilst sitting minding one's own business, after any exercise, whilst reaching up to get something off a shelf - ANY time basically and it really can catch you off guard x


Claire on 23 August 2012 22:16
Hi Danielle. I had never heard of adenomyosis until today. I've been suffering for years with pevic pain that goes into my lower back and down my thighs. I'm not doubled over in pain but feel constantly very tender - almost a burning ache which gets worse when I'm physically tired. My tummy is often bloated, I'm always tired and have frequent head-aches(lose alot of hair too which I never would have associated with any of this before). I also have a recurring dermoid cyst on my left ovary. After an internal examination today, I was told I have adenomyosis. She has booked me in for surgery in 2 weeks time to remove cyst and ovary but said she was reluctant to do hysterectomy. I just want my body to feel normal again and I don't know if I should have insisted on the hysterectomy. I'm 34, have 4 children and my family is complete. I've already had an op to remove cyst while pregnant. I'm afraid of having this operation (which i'm paying for) and then needing hysterectomy in the future anyway. Help! Can adenomyosis be diagnosed just from internal examination? Claire
Reply to comment
 
Danielle Wright on 10 September 2012 21:40
Hi Claire, although adeno is VERY difficult to spot, a colour doppler MRI scan is an effective method specialists use to identify the adeno areas. This link will show you what they are looking for and yes this can give them enough information to give you a diagnosis x The brighter areas are the adeno areas with a higher level of blood flow (since they constantly bleed) http://www.youtube.com/watch?v=Mgz4waDpC7A I hope this information helps you x Take care, Danielle x


Susan B.re on 25 August 2012 06:03
Hi Danielle, Thank you for this informative web site. I have not been diagnosed with Adenomyosis, I discovered this page after my Ob/Gyn recommended that I have a hysterectomy due to an enlarged uterus and heavy painful periods. I have had an ultrasound and it came back as normal yet I experience many of the symptoms linked to Adenomyosis. I had an Iron transfusion in March due to severe anemia and I was also found to be deficient in Zinc, Magnesium and B12, I am taking supplements and have noticed some improvement I am also using Progesterone cream which has helped slightly. Although in the last month or so I have had sudden severe cramping pains. So I guess I am wondering if I have undiagnosed Adenomyosis and if I do should I have a Hysterectomy, my Ob/Gyn said that if we knew I would begin menopause in the next few months it would be worth waiting (I am 50). I have to admit the thought of no more period problems is very appealing and I have spent the last few days thinking about how much my periods impact on my life. The actual bleeding lasts from 7-10 days with 2-3 days of heavy bleeding and flooding and clotting. Since using the progesterone the PMS symptoms prior to my period are better but I feel unwell and exhausted during and after some months I am lucky to get 1 good week. I think the question is will my quality of life improve enough to make the Hysterectomy worth while. Once again thank you.
Reply to comment
 
Danielle Wright on 10 September 2012 21:30
Dear Susan,YES it will is the short and sweet answer. Once the adenomyosis has been removed, you will REALLY notice a decrease in swelling all over your body, you will feel less tired month after month and your stamina will naturally come back following the surgery. Once the estrogen has drained from your body, you will feel clearer in your mind again, will WANT to move around and before you know it, you will have your mojo back and will be excited to do everything that you did before you became unwell. I really wish I could put into words how life changing the TAH was for me. It has literally given me back my life, and I never thought I would feel as great as I do! I really hope that you get the treatment you need as soon as possible x Take care, Danielle x


Kimberly on 29 August 2012 13:08
Yesterday my doctor told my I had adenomyosis. I'm 35 and have been dealing with issues since I was 17. It's been a long battle which I thought had ended two years ago with a diagnosis of Endometriosis. Before that: IBS, depression, fibromyaglia,in my head (which I think the medical term is hysteria). Everything was ok after switching from the pill to depo every 10 weeks. Then a new family doctor switched the depo to every 14 weeks. I suffered badly at the time and got all kinds of silly answers to my problems (listed above). With no real answers I had given up, that was until I stopped the depo completely to try for a baby. I was in constant pain, that got worse before my periods and after 2 years I wasn't pregnant. If I hadn't wanted to get pregnant there wouldn't have been any tests. After the infertility tests all came back normal, they did a laproscopy and found endrometriosis. I felt better for about 6 months but still wasn't pregnant and then the pain came back. I am now back on the depo every 10 weeks for a year now and the pain is gone but not the bowel and bladder issues. I was so relieved to finally have a diagnosis that explained everything all from a simple MRI. Today it has been replaced with horror. Pain I can deal with, the bowl and bladder problems I can deal with as well. The biggest complaint I have is the weight gain. As size 2, I gained 25 pounds in three weeks after stopping the depo. The weight is only in my belly all 25 pounds of it. I look 9 months pregnant. I went from a 26 inch waist to 40 inches. I can't buy clothes as nothing fits. Somehow I had it in my head that the depo would shrink everything happening around my uterus and all would go back to normal. I can't deal with people on the bus giving me their seat or people asking me when I due anymore. If the depo doesn't fix the issue is there anything that can?
Reply to comment
 
Danielle Wright on 10 September 2012 21:23
Hi Kimberly - Unfortunately the swelling in the ankles, feet, face, tummy - in fact anywhere is part and parcel of the condition. Your body is dealing or should I say, trying to deal with the estrogen overload - think...like just before a period when you might have some water retention. With adeno, your body is constantly pumping out estrogen via the adeno areas etc, which in turn makes the fat cells all over the body interact differently storing any carbs as fat which then sends the message to the brain to store water and your poor lymph nodes located throughout your body have a tough time trying hard to clear the estrogen etc out. Any kind of exercise or massage will be beneficial as will taking a bath and regularly helping your body clear the toxins through x Try not to get upset x Things WILL get better x


Marie on 10 September 2012 00:40
Hi Danielle I am very glad to have found your site but dismayed at the same time - no one appears to have mentioned what I consider to be my most severe symptom. I have always had painful periods and heavy blood loss. I remember fainting at school - aged 14 - due to my symptoms. Luckily for me when I began taking the pill my symptoms greatly reduced. I had a two year menstrual free period thanks to the pill. However when I was about 26 (I'm 32 now) I have had problems with break through bleeding. A usual pattern would be that I would take a brand of pill for 6-12 months and then the breakthrough bleeding would be all the time. For a full 12 month period when I was 29-30 I spotted everyday. By this point I had been referred to a Gyny who thought that I may have had a hormone imbalance (I didn’t) and found that I had cervical erosion which was treated using diathermy. I had an ultrasound scan which was normal. I as also advised that a mirena coil may reduce my symptoms this was in Dec 2010. I experienced infections following surgery and endured the coil until May 2011. I had constant contraction type pain and once again I bled every day. During this point I attempted to have intercourse with my partner and this was extremely painful. The pain was very deep and intense. My GP referred me back to the Gyny as she though I may have PID as I was in pain as she examined me. Anyway following the mirena being removed I began taking cilest and I began to experience a small percentage of spotting free days. The Gyny found that I had a further cervical erosion and I was treated for this in Nov 2011. The Gyny thought that this may have been causing me to have painful intercourse. Unfortunately this did not ease the continued pain I was in during sexual intercourse. The Gyny examined me and was concerned that my pain was coming from my womb and that it was fixed and retroverted - he commented that this may be due to endo or it could be normal for me. I underwent a laparoscopy in March 2012 and was diagnosed with mild endo. I almost cried when the Gyny told me that he did not think that he had treated the source of my pain and he was right. Since this time the pain during intercourse has not ceased and this part of my relationship has suffered. My Gyny told me that he thought that I was suffering from Adenomyosis. He commented that the only way of being absolutely sure was to remove a womb and inspect it. He felt that my pain and bleeding fitted the symptoms. He told me that the treatment options were to take the pill for four months at a time without a seven day break, to have a baby and option 3 a hysterectomy. I was and am still gutted. I have no active plans for children but want to keep my options open so a hysterectomy would be a final option. The treatment options he gave me do not work for me. I can cope with really bad pain and bleeding during periods. My main problem is the fact that I have an extremely limited sex life with my partner and that for 95% of the time sexual intercourse results in me experiencing a high level of pain. I am wondering if you were aware of any literature or treatment options in respect of this?
Reply to comment
 
Danielle Wright on 10 September 2012 21:16
Dear Marie, sadly pain is one of the indications that the adenomyosis is severe. As well as pain there is often slight bleeding also. This often means that couples tend to stop having intercourse whilst the condition is still untreated. The pain is indicating that there is damage occuring inside and is a natural warning sign. Listen to your body and think about what you want now, and don't put off the surgery for too long x This article may help a little x http://www.netdoctor.co.uk/sex_relationships/facts/painfulintercourse.htm It sounds like you are somehow coping with the pain, but it sounds like you are not actually enjoying your sex life anymore, you are simply dealing with discomfort on a daily basis which is not healthy at all. Relying on pain killers is not healthy or an option for long periods of time, since your liver has to process the chemicals that you are taking to fight the pain, and that in itself is unhealthy. I can assure you that post hysterectomy the pain does not return and that within time your body will heal and you will never experience the same level of discomfort again. Danielle x


Steph on 14 December 2012 14:13
Marie, Just wondering if you have made any decisions yet. I have the same feelings as you. I have a history of endometriosis and adenomyosis. I was on the pill for years until I got married and had two children. About 2 1/2 years after my last child, the symptoms started coming back. They first thought it was the endo but after not finding anything on the laparoscopy, and my symptoms, they said it was probably adenomyosis. I have tried some medications, but nothing has really helped. I just went back to the dr and after doing a physical exam, he said it was definitely in my uterus which meant adenomyosis. My only options are hormonal therapies, basically to get me by for a while, or hysterectomy. I am only 38 years old, and although I am not planning on having any more children, I still don't like the thought of a hysterectomy, but I don't like the hormonal therapies either. And my biggest problem is similar to yours, I can deal with the monthly pain, it is the pain with intercourse that is interfering with my life. I could care less about sex, but I want to keep my husband happy. But he is getting tired of the "hurry up cause it hurts" attitude. I really want to make the best decision, but I am just overwhelmed at the thought of it all. Any suggestions?


Jann on 15 September 2012 22:47
Hi Danielle and all ladies My gyno has suggested a mirena to help me cope with my adenomyosis but he said it would have to stay there for 5 years then I should be through menopause. I am 55 and it seems like menopause maybe years away. What are the negatives/positives associated with this device, 5 years is such a long time. I am still considering having my uterus out only and leaving my overies and cervix intact. Has anyone out there had success with the mirena?
Reply to comment
 
Danielle Wright on 16 September 2012 19:40
Dear Jann, thank you for your message x In answer to your first question, if you are able to take hormones safely and have no family history of problems etc, you may find the mirena and other hormonal coil types will help a little. The levels of hormone will not be as high as say in pregnancy (which appears to halt the progression of adeno for the duration) but you should feel some relief. Some women with adeno however, do report pain and discomfort, and this will depend upon individual cases and how far across the uterus the adeno has progressed. Hope that helps a little. Keep in touch x Danielle x


Jann on 17 September 2012 01:28
Thanks for your reply Danielle * When you say family history of problems do you mean stroke? My mum had a massive stroke when she was 47 and my sister has had lots of little strokes after turning 50, she is on medication now. My uterus is quite large measuring 9.3cm. Some days it feels like my uterus is right up under my ribs and it gets worse when I eat something. If I had the mirena would the heavy feeling in my stomach like being pregnant go away?


claire on 16 September 2012 14:43
hi danielle, i have never read a story so similar to mine before and often wondered if there was any1 out there who was going through what i am going through. For years, i have been suffering with almost all of the symptoms listed on ur page and have had it up to my eyes with the lack of diagnosis. I have been tested for just about everything and nothing showed up. My symptoms are so severe that I was put on suicide watch by my specialist. I was diagnosed over two years ago with coeliac disease and was told I would be a new person in 6 months. This didnt happen and more tests followed to no avail. I decided myself, not suggested by any doctor to go to a gyno and he diagnosed me with endometriosis, which I am currently undergoing treatment for, but on reading ur page I am certain I am in the 10% who suffer from both. I will go to my gp and gyno and ask them to test me. I would like to kno if symptoms like: *very sudden urges to urinate *severe pain before urination *loss of bladder control *urinating slightly without the urge to go *bowel effects like anal mucous are connected with adeno? (Thanks so much for this page, il keep u informed after my dr visits.)
Reply to comment
 
Danielle Wright on 16 September 2012 19:53
Hi Claire, I am very sorry to hear about your struggle with diagnosis, but I am very glad that you have found this website. In answer to your question, yes, as the condition progresses, you feel immense pressure on your bladder. When I saw a bladder specialist - I was told point blank to 'try not to go to toilet', which made me very upset. This was from a very well respected bladder specialist who had not heard of adenomyosis. This is the problem with this condition. Not enough clinicians dealing with bladder, bowel etc know about it, and how it changes the way the other organs function. I say this with confidence since - after my surgery, I no longer have the awful symptoms you describe - including irritable bowel etc. Best of luck with the tests next time, and keep in touch x Danielle


Diana Wroblewski on 16 September 2012 17:53
After a year of frustration with my gyno (she made me feel like I was making up my symptoms of pain and fatigue) and hysteroscopy, D&C, ultrasounds, blood work, colonoscopy, I finally asked my primary care physician for a referral for a second opinion. I cried when he believed me! Based on my symptoms, he diagnosed me, having seen hundreds of cases like mine in his career. I am scheduled for a hysterectomy in 2 weeks. I can't wait! My advice is get second or third opinions if you still hurt and cannot get relief.
Reply to comment
 
Danielle Wright on 16 September 2012 19:55
Dear Diana, -I completely agree and well done for posting your message. Thank goodness you found a physician who was experienced enough to spot it x Good luck preparing for your op, and if there is anything that you need help or support with, please do not hesitate to contact again x Danielle x


justin on 17 September 2012 13:53
Hi Danielle, thanks for this website. I am Australian and the husband of a 33 year old beautiful lady who only yesterday was diagnosed with adenomyosis. It is amazing how when someone gives you the answer all the pieces of the puzzle fit together. Our main concern at this stage is the lack of info regarding aden' and its' affect on fertility. We don't have children and we desperately want to have at least one soon, the big question is then: what are the chances of conceiving? Or, how much have our chances been diminished? thanks Justin
Reply to comment
 
Danielle Wright on 17 September 2012 22:55
Hi Justin,and thank you for your question. Infertility is a problem with adenomyosis since depending upon how far it has grown across the uterus will determine pretty much whether pregnancy and having a full term birth is possible. If pregnancy does happen, the hormones boost the body and somewhat mask the symptoms and to some extent halt the progression of the condition. To get a better idea for your particular situation, it might be an idea to ask the consultant for a full explanation of the condition's progress so far, and whether pregnancy is likely. For women who have a completely damaged uterus, if the ovaries are okay, there are of course other options - one of which is egg harvesting and of course there are other options like adoption. I hope that helps put things into perspective a bit, but if you have any further questions, please do not hesitate to ask. Kind regards, Danielle


lee on 17 September 2012 14:23
hello, I'm glad I found your site.I'm 32 and was told 2 years ago I had adenomyosis after going though 10 ten years of hell but finally I a result.But now the coil has failed and it was my last hope.Do I really have to have an hysterectomy or do I have more options.I know it sound strange as it is having a big impact on me in every way but Im not ready for it yet.Thank you lee
Reply to comment
 
danielle wright on 17 September 2012 23:03
Hi Lee. This is the hardest part. The coil often helps many but as in your case, when it simply does not make any difference to the progression you are either looking at having the adeno areas removed completely or a hysterectomy. Depending on your location - will depend what options will be available to you. The OSADA proceedure is available in the U.S. and globally the various forms of hysterectomy are available. The adenomyosis areas produce the hormones that are making the condition worse - catch 22. The only other option is to live with the pain and other symptoms, but to be honest with you there is only so much pain your body will tollerate before it makes you feel worse in other ways including emotionally x I am afraid there is no really easy option now, you have to think of YOU and look forward to a pain free life - so take your time and think about all your options x Take care x Danielle x


lee on 18 September 2012 20:11
Hi Danielle, thank you for your reply.You have given me more information then my own doctor and for that I am very greatfull.I don't have to go back to the doctors for two weeks and I am going to ask them to refer me to a specilist, as I have just found out that there is one in my area and I wasnt told by my doctor about it.It has took over ten years and im still fighting to get help.Will let you know how I get on .Lee


Anne on 26 September 2012 16:29
Hi Danielle, Your website and the comments from other sufferers has explained so much, Thank you. I always suffered heavy painful periods as a teenager and symptoms were relieved somewhat when I went on the pill. I married and came off the pill at 30yrs and within 6 months I was pregnant with my first child. By the age of 37 I had had 3 children and I breast fed them all, so periods weren't a problem. But oh boy did I suffer when my body returned to 'normal'! In 2001 I saw a gyny who didn't recommend any further investigation, but due to the extreme heaviness and pain of my periods recommended I have a TCRE. He told me my periods could stop within 2yrs, if not they would be greatly reduced, which they were. Unfortunately the excruciating pain during intercourse or pain accompanying a period where even passing urine was a nightmare didn't. Earlier this year(age 50) I asked to be referred again as the pain I was getting was now not just with intercourse and periods but with ovulation too. In fact the pain was so bad I found it hard to stand let alone shuffle to the toilet and the thought of this every 2 weeks just scared the hell out of me. In March I had an ultra scan and was told I had an enlarged womb...that was it. In June I saw the gyny and after an internal exam was told I had adeno, at last a diagnosis that made sense, but again no further investigation. I was put on a progesterone only pill 10mg for 3 months, the periods subsided to just spotting, but the heaviness when your about to start a period continued. I went back in beginning of September he has upped the pill to 20mg and said we can treble it. He has put me down for a hysterectomy (Dec) and I'm in a dilema as it's commom practice(UK) to remove the cervics aswell and I'm not sure about this. Also I seem to be doing better with double dosing the pill, so I don't know whether to persevere with the pill or have the op. Sorry it's so long winded, but not sure where to go with this one. Many Thanks Anne
Reply to comment
 
Danielle Wright on 28 September 2012 20:29
Hi Anne, personally speaking, you may want to investigate your likely/expected time of menopause - i.e. try and establish if you can when your mother or even grandmother started theirs if possible. This is obviously not an exact science, but if they began theirs in their early 50's, you may wish to continue on with the double strength hormone (since there are obviously recommended time spans for taking these hormones safely - i.e. usually a cap of five years or so - sometimes less). If you are quite a way off from menopause (more than five years) and you are in chronic pain etc you may wish to consider the operation instead. For me it was a no brainer being in my 30's and needing the operation as soon as possible. The cervix removal was a reassuring measure for me, in that it was one less thing to worry about in terms of cancer ongoing x The comparison for me before and after surgery is something that I cannot emphasise enough when I say, the surgery was life changing and for the best all round. I really hope that you can find a solution that suits you and your symptoms as soon as possible, but in the meantime, please do not hesitate to contact again as and when x Take care x Danielle


Anne on 30 November 2012 20:41
Hi Danielle, I was due to have the hysto 21st December, so rescheduled that to January....Christmas is a big event in this house!! I went back to my doctor who said I'd have to come of the pill to get a true reading of whether I was about/going through the menopause.He did give me a printout of the scan which shows my uterus as 12.3 x 6.7 x 5.7 is this large in the scale of things? Many Thanks Anne


lo on 27 September 2012 20:22
Hello, I was wondering if anyone tried alternative treatments such as , Dim and Calcuim -D Gulcarate and what was the affects of taking these supplements as I am considering these supplements.
Reply to comment
 
Danielle Wright on 28 September 2012 20:36
Hi Lo, I am happy to put your question on the main Facebook page and we can see what the feedback is. I have included a link here which you may find useful information. As with any natural or prescription medication, please read every ounce of information that you can and then discuss with your clinician to ensure that it is both safe for YOU to take and ensure that if you do try it, that you keep a diary of how you feel and monitor the effects x Danielle x ttp://www.livestrong.com/article/295519-nutritional-influences-on-estrogen-metabolism/


lesley on 01 October 2012 11:53
hi have read your article quite a few times now.i too have most of the symptoms listed.i dont have much heavy bleeding but my period pains were so bad.i had a ballloon ablation done six months ago,although pains stopped they have now came back again.ive been constantly bloated for about 4 months now,have had bloating on and off for 2 years.ive had scans and other tests done.doctor has now just sent me for a abdonimal and vaginal scan.the sonographer said she could see slight fibroid tissue.im at my wits end, one doctor told me i was fat,another one has told me to try a dairy free diet,or even a high fibre diet.ive put on weight,have gone upa dress size.ive got to make an appointment now for results of scan but was just wondering if you think my symptoms could be linked to this condition and would it be worth mentioning when i go back next week.there aslo sending me to a dietician aswell. i just dont think they know what to do with me know.my mood swings are getting worse even though i am on antidrepessant.im suffering really bad hot flushes,and i cant hold my wee in for long,last week i twice i leaked as couldnt get to toilet on time.im only 40.xx
Reply to comment
 
Danielle Wright on 01 October 2012 19:22
Hi Lesley x It never ceases to amaze me at how unsympathetic some of the clinicians appear to be and seem unaware of adenomyosis. As far as comments about being fat - that is completely unprofessional. Without having your weight monitored professionally and being referred to a dietician, comments like that are unhelpful and distressing - particularly when if you have adenomyosis - there is little that you can do to control the estrogen production which completely turns upside down the way your body processes food nutrients etc, and as for a dairy free diet - again, unless you have been tested for intollerances etc in relation to dairy products, this advice could indeed be harmful - particularly when calcium and dairy products have been proven for many years to positively establish and help control the female hormone cycle. OK, let's look at getting your next step organised. Firstly go ahead and get the results from this test, then get your doctor to refer you to get screened for adenomyosis. Ask for the colour doppler test to be carried out as illustrated here: http://ultrasound-videos.blogspot.co.uk/2011/03/adenomyosis-of-uterus.html They should be looking at the red and white areas which indicate haemorrage areas where the adenomyosis 'tumour' areas are constantly leaking. If this means him/her contacting the hospital whilst you are there to establish who that radiographer is - then so be it. You must be firm and explain that you wish to be screened for adenomyosis so that you can at least rule this condition out to enable you to get a final diagnosis more quickly. If you are going to see a dietician - this can only be a good thing. Ask them to help you with a diet plan to help with eliminating estrogen. No matter what the condition, estrogen and hormone imbalances control many/most of the symptoms that you describe. Please feel free to mention this website, and for the record your doctor should also test you for anemia and for iron store levels. The hot flushes do occur as adenomyosis progresses, although they also occur if the ovaries are not working correctly, and also if there is something not quite right with the pituitary gland. All these things should be tested or at least looked at. As mentioned before, please refer any one of your clinicians to this website, it is possible that they may have not seen adenomyosis symptoms before x Keep in touch, and try not to get too down - this is probably the most difficult and frustrating part, but if you can keep a step ahead mentally and help them help you - you are more likely to get a result sooner x Please keep in touch x Danielle x


lesley on 03 October 2012 19:21
hi danielle thankyou for your lovely reply,ive been back to docs today cause of my headaches and got ear infection,so feeling really low at moment,shes upped my depression tabs.i did mention this condition but she didnt really take much notice although she did say she had heard about it.anyway she has refered me to a gynocolgist so hope fully now just got to wait for appointment from him,will keep you posted and thanks again for your comments,its a lovely site and very intersting.xx
Reply to comment
 
Danielle Wright on 23 October 2012 20:01
Hi Lesley, I hope you are feeling a little better x I am very pleased that you have found the website and that it has been of use to you x Keep in touch with an update of how you are getting on. Take care, Danielle x


chamilton on 05 October 2012 16:56
hi danielle iv just been diagnosed so was hoping for some advice. iv been given the option of either a hysteroctomy or trying the merina coil first of all. if been doing a bit of research on line and have found some sites saying that any treatment apart from the hysterectomy will only be short-term and that inevitably the hysterectomy will probably be the only thing that will cure Adenomyosis. im 45 now but up until i had my wee late baby at 43 i didnt have any problems with periods even though i have an older daughter age 25 so all this has come as a bit of shock to me. i would be really interested in your thoughts. thanks.xx
Reply to comment
 
Danielle Wright on 06 October 2012 22:23
Hi- although I have responded to your mail privately with my thoughts, for the benefit of everyone reading your question here, the mirena is worth trying if your adenomyosis is not too severe. If the condition is extensive and covers the majority of the uterus, Zoladex is usually given to try and block the estrogen to bring on menopause symptoms. In truth only hysterectomy will remove the tumours and thereafter the estrogen production will slow and then cease and your body will then return to some element of normality x


Melanie on 09 October 2012 22:58
Hi Danielle, I am 35 and was diagnosed with Endometriosis in 2008 and Adenomyosis just this June, 2012. I have had pelvic pain for years, but it's especially worse when sitting. The pain is unbearable and travels. I have had 2 laprascopies and had my right ovary removed. I have been on continuous BC for years. Have had lupron injections and final treatment was a caudal epidural which triggered a whole host of other issues. I am going in for the consultation on Oct. 18th to discuss hysterectomy. I do not want to have the one ovary I have left removed because I am scared to death of going through menopause at 35. I am planning on just having my uterus out. My obgyn seems to believe that my endometriosis is mild and the adenomyosis could be what has been causing me hell for the last 4 years. From your experience will the adenomyosis resolve if I just have the uterus out? Will I go through any hormonal changes? As a side note ** I have uterine fibroids & pelvic congestion. I am only 110 lbs. but look a few months pregnant:( Thanks for any insight:)Also, are there any questions I should add to my long list of questions to ask my obgyn?
Reply to comment
 
Danielle Wright on 10 October 2012 21:28
Hi Melanie, yes once your uterus is removed the adenomyosis tumours will have gone so the estrogen production will diminish. You may experience a slight 'wobble' as the hormones re-adjust, but if your pituitary gland and ovaries are okay, you should re-establish a normal cycle once more. The only other questions you could ask is how advanced is the condition and are your ovaries okay. Always better to know the full story ahead of the surgery x Take care - keep in touch x Danielle x


Debbie on 12 October 2012 15:56
Hi! I'm glad I have found this site! I have suffered for years with painful periods. Was diagnosed with PCOS almost 6 years ago and have the Mirena coil fitted 3 years ago. I still bleed with the coil and the pain has been increasing over the last year/18 months. Had a laparoscopy in July for suspected endometriosis but only a minimal amount was found. My surgeon did say he noticed a "bulge" on my womb. Had a follow up appointment today and they now suspect adenomyosis and will be sending me for an MRI. I am 29, do not want children and cannot bear thinking about coping with this pain until menopause yet a my surgeon refuses to consider a hystrectomy........ Reading through the symptoms, adenomyosis seems the most obvious condition that I can be diagnosed with. I wondered if anyone else without children has this condition and what has been recommended for treatment or if a hysterectomy has ever been discussed?
Reply to comment
 
Danielle Wright on 17 October 2012 07:28
Hi Debbie, I know that we have corresponded privately since your message here - but for those only just visiting this page and reading your question, it is worth taking a look at the AAA Facebook page where (on the 13th October) many association members have indicated in answer to your question that they have had and have been diagnosed with the condition before they ever became pregnant. Thanks for getting in touch x Danielle x


Melanie on 18 October 2012 21:46
Hi Danielle, I saw my Obgyn today and I am going to schedule a laprascopic hysterectomy for Nov. based on my history of chronic pelvic pain which has interfered with my life dramatically.. work, social life, relationships..etc. She is leaving my ovary in tact. I do have Adenomyosis, prominent blood vessels/pelvic congestion and a retroverted uterus along with fibroids & Endometriosis. She wants me to stay on BC after surgery to keep my endometriosis which is mild at bay. I need to decide if I want to keep my cervix or remove it. May I ask what you did and is there any difference? I think my obgyn is leaning more towards removing it, but it's totally up to me....Thank you in advance.
Reply to comment
 
Danielle Wright on 19 October 2012 22:09
Hi Melanie. Thank your question. Firstly, I am glad that you can and will be keeping your ovary/ies. Your own natural hormones are of course the very best type! I trusted my surgeon. I was advised removal of the cervix was the safest option for me, and every woman has a separate set of circumstances that need to be considered and that includes looking back at the female family health records. There are so many horror stories out there, women saying how they have been affected either way, so I can in some way understand your question. I am a great believer in communication and being honest. If you are in a healthy normal relationship where your partner supports you emotionally, you will recover from the surgery whether you are keeping your cervix or not. Once the scars heal, you will be adenomyosis free, which is a relief in itself. The rest of your body, mind and spirit will recover, but give yourself time x The only other thing to remember is to have a regular smear/vault test - whatever you decide to do. Take care and keep in touch x Danielle x


Barb on 23 October 2012 06:40
I could just cry or jump for joy,it's taken months to figure out whats wrong with me.my last ultra sound last week said it showed ADENOMYOSIS.Finaly it is all coming together.been to so many tests,today a colonoscopy even because iam so bloated and the pain.All was good in that area.Iam having a total Hysterectomy on Nov 28th.I can't wait,this has been so draining on my whole family( not knowing what is really wrong,Thanks so much for this website.The light bulb came on today and i can relax a bit more knowing what iam dealing with.
Reply to comment
 
Danielle Wright on 23 October 2012 19:57
Hello, I am very pleased to hear that you have surgery planned for next month. If there is anything that you need help with over the next few months, please feel free to message again. Kind regards, Danielle x


Alana on 24 October 2012 04:54
I have had 3 surgeries so far - all for Endometriosis. I have had a Mirena for about 2 years in between surgery 2 and 3 which didnt really help me. However when I went for a pre surgery Ultra Sound, the radiographer mentioned Adenomyosis (first time I had heard of this). I had surgery number 3 hoping they would give me a hysterectomy (41 years old) as I had read and understood that the only real solution for Adeno is a hyterectomy. However, due to timing of surgeries they only completed another laparoscopy and no hysterectomy, which I was very unhappy about. I have all the symptoms of Adeno - including looking very pregnant, which makes me feel like my stomach is going to burst (I have that horrible full feeling even when I havent eaten). My periods consist of big blood clots and I am in pain the majority of the month. Doctors dont seem to know what the symptoms are for Adeno which I find very frustrating. I have been waiting for a follow up appointment with my surgeon which I finally have in 2 weeks time. This time I feel very prepared to discuss this with my surgeon, thanks to your website. My life is just about non existant due to the pain I am in which affects all parts of my body. I have gone on all sorts of diets to see if there are other reasons for my symptoms and have come up with nothing. One of my doctors told me, they cannot confirm you have Adeno unless they take out your uterus and cut it in half! Doctors dont seem to like doing hysterectomys anymore but I am hoping this time they will agree with me. Thanks again for your website.
Reply to comment


Rachel on 24 October 2012 09:44
Hi Danielle, reading your website has made me very emotional to realise that I have all the symptons. I have had a scan two weeks ago and this week the specialist has diagnosed adenomyosis and polyp. He is going to operate to remove the polyp and to do something else (not sure what) and to fit a coil. He said he wants to try this first rather than a hysterectomy straight away. My concern is that he said it may take 3 months to see if this procedure works or not and I don't think I can carry on feeling like this for another 3 months. (I have been bleeding continually for 8 wees, really really heavy with terrible muscle type clots). I am exhausted, not sleeping and can't walk up the stairs without getting out of breath. I am 47 and have an 8 year old daughter, so I need to feel better !! Do you think I should have insisted on a hysterectomy straight away? Thank you.
Reply to comment
 
Danielle Wright on 25 October 2012 21:35
Hi Rachel, personally speaking, I agree with you. I was in a similar position myself. The sticking plaster approach does not work and leaves you even more exhausted delaying the necessary outcome. The surgeon is only trying to ensure that he helps you do whatever he can to assist, however if you are breathless etc, you must urgently get a blood test done for anemia. Left untreated it is VERY dangerous. If you are not anemic yet have low iron stores, you need to ensure that you take a good multi-vitamin with the regular 14mg of iron to ensure you build up your reserves prior to surgery. If the adeno is extensive you will find (as I did) the coil incredibly painful to the point of fainting. Menopause varies from woman to woman, but you are still younger than the average woman to have her menopause, which is why I am guessing your surgeon is maybe hoping to delay the hysterectomy. You need to be better for your daughter and yourself, so the options are pretty slim. The adenomyosis is imparing your ability to have a normal productive life and you are in pain and are bleeding very heavily so it needs to be removed. You need to have a conversation with your surgeon again and be truthful and honest with him and tell him what you really want to do. Speak with his secretary and see whether you can have an urgent cancellation to see him. I wish you the very best of luck. Danielle x


Rachel on 30 October 2012 23:08
Hi Danielle, Thank you for your reply. Since I wrote last time, I have been admitted to A & E because I was so short of breath after climbing the stairs. After blood tests it was found that my haemoglobin was 6.5 which is well below the 11 it should be, so I have had 3 blood transfusions and an iron infusion. I saw my consultant while I was in hospital and we have decided that I should have a hysterectomy in two weeks time. Hopefully I am now on the road to recovery. Thanks Rachel


Susan on 29 October 2012 01:08
I was diagnosed with Adenomyosis about 7 years ago. During that time I have had most of the symptoms on this website. I was diagnosed with iron deficiency about four years ago. I was taking lots of ibuprofen for the pain and that gave me acid reflux for which I take medication for which makes my iron deficiency worse. The pain is really bad when I have my period and I pass clots frequently. My doctor said my uterus was definitely hugely enlarged and I am overweight by a huge amount, more recently I have experienced bad lower back pain during my period and sometimes after. I am 48 years old. My doctor does not want to do a hysterectomy. Can you tell me if going through menopause will get rid of all these symptoms. I really would like to see myself feel the way I did before the adenomyosis took over my body. I feel like it is an ongoing battle that cannot be won. Does anyone have any suggestions, besides go to a different doctor?
Reply to comment
 
Danielle Wright on 29 October 2012 14:17
Hi Susan,yes, menopause halts the estrogen which halts adenomyosis from growing. This is why it is essential to ALSO try to eliminate any artificial estrogens from your lifestyle - diet etc. A second opinion is often necessary re: hysterectomy. In the UK it is a requirement that your GP and Gynae surgeon both agree it is essential to have a hysterectomy. In age terms you are 4-5 years off menopause - and the time limit on safely taking hormone replacement therapy is five years. I suggest getting a second opinion and explaining how badly the condition is affecting your life. Keep in touch x Danielle x


Melanie on 30 October 2012 01:29
Hi Danielle, So it's official, I'm having a total hysterectomy! How long after your hysterectomy did you feel back to yourself? This last year has been so dreadful that I have not worked due to all the pain etc and I cannot wait to get back... This crippling Adenomyosis has stripped my independence, but not for long I hope-
Reply to comment
 
Danielle on 05 November 2012 23:34
Hi Melanie, in truth - I felt better the next day! No more dragging feelings, agony or distress. I had better colour in my skin, and could breathe more easily within a few days and the only thing that upset me a little was the hormonal 'shock' that is REALLY common apparently - where the body begins to adjust to the new blood flow etc. Yes, after about two months I felt more happy and three months later I was ready to go back to work. Six months on I was walking 3 miles per week, and feeling less tired in the evenings, and by a year, I was pretty much back to how I felt as a teenager! :) I say that, because that is how I feel now. I NEVER thought I would feel SO great and I have to say that I am eternally grateful to my surgeon and his team of nurses and anesthetists on the day that made me feel very safe and reassured. Without them I don't think I would be here now, since I do not know how much longer my heart could have coped with the edema and swelling etc that I had in my legs, arms, face etc and the anemia etc making it very hard to breathe and having palpitations just on laying down. x All that is in the past now though x I can only wish you a speedy treatment and recovery so that you too can build yourself back up to the person that you were not so very long ago x Thinking of you x Take care x Danielle x


Melissa on 05 November 2012 15:24
Hello Danielle. I am very pleased because finally I've found some site where I can get any type of health tips. I am a banker and I feel much stressed after getting back to my home. My friends suggest me to for massage. Should I go for massage? Please lead me in the right way. Thanks! 
Reply to comment


Kim N on 06 November 2012 21:56
Hi, I recently was led to this disease by a new ob/gyn after an ER visit. I am 41 with 2 children & finished childbearing. I have had extremely heavy periods with clots for many years- I had an ablation 1.5 years ago. I have also had very painful intercourse & painful, moody & excessive PMS symptoms for many years. The ablation did wonders for the bleeding, but not for anything else. I have noticed over the last 5 -6 months this connection of pain in the uteris with frequency & need of urinating. Also, some connection with constipation which has been a norm for me for many years. I noticed that when constipated the pain in uteris & a pain (severe) when having to urinate. I have about 16 of your symptoms listed. Doctor put me on antibiotic for 7 days then will do an MRI. I had a vaginal ultrasound that showed a fuzzy area. At this point I just want a hysterectomy. I really do not want to mess with hormones - I have never taken birth control pills in my younger years. Please provide some prospective. AND...thanks for this website! ~Kim N.
Reply to comment
 
Danielle Wright on 28 November 2012 21:57
Hi Kim, I hope that you have found the antibiotics helpful. You being 41 puts you some distance from your hormones naturally weakening and leading to menopause, so if you can deal with the symptoms as best as you can. Trust me I know it is not easy, but if you have adenomyosis and you have already decided that a hysterectomy is probably going to be the only option that you are prepared to take (which is very brave of you x) then you MUST discuss the options available to you. If you need more support, please feel free to contact me again by email directly x


dipika on 13 November 2012 07:00
hi i am 25 years old female, married since two years, recently i had been diagnosed with adenomyosis and endometriotic cysts, i had a laparoscopic surgery to remove those cysts. but what about adenomyosis is there no treatment for it? i desparately want to be pregnant, is pregnancy even possible with adenomyosis or should we go for surrogacy??? plz reply need help
Reply to comment
 
danielle wright on 19 November 2012 07:24
Hi Dipika, Adenomyosis if diagnosed when the patient is younger seems to be more destructive. When it has a good supply of hormones it spreads quickly. Yes, pregnancy is possible with adenomyosis but you need to be aware of how far the condition has spread in your case as you may become pregnant however if your condiion is very advanced you may well have a miscarriage. Book an appointment with your specialist to discuss the matter further x


Courtney on 19 November 2012 23:50
Hello Danielle, I'm really happy and relieved that you have put this support page up. I'm also rather concerned seeing as i'm 17 and have been diagnosed with Adenomyosis. It all started back in April this year and I was bleeding a lot during sexual intercourse and at first I ignored this, it wasn't until after a few months it was happening all the time and I was having painful and very long period (35 days of bleeding). I went to the doctors and for several times they refused a smear test, on the fourth time of going you could say I lost my rag and demanded one. In September I had a smear test and they took something out ( not sure yet as i'm waiting for my appointment with my gynaecologist ) and sent me to have a scan. Two weeks later I had a scan and the radiographer said I had uterine fibroids and I'd have a letter in the next 10 days. Two weeks ago a month after my scan I decided to ring my GP as I still haven't had a letter, and today is when I was told I had Adenomyosis and i'm a little concerned as I would like to have children one day but id rather have a choice and not have one at all. Thanks xxx
Reply to comment
 
Courtney on 27 November 2012 18:28
can someone please reply to this? I am in so much panic over this i need some reassurance to be honest.


Melanie on 27 November 2012 23:39
Have you tried Birth Control Pills to control your symptoms until you decide to conceive? That helped me for many years to control the pain and other symptoms.


Courtney on 28 November 2012 13:18
I have the implant and i have got rivigon contraception pill but the pain is still there.


Melanie on 02 December 2012 02:24
The coil implant to prevent pregnancy? Like Mirena? Sorry, I am in the US so things are a bit different here. If so, that can be causing your pain from my experience. Continuous birth control pills without getting a period has helped me. Just a suggestion since u are very young. :)


Courtney on 02 December 2012 23:24
I tried the contraceptive pill but not the coil yet x


PleaseH3lp! on 08 March 2013 02:22
I've also recently been diagnosed w Adeno and I am looking for treatment options! But the key factor for me is conceiving/ having kids. I am in my early 40 yrs old, and have never had children. I want to know if the Osada Procedure is really effective, and I would be able to conceive 7 months after the procedure. The reason I am asking about this procedure is that there is really limited literature about it, other than what is published by Dr Silber's website. And after reading the numerous NEGATIVE reviews about his questionable ethic and the effectiveness of the procedure, I am even more crushed & scared about the credibility of this Dr Silber's (but he seems to be the only one who's had any experience doing this! Please she'd some light if u can. Otherwise, is there another source (website) or specialist in the country who can perform this procedure?


Anita on 20 November 2012 22:14
Hi, I have stumbled across this website whilst trying to find a cause of my crippling symptoms. I don't actually have any periods due to a successful TCRE about 8 years ago. I have the most crippling pain every 3 weeks and 2/3 days as well as many other symptoms (my cycle was only 24 days). My GP thought it was bowel related, but turned out I was correct and there was no blockage or anything there. Then I was referred to a gynae as I had started keeping a diary and a different GP thought it was endo. I had a laporoscopy 3 months ago after an ultra sound, and am waiting to go back for a follow up (which I have heard today is postponed from the end of this month to the beginning of March!!!). Initial results have come back OK although I do have a couple of fibroids measuring about 3cm each, along with a tilted and "firm" womb. I am at my wits end with the pain that I have to endure and the disruption of my life. My husband is worried as he see's me doubled up in pain and even our children are starting to show concern. I feel like I can take something with me on my next appointment and hopefully this can be ruled out or diagnosed and ultimately dealt with. I would like to thank you for putting this information out there for all of us that are suffering, but apparently not many people have heard of it. Anita
Reply to comment
 
Danielle Wright on 28 November 2012 22:05
Hi Anita, I know I have answered you directly already, but for the benefit of others who may have the same question as you, a firm uterus is a symptom of adenomyosis in that as the uterus wall cavity expands and becomes 'boggy'it also tilts somewhat which is very painful. At its worse it can swell to the size of a 9 month pregnancy. Please feel free to refer your clinician to this website should you need to reiterate your concerns and thoughts in regards to adenomyosis. Kind regards x Danielle x


elah on 21 November 2012 10:47
Hi Danelle, im was so happy to find your page and it was very helpful. I want to seek some advice. Im 30 yrs old now. About 1yr & 9months ago i undergo right ovarian cystectomy-Endometriotic cyst & Excision of adenomyoma-Adenomyoma here in hongkong. My oby-gene advice me to get married and have baby soon as possible. after 1yr and 9months its re occuring again.i do ultrasound and my ultrasound report was my uterus: 7.36x 8.25 x 7.86cm avteverted abonodmalities noted: Both the anterior and posterior myometrial walls demonstrate course echopattern suggestive of adenomyosis MYOMA 1- posterior intramural measuring 5.18 x 5.92 x 4.04 cm and MYOMA2- anterior lower segment intramural measuring 1.89 x 1.82 x 1.27cm. And my ovaries are both normal.. i was plannning to get married and plan to get pregnant.Im just worried about the "uterine rapture" are there less chance for me to have a baby? Do you think im more prone to miscarriage and uterine rapture coz i undergo myomectomy already? Thanks for the advice in advance
Reply to comment
 
elah on 21 November 2012 11:39
i have a follow question danelle..are there ways to that can do to avoid miscarriage or uterine rapture during pregnancy after having myomectomy and the adenomyosis is presence again during pregnancy.thanks


Danielle Wright on 28 November 2012 22:13
Dear Elah, with adenomyosis uterine rupture is possible and you must think through the complications that this will bring you - should the unfortunate event occur. As far as pregnancy goes, the best thing you can do is to use your knowledge and be proactive. If you prepare well for pregnancy and tell your general practitioner and ensure the clinicians/midwife at the clinic you attend prior to the birth are all well aware of your set of circumstances you will be well on the way to ensuring that no eventuality will be overlooked x That being said, many women do have relatively normal births with adenomyosis x


Lucy B on 04 December 2012 13:43
Hi - after lots and lots of scans, a laperoscopy MRI etc I was diagnosed with adenomyosis. The symptoms are very severe and the last 2 months have been agony (as well as a v v heavy blood flow/anemia etc. I have been taking 3 x 5mg of Utovlan (norethisterone) a day for days 1-21. It works wonderfully but as soon as I have the 5 day break it is a complete nightmare! Last month I delayed the break and it was as bad as I'd expected. 7 days of v heavy beading and 14 days of agony - even after I had started taking Utovlan again. Do you know why you have to take a 5 day break and what the risks are if you don't?
Reply to comment
 
Danielle Wright on 10 December 2012 20:14
Dear Lucy, although I have responded personally to you, for the benefit of others that may read this message - it is important to point out that any kind of hormonal treatment that requires a 'break' in the dosage is a requirement to allow the uterus to shed it's lining once a month. Complications do occur when this process is not able to occur and the lining of the uterus when it becomes thicker can induce other conditions which can lead to very serious complications and even cancer of the uterus. Considering that adenomyosis also creates this unhealthy uterus build up, it is very important to allow your body to try and clear away the debris it needs to have removed as naturally as possible. Please remember the pill is only masking the symptoms of adeno, the condition is STILL there. There are many websites that can inform you about this particular subject. For further details click on the link: http://www.bbc.co.uk/health/physical_health/conditions/pilllongterm.shtml This is quite an interesting read to: http://www.dailymail.co.uk/health/article-55603/The-Pill-All-need-know.html I hope that helps a little x Danielle x


Jeannie L on 06 December 2012 20:11
Hi Danielle, I just came from the gastrenterologist telling him my symptom of mucous from rectum plus all the gyn sxs I'm having. Was diagnosed with possible adenmyosis after an ultrasound but no one has put all this together. I also have vaginal pressure and rectal pressure. After standing for a couple hours I am so uncomfortable now even sitting for long periods is very uncomfortable. I have had urinary frequency for a while and recently had a uti. I am going to have a hysterectomy due to heavy prolonged bleeding in January. I am so afraid that my sxs won't go away afterwards. I have gone from being active to having to be sedentary due to pain. My gyn didn't feel my sxs were related to what she saw on my ultrasound. I also have a retroverted uterus, is this caused be adenomyosis? My uterus is 10.3 cm in length. They checked me for prolapse but they check me while I'm laying down,my sxs are went I stand or sit. I would love your feedback. Thanks for the webiste it is so informative and supportive!
Reply to comment
 
Jeannie L. on 06 December 2012 20:16
I forgot to mention I also have an ovarian cyst that measures 3X2.4x2.5 and my right ovary is enlarged at 4.3cm length my left is normal size at 1.5 in length.


Danielle Wright on 10 December 2012 20:18
Dear Jeannie, as the uterus becomes heavier and the walls are more filled with blood, it will move and this will cause pressure a great deal of discomfort and will cause problems when it is pressing on particular areas of the bowel and bladder. It is good that you have supportive clinicians, and feel free to ask them to take a look at this website, since it may help explain to them why you are feeling what you are experiencing, and in turn they may be able to help other women more quickly too. Thank you for your support x Danielle x


Tricia on 17 December 2012 19:19
Hi, I'm just wondering if anyone else diagnosed with severe adenomyosis suffers from chronic extremely bad headaches. It seems like I have one or there's one just on the edge every day. And I'm exhausted, utterly and completely exausted. Anyone else? Suggestions? Thank you!
Reply to comment
 
Danielle Wright on 17 December 2012 20:43
Hi Tricia,headaches are very common with adenomyosis. The excess of hormomes is the main culprit particularly estrogen. The LIVESTRONG.com website has some very useful tips on how to eliminate estrogen through diet that you may like to take a look at x http://www.livestrong.com/article/16099-foods-reduce-estrogen-dominance/


Tricia on 18 December 2012 15:02
Thanks so much Danielle, I appreciate the advice. I've read the article and made a list and plan to change my diet to help decrease the estrogen. My doctor thought it may be due to low iron or what she calls a 'narcotic' headache due to the percocet I currently take when the cramps and pain can't be helped by OTC medications. So I'll give this a whirl and hope for the best! Thanks again! Tricia


Deb on 18 December 2012 05:37
Thanks so much for this website, it's great to find such a resource about our condition. I was diagnosed with endo & then adenomyosis after doing IVF years ago. The IVF didn't work back then, I did it because my ex-husband had fertility problems, but now because of the endo & adeno, I have 2 blocked fallopian tubes. I'd really like to know if anyone else has had the same problem & still achieved pregnancy? My partner & I would love to have a child & now IVF is our only option, but there is little information about getting pregnant if you have adeno. Thanks.
Reply to comment
 
Danielle Wright on 25 December 2012 17:10
Hi Deb x If you visit the Facebook page and scroll down, you will see lots of questions that have been answered by association members in relation to achieving pregnancy with adenomyosis. Please feel free to to join the Facebook page as a member of the AAA simply by 'Like'-ing the page. For any other information, again please email via FB and I can post any direct question on the site on your behalf as this way it is more confidential and you will see lots of feedback x Take care x Danielle


Sharon on 20 December 2012 02:56
I came accross you website while doing some research. I am 42 and had a hysterectomy for Adeno about a year and half ago. I kept my ovaries as I did not want to do HRT. About five months after the hyterectomy I begin having issues with ovarian cysts. As time passes usally about every two to three months I have cysts that burst, very painful. I have been to the GYN several times and had many ultrasounds. On the occasion that a cyst cannot been seem the gyo suggested it might be GI releated. So I went had a colonoscopy done, normal results. And I have been recently dealing with what feels like the same pain as if I was having a period. With all the same symptons as before my hysterectomy. Could Adeno still be playing a part in this? I know my symptoms are real but can't seem to find a concrete answer. I do not regret having surgery as it has improved my daily life just very frusterating that surgury was not a cure all. Is this a liftime sentence?
Reply to comment
 
Danielle Wright on 25 December 2012 17:17
Dear Sharon, just a thought, but have you been screened for endometriosis within the bowel wall or externally to the bowel on say, scar tissue where the remaining tissues may have adhered to the back of the pelvic wall or surrounding tissue. An MRI with a colour doppler tool should highlight any adeno/endo type cells if they are located in and around the easy to reach areas (diagnostically speaking). It would definitely be worth visitng your GP getting tested for iron stores to see whether you are losing blood during your cycle and then getting referred back to your gynaecologist to see whether you have endo or even some adeno cells located elsewhere. In the meantime, it would be worth thinking about other aspects of your health, whether there is anything internally pressing down- any prolapsed bowel or bladder and discussing this too with your GP x Keep in touch x Danielle x


Jo on 29 December 2012 19:00
Hi, I've been experiencing terrible pelvic pain for 2 years and they found I had Endometriosis on a MRI last year with a couple of cysts present also. My Gynaecoloogist didn't want to operate as I've had major abdominal surgery in the past and he's fearful he could make matters worse, so he's fitted a coil. In the meantime I've also had steroid injections to try and ease my pain, but they've not helped. I've also got Secondary Progressive MS and Drs are very quick to put things down to this, but I know my body (A bit!!) and the pain isn't the same. They've redone the MRI recently and it nows shows evidence of Adenomyosis as well as the Endo, with the cysts remaining the same size. I'm due to see my Gynaecologist on the 7th Jan 2013 and feel I should push for a hysterectomy because the pain is agony, but do you have any advice for me, please?
Reply to comment
 
Danielle Wright on 30 December 2012 23:43
Hi Jo x Thank you for your question. This is something many women will probably wonder about. My advice to you would be to think about what you are still able to do in terms of general health. Are you still able to walk a fair distance? (say half an hour without getting pain down your legs or out of breath) can you get in and out of a car easily? are you able to work for 4 hours and not take a break because the pain is too severe? Are you able to function on a daily basis as normal, or do you have to break half way through the day from exhaustion and then sleep for three hours or more and still feel very tired? Do you have to wear maternity clothes to accommodate your tummy? Do you need to use the toilet frequently so much so that it is impossible to plan to do anything? I could go on, but what I am trying to establish is other than pain, what are the extent of your symptoms right now. If they are not as I have indicated they could be, it is probably wise to hold off from surgery and wait to see how the coil improves things. That being said, the type of pain relief that you currently take will also indicate at what stage your adeno is at. What I mean to say is that if you have been given very strong pain relief like morphine or another drug which is harmful to take for long periods of time, the surgeon will make the decision for you - to go ahead and have the surgery, as you cannot take very strong painkillers indefinitely. Ask to see any images of the MRI that you had last year and perhaps ask if they could do another so that you can see how far your condition has progressed -it will make it easier for you to decide. Keep in touch and all the best for the 7th x Danielle x


Jo on 01 January 2013 18:53
Hi Danielle, thanks for your prompt reply. I do have a lot more than just pain and it's affecting my whole life, home, work, social and my relationship too. I've been like this for 2 years, having tried pain-killers, D-Trans patches, steroid injections, Chiropractic care, accupuncture, physio, osteopathy, homeopathy, so I think it's time to have a frank heart to heart with my Consultant, as it's even changing my personality now, I'm getting so grumpy and that's not like me. I'll let you know how it goes on the 7th and thanks again for caring x


Jes on 04 January 2013 05:47
After about 6 months of having a menstrual period so heavy I couldn't even leave the house, I finally got diagnosed with Adenomyosis. All of my problems began of May 2012 also in May I started putting on rapid weight did anybody else have this happen? I put on almost 30 pounds in two months. My doctor has given me birth-control to try to regulate my. Adenomyosis I am afraid to take it because I do not want to gain anymore weight. I have tried everything in the losing the weight I've gained. I've never been a very big woman 5 foot 320 pounds now I am hundred and 50 pounds and no matter what I do exercising regimen or diet nothing nothing changes. Did this happen to anyone else and anyone find a solution for it? My tiredness has just been uncontrollable no matter what I do. I'm so frustrated and speaking to my gynecologist all I get is let's get your period under control first and get everything situated and then worry about the weight however I do not want to have to gain another 10 or 15 pounds and I have 45 pounds and I need to try to get off that doesn't come off in your early 30s like it used to. Please please please if anybody has found a way to help reduce the swelling if that's what it is for help assisted with weight loss with the waking of this please guide me in that direction thanks
Reply to comment
 
Danielle Wright on 04 January 2013 09:00
Hi Jes, yes the weight gain is part of adenomyosis. Rapid weight gain is actually high levels of estrogen interacting with the way your body is working, and you are retaining nutrients and water incorrectly. When the uterus is removed your body will gradually get wrid of this toxic pollutant, you will notice an immediate change in your face, hands, ankles and the rest will come off gradually with gentle exercise. It is distressing, but try and concentrate on eating estrogen eliminating foods. The LIVESTRONG website is excellent on advice and I have included a page link to start you on your quest to improve your quality of life xx http://www.livestrong.com/article/393340-how-to-reduce-estrogen-in-your-body/ In the mean time, do not beat yourself up about this, you cannot control this right now until the adenomyosis has been removed once and for all x Keep in touch x Danielle x


Claire Cooper on 05 January 2013 12:06
Hello there I am sorry to jump in on another comment/thread but I am going in for a total abdo hysterectomy on the 24th Jan and I have one more week to decide to keep my ovaries intact or not. Mine is a 20 year history of gynae issues, resulting in 8 seperate procedures including ablation and cystectomies etc. Anaemia all along the way with Hb down to 7 at times and Serum Ferritin at 2.5! Anyway....I was lucky enough to be seen by a locum (now regular and amazing consultant) for my last procedure who instantly diagnosed Adenomyosis after scans and a further lap. My womb is at the 6 month gestation size currently and the associated headaches are blinding. Today is a very bad day, and the thought of work tomorrow ( I am a nurse) makes me want to cry. However, the end is in sight and I feel so releived. I just have to make THE decision. I am 38, have two grown up sons and have been married 20 years. I really cant face a full on menopause after the many Zolidex induced mini ones I have had...but am I being short sighted? What if I just kept one Ovary? Would I soon see some sort of normalisation in head/breast pain and moods? I really want to get off of this Estrogen rollercoaster, but am not sure that I want to go to the other extreme either? If anyone could share their experiences of this I would be so appreciative. And to you Danielle...thank you so much for your hard work and sharing. It feels great to not be alone at last. Best wishes to all, Claire x
Reply to comment
 
Danielle Wright on 06 January 2013 21:03
Dear Claire, yes keep one ovary, in fact I would always advise keeping either one or both. Removal of the uterus will cause a likely mini shock to the system in terms of hormones, but the ovary/ies will help balance out the rest of the endocrine system NATURALLY :O) This is the real deal. Artificial hormones modelled on cattle/bovine chemistry are not natural and absorbable/dealt with in the same way by the human body. The moment the uterus is removed you will feel completely different. The headaches will cease and may only come back once or twice in the year rather than every day. Your swollen tummy will gradually reduce in size and you will feel like a teenager again xx I can promise you will feel completely different for all the right reasons xx Keep in touch x Danielle x


Samantha on 06 January 2013 17:09
Hi Danielle,I am 39 and have had one child who is now 13. I have been diagnosed with adenomyosis and have also had my left tube removed. I have undergone 2 ivf attempts which have both failed ;-( Before each ivf attempt i have been prescribed Prostap for 3 months. I was wondering if you have any connections with any medical staff who could give a second opinion as to wether they think this drug is appropriate or if you know if i can have some of the adne removed? As we fail at the implantation stage each time. I would like to also say that its a relief to know i am not alone with this condition! Thank you x
Reply to comment
 
Danielle Wright on 06 January 2013 21:12
Hi Samantha x My best advice would be for you to contact your general practitioner and ask them to refer you to see another gynaecologist for a second opinion either at the same hospital or clinic. If you are located in the UK and can afford to/or have insurance,you could even see a private gynae surgeon for their opinion. In the UK you do often find that if you see someone privately, and they also work for the NHS they can go on to see you at their NHS clinic, depending upon the circumstances. Speak to your GP about a referral for your second opinion stating that you would be happy to accept a cancellation appointment x Keep in touch x Danielle x


Jessica on 08 January 2013 20:02
Yesterday I was diagnosed with adenomyosis, I am currently 21 years old and in may 2011 I had a miscarrage that ended in a dnc. Ever since my surgery my periods have not been the same, I begun to bleed in between periods or go a month or 2 with out a period also have had sharp pains but not during my cycle,my periods are not painful the first day or to I have cramps that would be 3-5 out of 10 for pain, also my periods are not really heavy and last about 4-7 days, I have been experiencing blood clots in my cycle but not large ones. I had an inner ultra sound on dec.17 2012 and was told that i had adenomyosis based on my ultra sound results, I had blood work done also my iron, hormones and thyriod are perfect but that is all the tests i was given. My doctor was not helpful what so ever, he told me i had adenomyosis and that it would not affect my chances of getting pregnant again, but it will never go away and that i need to go on birth control pills, and to go home and research adenomyosis. my first question is could it be a possibility that i had been misdiagnose? Should I get more tests done? If so what kind of tests? I read about uterine fibriods and I must admit I have more of those syptoms then adenomyosis, is there a possibility that I have that rather then adenomyosis? I am seeing a specialist in a couple weeks, I think thats for the best, but right now my mind is going a little crazy so if anyone has imformation that could be helpful for me it would be very much appreciated.
Reply to comment
 
Danielle Wright on 12 January 2013 11:20
Dear Jessica, thank you for your message. Diagnosis for adenomyosis used to be after hysterectomy with the pathology clinicians identifying adenomyosis after analysing the tissue from the uterus with the help of imaging through a microscope etc. These pathology tests are still done, but also clinicians look for other signs and symptoms of uterine cancer etc. With excellent technology and the skill of the clinicians improving - using MRI scans with even better and constantly evolving diagnositic tools, adenomyosis is becoming far easier to identify. You are very lucky to have been diagnosed so early for one thing. The symptoms you describe are all those of adenomyosis. In any case, there is of course no harm in asking for another opinion from another gynaecologist if you so wish. I have included a really useful link about fibroids: http://www.youtube.com/watch?v=jywnd_Te6kg You will need to be referred to another by your doctor. If you live in the UK, you are entitled to a second opionion on the NHS. Sadly your experience with your doctor is rather common, although try not to let their incompetence in dealing with you and your condition upset you too much. The NHS still insist that GP's are aware of adenomyosis here in the UK, although most association members have experienced quite the opposite. I think you are doing the right thing focusing in on getting the information and support you need. As with any service you receive anywhere, if you are unhappy with advice or treatment vote with your feet and find someone who has the skills to deal with your questions. I feel the best way forward for you now is to at least accept that you are very likely to have adenomyosis and treat your symptoms in that way, until you have that second opinion - if that is going to be your next move. In the meantime, read through the FB Adenomyosis Advice Association page. You will read about women who have gone on to have pregnancies with adenomyosis, it is not always an easy process and can be a very emotional journey. There is one very important proviso here, you must make sure that your iron levels are checked regularly. You must keep an eye on your symptoms, if necessary keep a diary to help you keep track of things. With adenomyosis it is very common to feel quite muddled at times, which is the direct impact of an estrogen overload. The levels of estrogen that adenomyosis subjects you to is way off the scale of anything that ANY clinician would EVER be able to prescribe! Many women report feeling so much better when they are pregnant, and clinicians explain that the extra boost of other hormones help cancel out the estrogen and this temporarily halts the condition. I hope that this helps a little x Keep in touch x Danielle x


jo on 13 January 2013 23:51
Hi, I have Adenmyosis and I was wondering why the pain is the worst after I get up in the mornings. If I'm lying in bed its fine but as soon ad I get up and start doing stuff I get excuciating pain. Even if I wake up with pain and take panadeine, I nap for another hour, get up and the pain starts all over again , why dosent the pain relief last?
Reply to comment
 
Danielle Wright on 20 January 2013 16:00
Hi Jo, you will find that when resting your body will relax. Your blood pressure changes as you stand, and if you consider the pressure that is currently on your heart with the excess estrogen and water retention, your insides are taking the brunt of the extra swelling, any food you eat will also make things uncomfortable and the pressure on your diaphram from the swelling inside also adds to the pain. Of course then you have a compacted bladder and bowel inside the pelvic cavity, so with all that going on, it is no wonder that you feel better when you are lying down. The important thing to remember with adenomyosis is to try and do regular gently but cardiovascular exercise. Walking is ideal and swimming if you can is great too as there will be less weight on your joints. Both these forms of exercise will help keep your heart healthy, and that is REALLY important, particularly when you maybe facing surgery. The better condition you are in before any treatment, the quicker that you will be able to get back to your old self and exercise routine afterwards x Danielle x


Courtney on 15 January 2013 15:04
I've been told i'm having an hysteroscopy but I am now on 6 pills a day and I am in a lot of pain. This is getting beyond ridiculous, I'm 17 and I would like to get on with my life is there anyway I can chase up I havn't even got an appointment for this yet?
Reply to comment
 
Danielle Wright on 20 January 2013 16:08
Hi Courtney. This is the most difficult part and you will find the most testing because you are feeling low and in pain. My advice to you would be to make a list of your current symptoms and have them handy when you contact the secretary or appointments clerk for your surgeon. Explain that you need their advice and ask how far down on the list you currently are. At this point explain that you are happy to accept a cancellation appointment and leave your contact number. There is no harm in doing this, as sometimes appointments come up where someone does not attend or has to cancel at the last minute. You have not indicated your location, but here in the UK the National Health Service has a set of guidelines for treatment times etc, which may be of some use to you http://www.nhs.uk/choiceintheNHS/Rightsandpledges/Waitingtimes/Pages/Guide%20to%20waiting%20times.aspx I hope this information helps a little. Take care x Danielle x


Courtney on 23 January 2013 12:48
I finally got a hysteroscopy on the 15th February so hopefully they can get rid of this now.


Ashley on 17 January 2013 17:01
I have recently been diagnosed with adenmyosis which is having a severe effect on my work; life and relationship. I am trying to conceive just now and have been for over a year but the pain and emotion each month is getting harder to bair. Is there anything at all I can take that could help ease the pain or increase my chance of conception. I have looked at Chinese herbs DIM and Myomin which are ment to control excess Eastrogen - however on the purchasing website they say that not to take if you are planning to become pregnant. Also is natural progesteron cream worth considering or can I use some sort of IEU and still get pregnant?
Reply to comment
 
Danielle Wright on 20 January 2013 16:33
Dear Ashley, thank you for your email. A good diet full of foods that eliminate estrogen will help, and progesterone cream as with other topical medication is a very hit and miss method of treatment. Different body mass and body fat ratios, skin/absorbtion/application issues will deliver one level of medication to one and another level to another x Whilst some women do fall pregnant and have cut out coffee, alcohol and tried to eliminate estrogen, still these measures do not work. There are some really excellent websites around that help women with endometriosis, since both conditions are closely linked - you may find their advice helpful. I have enclosed this website link as a starting point: http://www.babyhopes.com/articles/endottc.html Of course there are other fertility websites that do cover the subject also and I have enclosed a number of these for your information: http://attainfertility.com/article/adenomyosis http://www.patient.co.uk/health/Infertility-a-Summary-of-Treatments.htm It is reassuring to know that when pregnancy is achieved the rush of hormones that takes place makes the symptoms of adenomyosis cease, although these do return following the birth. As with all things medical, do seek advice from a qualified fertility specialist for further information x Keep in touch x Danielle x


rabia on 20 January 2013 20:47
im diagnosed with Adenmyosis recently. previously i have had sergry for fiborides.since then my pain is unbearable .pain starts before a week and lasts after two three days in periods.i have sever pelvic pain acompined sever right leg and breast pain.my periods starts after every 20 days including the 7 day of bleeding. bleeding is so heavy i have to stay home for three days.its like that you open a tap.my hb is 8 and i hav migrine too. i m loosing my memory.im gaining weight.my eyesight is geeting weaker.i find only a week during the whole month without pain. please suggest me what should i do im unmarried.
Reply to comment
 
Danielle Wright on 21 January 2013 13:44
Dear Rabia, okay, you are at the stage I was at when I had my hysterectomy. Your body is under immense pressure and is not coping with everything that this condition is putting you through. You need to urgently see your doctor and tell them about what you are experiencing and how your quality of life is deteriorating. You need to have constant checks on your blood now, as I think you maybe - to ensure that you are having some level of iron replacement to boost your iron store levels, and you urgently need referring back to your gynaecologist to see them as an urgent case. These symptoms cannot be left to carry on indefinitely, and you really need to speak up to get the help you need. If your doctor is unsure how severe this condition gets, please show them this website and explain that you need some level of treatment to help you regain some control of your cycle and life. Keep in touch and let me know how you get on x Danielle x


Debby on 22 January 2013 12:21
Hi, a week ago my doctor and I thought I was beginning menopause after having a bleed a week after my period. at only 48 I was hoping she was wrong. Now here I am today reading all of your posts wishing she was right!! Today i was diagnosed with Adenomyosis after a pelvic ultrasound and have to be honest after eveything I have read tonight am pretty damn scared!For years I have, (while regular), had very heavy periods and lower back pain that I have alwys been able to deal with relatively well my symptoms seem to have escalated at a very fast rate now with back pain so severe I cannot bear anything touching me in the lower back, it all seems to have happened over the last 5 weeks!!. My gyno appointment is not until March with my GP recommending the IUD. I am not sure how I feel about that yet. I have a high management position in a predominantly male environment and am unsure how much or even what I should tell my boss. Your pinion would be a great help.
Reply to comment
 
Danielle Wright on 23 January 2013 18:59
Dear Debbie, I am sorry to hear that you have had a positive diagnosis. As far as speaking to your employer about it, please do not stay silent about the condition. It is your duty as an employee to ensure your employer is aware of your welfare and your needs. You have the right to fair treatment - employee/employer relationship is fundamentally about give and take and it should be fair. You may need time off for appointments, and you can always make up time and be flexible. You may find this link helpful http://www.inbrief.co.uk/employees/long-term-illness-work.htm On the back of this, please mention this website to ensure that any occupational health worker or team understand what you are up against and your likely prognosis. I hope that helps a little. In the meantime, ensure that you visit your GP regularly and keep copies of any return to work forms etc for your records as these will support the fact that you are proactively managing your symptoms and doing EVERYTHING to safeguard your job. If you need legal advice further on, please let me know and I will put you in touch with the relevant expert according to your geographical location x Take care x Danielle x


Margie on 23 January 2013 00:52
Hi Danielle, I was doing my regular 'googling' trying to figure out what is going on with me when I came across this website. It was like OH MY GOSH that is exactly what i have been dealing with. Starting about 5 years ago I discovered extreme sensitivity to touch in my pelvis and lower right side abdomen. Plus right side pain. At the same time my periods were getting very heavy. I have had numerous tests...colonoscopy, ultrasounds, trips to different doctors and on and on. Recently my periods have been so very heavy that my Dr is concerned about me hemorrhaging. I also cant fit into any of my pants it is so uncomfortable. My abdomen is so extended it is uncomfortable, my last period felt like I was having contractions. My recent ultrasound came back and the Dr office said I have a bulky uterus and now have appt with Gyne this friday. My doctor has mentioned hysterectomy but never has the word 'adenomyosis' been mentioned. I discovered it when I was googling 'bulky uterus' as I had never heard of it. Then I came across your website and it all started making sense. All of the tests, all of the symptoms that I have been having the past five years!! I'm sure this is what I have but I will let you know after my appt on friday. Thank you so much for website and all of your dedication to this.
Reply to comment
 
Danielle Wright on 23 January 2013 19:01
Hi Margie, I am very glad that the search engine optimisation tools are working and that they have directed you to the Adenomyosis Advice Association x Keep in touch and let me know how you get on x Danielle x


Ranita on 30 January 2013 22:41
Hi Danielle, I just have been diagnosed with Adenomyosis because I have heavy clotting, a large uterus, and I am anemic. I just scheduled a robotic hysterectomy today and this sight is helping me to feel like I've made the right decision. I am 46 and I would say I have felt like my stomach/gut was growing in size and my periods have gotten heavier in the last 5 years. I've had a tubal and 2 c-sections and reading your website has made me say wow! I don't experience as much cramp pain as I did as a teenager when I would throw up for 4 hours during my period every month from the pain. Could I have had this way back then? is that a symptom? I also have experienced pain with intercourse and had a few early miscarriages along the way. I was just wondering if this sounds like something I would have had since a teenager or something that only developed since having kids and the tubal. Just curious if you have thoughts on that. This is a great website! thank you.
Reply to comment
 
Danielle Wright on 31 January 2013 15:23
Dear Ranita, it is possible that you have had this condition for many years. Until we all really understand how and when this condition starts - we cannot say more than that other than many women with adenomyosis that has been finally diagnosed report of very troublesome periods from teenage years x I am glad that you have found the website helpful x Danielle x


Katie on 01 February 2013 18:04
Hi Danielle, It's a great website, I'm appalled at the lack of awareness of this condition. Despite being diagnosed with suspected adenomyosis after my first laparoscopy noone tried to help me until now other than fobbing me off, saying that I was a difficult case of endometriosis and sent me to the pain clinic who put me on pregabalin. That's a whole other disaster story. Anyway, for now, I have a question. Sorry, I realised I had posted this in the wrong area: Hi, I have been diagnosed with adenomyosis after my 3rd laparoscopy in December. My gynae is recommending a subtotal laparoscopic hysterectomy. I trust him and think it is probably the way to go, I just wondered if anyone has had uterine artery embolization successfully for adenomyosis? There doesn't seem to be much research out there for adenomyosis but it is used more often for fibroids. I'm seeing my gynae on Monday to give him my decision so any suggestions would be very welcome. Thanks.
Reply to comment
 
Danielle Wright on 01 February 2013 18:15
Hi Katie, doesn't matter where you post a question, I will find it ;o) Thanks for your feedback firstly - I agree it's like the dark ages still with research and development into this condition but being positive you and I and a whole host of other women are drawing attention to this just by talking xx The process you describe has helped some women that have adenomyoma growing near an artery. I am not a clinician, and would strongly recommend you speaking to another gynaecologist if you can specifically about your condition and the extent of its progression across your uterus xx Keep in touch xx Danielle xx


Joann on 04 February 2013 22:24
Hi, I am 46 years old and I have recently been diagnosed with adenomyosis through a MRI for what they thought were fibroids. I was going to have an Uterine Fibroid Embolization done until I found out it isn't fibroids, now I am not sure what to do. I am very confused, scared, and unsure on what the next step should be. My doctor says it is ultimately up to me if I have the UFE or a hysterectomy. I am just not sure what I should do next. Just need some advice from someone who knows what I am going though. Thanks for you site, it was very informative.
Reply to comment
 
Danielle Wright on 10 February 2013 23:02
Dear Joann, Thank you for your email. You are not alone - and I know exactly how you are feeling right now.To be honest, you need to think about how the adeno is affecting your life. Can you cope with the pain you are in right now? Is your adeno severe enough that it is interferring with everyday activities. Is it stopping you from walking down the road, are you asleep halfway through the day from exhaustion,do you have severe anemia? after a period - are you so 'empty' that you have a headache for days afterwardsbecause you have used up your iron stores? Have you had to go part-time at work? Can you wear your normal jeans/trousers/skirt or are you now 2-3 sizes larger around the middle? Are you now getting stress incontinencewhere the bladder is now under immense pressure? You will be the only one that can answer these questions honestly. If the answer is yes, it is time to consider the differences between the treatments and discuss with your clinician what is the most suitable treatment for you x Keep in touch x Danielle x


Heidi on 15 February 2013 23:37
Hi Danielle, and all who visit the site. This is fantastic, I have finally found people who understand what I am going through. Im a 28 year old woman, who has the horrid adenomoyosis. I have had it for about 8 years, diagnosed for approx 4 years. Its only feb and i have already been admitted into hospital 4 times this year, again with pelvic pain, given every test and tablet under the sun and sent home again! The last admission, via ambulance was different I met a pelvic pain specialist who recommended Zoladex treatment? I have had 2 monthly injections so far to "put my ovaries to sleep" and on 3rd injection i start HRT tablets. This sounds wonderful, doesnt it? but no, ive been ill yet again this week, on more tablets, im emotionally drained, constantly tired and basically a mess. Health visitor came to visit yesterday to tell me she is concerned about me, shes concerned? try being me for a moment! yes im lucky I have 2 children a boy of 8 and a girl of 6 months who they are calling the miracle baby as I was told I couldnt concieve. I am grateful but really need this horrible rollercoaster to end, all these tablets are not helping me the pains still occur and i dont know how much I can take physically, emotionally and mentally. Its taking its toll on work, with time off every other month or even every month, on my family because of all my hospital admissions and my relationships with husband and family, every pain frightens the life out of me. Im thinking of electing a hysterectomy? I was told im to young, well im sorry but I need to lead a normal life of a 28 year old wife other and young lady is this too much to ask? I feel im going on but you guys understand. Thanks... Heidi x
Reply to comment


heidi on 15 February 2013 23:41
That was meant to say mother at the end there, not other x
Reply to comment
 
Danielle Wright on 19 February 2013 19:51
Hi Heidi x Thank you for your email. Hysterectomy is very final and is something that takes a great deal of courage to decide upon opting for. Every week I hear from young women who are constantly sent away because they are seemingly too young for surgery. It is barbaric. Just because the medical profession are scared of being sued if someone changes their mind and want to have children. Doctors really need to think about the patient. There is only so much pain and life disruption a person can take. If you live in the UK you need to write your request down and send it to your GP, you then need to do the same and send it to your surgeon and then you need to get both to agree to allow you to have the surgery. Should you need any further support, please come back to me again x Take care, and best of luck x Danielle x


Kelly on 17 February 2013 20:37
I'm new to this website as well - in reading all of the posts here there seems to be one common factor - so many of us have been misdiagnosed, or poo-pood off by doctors. I have not been diagnosed with adeno - but seeing this site has certainly given me new hope for SOME kind of diagnosis. Every single symptom listed fits with me..and I've been told I have polyps, I have fibroids I have this, I have that, and then the ever popular - do you have depression? Are you sure? Those being from doctors who want to blame this condition, or any condition for that matter, on DEPRESSION - all because they A) can't come to a concrete diagnosis or B) it's simply because we're women. I am going to a new physician on March 1st, and you bet your sweet bippy I am going to bring am adeno. I had stated in a different are that even now as I type this (and we're all women here, *grin*) it feels as if my uterus is trying to bust its way out, I bleed constantly, my legs hurt, my pelvis and back hurt, the migraines... those are lovely. I have a job where I am on my feet the entire time; unfortunately, it's coming to a point where I can barely make it through an hour. Thank God I have such understanding bosses and co-workers. Danielle, this site has been a Godsend. I type this with tears in my eyes - because for the first time, I know I'm not alone. I have sisters in this. I'll update as my doctor appointment passes. Much love to all of you.
Reply to comment
 
Kelly on 17 February 2013 20:39
Made some mistakes in there - forgive me. "going to bring UP adeno," and "I had stated in a different area" I'm so excited to find this site I can barely type.


Danielle Wright on 19 February 2013 19:55
Hi Kelly x Thank you so much for your email, and I am completely with you in how you are feeling towards those around you who have been oblivious to your feelings and welfare for so long. You will always have support here as and when you need it x Take care, Danielle x


Lisa on 20 February 2013 02:22
I had a d&c in December 2012, first ovulation and period were painful (never had that before) but normal bleeding. Started on clomid days 3-7 and given estradiol days 11 and 12. Day 12-15 I had some uterine/pelvic pain. Day 15 ovidrel shot. Days 16-19 increasing pain with days 18 and 19 (today is day 19) so excrutiating that I was prescribed tyleonol with codeine. I have had labor like pains and contractions, dragging pain in my legs, frequent urination, diarrhea, nausea tender abdomen, legs shaking from the pain. An ultrasound shows a subendometrial cyst that has grown from 3mm in September to 5 mm on day 11 and 12 mm on day 19. The cyst has been diagnosed as adenomyosis. My doctor said the rest of the uterus does not show adenomyosis on transvaginal ultrasound. She said the uterus is normal size. It just doesn't seem to make sense though. The cystic area was there before my d&c in December; I never had these symptoms before, so why now? The symptoms are so severe, it just doesn't seem that this one area could be causing this much pain. I have to believe the adeno is diffuse in the uterine muscle. I asked my doctor for an MRI but she said it wasn't necessary, that she could see everything on ultrasound. She said that clinical findings and symptoms don't always correlate, but this just doesn't seem right. Any advice would be appreciated. I am still trying to have another child which is my reason for the fertility treatment. THANK YOU!!
Reply to comment
 
Danielle Wright on 20 February 2013 03:21
Hi Lisa - the fact that they have seen the adenomyosis is a good thing. There may well be more hidden across the uterus, however, your symptoms are classic of those of adenomyosis. You could of course seek a second opinion and ask to have another transvaginal scan (it does show the condition - that is how mine was spotted and how clinicians check for the condition). They will probably use a colour doppler filter (check down the Facebook page to see this in action on links posted and also click on the training video where a doctor in Sweden explains to clinicians what adenomyosis looks like during scans) to pinpoint exactly where the condition is and how advanced it has spread. The results of this test will help you determine the chances of a likely pregnancy moving forward xx Keep in touch and let me know how you get on xx Take care, Danielle xx


Lisa on 20 February 2013 13:06
Thanks Danielle- I am seeking a second opinion because it just doesn't make sense that I could have such pain from one spot. It seems like there has to be more if the symptom started after the d&c. Does it seem strange that it is progressing this fast? Two months and the pain is this excoriating? I hear people suffer for years with this condition before diagnosis? Another reason I think my condition is more severe than what they are seeing. Do you think an MRI is better for diagnosis than Doppler? My doctor wants to so a hysteroscopy. Will that help with diagnosis? Have you heard any positive results about the osada surgery in St. Louis?
Reply to comment
 
Danielle Wright on 20 February 2013 13:27
Hi Lisa, sorry I should have been clearer in my description of the doppler tool. It is part of the MRI scan - it is just another method of seeing the images that are communicated to the machine via the scan https://www.youtube.com/watch?feature=player_embedded&v=Mgz4waDpC7A . Regarding further diagnosis, this can be quite hit and miss since many times adeno seemingly does not 'appear' in samples of tissue or for one reason or another seems to avoid detection. Go for as many tests as you can though to see the true picture of your health, it will save you worry and time in the future. - I can confirm that Dr Silber's office have long support the Adenomyosis Advice Association and have a well regarded and respected clinic performing the OSADA treatment to remove adenomyoma. Please feel free to contact them and tell them that you have been in contact with me. Let me know how things progress x Take care, Danielle xx


Lisa on 20 February 2013 14:01
Thank you Danielle! I will be contacting his office today.
Reply to comment


Lisa on 20 February 2013 14:56
Danielle- One more question: is it possible for the adeno to develop so quickly and become so severe (in terms of symptoms) after a d&c? Seems like two month is such a short time to develop this fast.
Reply to comment
 
Danielle on 20 February 2013 16:06
He Lisa, yes, depending on what is causing the estrogen production - this condition can spread very quickly -particularly around the peri-menopause time, but not exclusively just at this time x Since adenomyosis can develop after uterine trauma there could be a combination of factors going on in your case x Danielle x


Karin on 23 February 2013 20:19
I had a trans vaginal ultra sound scan on 7/2/13 after a few months of irregular periods and pain. I am 47 and thought it was perimenopause. My scan results read as follows: Anterverted uterus normal in size and outline.The myometrium is heterogenous in echo pattern and contains a small sub centimetre cystic area? Adenomyosis.Normal uniform endometrium. Both ovaries appear normal. No adnexal masses,free fluid or cysts seen.Conclusion Heteregenous myometrium and which contains a small cystic area? Adenomyosis. Recommendations A MRI scan would be of further use to determine the presence of adenomyosis. I felt quite reassured by this scan because the sonographer and my GP reassured me it wasn't cancer.Two days ago I went to a Gynae who didn't really reassure me. He said he wishes people who do scans wouldn't presume things and that he wanted to rule out more sinister things. He never mentioned adenomyosis and disregarded the scan. He has arranged for me to have a hysteroscopy in 3 weeks even though a MRI was recommended. From what I have researched the heterogenous myometrium and small cysts on a tvs are hallmarks of adenomyosis. Now I am left stressed and worried sick thinking it could be a leiomyosarcoma of which the prognosis is poor. Please can anyone advice me please reassure,have similar experiences. If anyone medical out there could offer advice would be grateful. I am supposed to be starting a new job soon. Many thanks xx
Reply to comment
 
Danielle on 24 February 2013 00:15
Dear Karin, thank you for your message. Your transvaginal scan is exactly the method that world leading surgeons train clinicians to see and diagnose adenomyosis. I have attached a link for you to watch the training session that I am distributing via the LinkedIn awareness group and have also enclosed the password for you to be able to view it Website: http://www.talkingslides.net/f-o-g Username: any e-mail address Password: fogpass It is completely up to you, but if it were me, I would seek treatment from another gynae clinician who understands the seriousness of disregarding a qualified sonographer's screening results and I would notify the head of the department of the fact that their bedside manner is making you so worried about what you might have instead, and what can really only be determined in pathology and blood tests in terms of cancers etc! This is your body and you have the right to have the treatment you need. For the record, I was sent for a number of tests where I had to go under a general anesthetic which were all non conclusive and left me not only even more in pain and upset, but I then had to contend with employers who were not all that supportive either when I came back with non-conclusive test results. You need all the information you can lay your hands on to ensure that your new job does not suffer and that you can manage your healthcare moving forward. Keep in touch and let me know how you get on x Danielle x


Karin on 24 February 2013 17:46
Thank you Danielle for your advice. I am so annoyed that the consultant totally disregarded the scan results. He said he couldn't understand why I was getting pain and he thought the irregular bleeding was two different things. I kept asking him to look at the scan but he didn't seem interested!!I have decided to call my GP on Monday and ask for a referral letter and I'm going to organise myself a private MRI scan in next couple days. Now the consultant has said that to me I'm worried sick and can't wait 3 weeks for his hysteroscopy. I am also going to ask for a different consultant. When my GP had first seen my scan results she said it was adenomyosis I didn't have cancer and now that consultant has mentioned he ruling it out I'm a wreck! Do you think my scan results sound characteristic of adenomyosis? Big hugs and thank you Karin xx ps thanks for the link x
Reply to comment
 
Danielle on 25 February 2013 19:14
Hi Karin, okay, obviously I am not a clinician nor am I medically qualified in this field, however I have had the symptoms you describe and pretty much the same scan results. Try not to get upset x Hard as it sounds, try and focus on getting an accurate picture of what is going on when you get to see the next clinician. This in itself will help you determine your next step in your journey no matter what the outcome x Take some time out for yourself. Listen to some soothing music and spend quality time relaxing, and in the meantime, keep in touch x Danielle x


Jenny on 25 February 2013 18:11
Hi, I'm 35 and have had very heavy painful periods for years, several times been in to A&E and finally 8 years ago they found an Endometrioma on my left ovary the size of a melon! It was removed and I went on to have 3 healthy boys, since then, my periods have remained heavy and painful, I've had different pills, injections and the mirena coil, 3 years ago a laparoscopy showed scarring, but no endometriosis. While this was a relief, it didn't explain my symptoms. Finally after 2 hospital admissions in the last 2 months for abdo pain, and my persistence I have had an MRI and been diagnosed with adenomyosis. Consultant said total hysterectomy would be best option for me, then HRT, but worried about side effects and the time it takes to tweak hormones. I have appointment tomorrow to discuss plan of attack, but concerned how to manage pain until the op, has anyone found the oral pill helpful for a short time? Thank you for this website, it has already been so helpful to explain a condition I had never heard of! Jenny x
Reply to comment
 
Danielle on 25 February 2013 19:09
Hi Jenny, thank you for your message and I am sorry to hear about your journey so far. I have asked your question relating to the pill on the Facebook page and would ask that you keep checking there for feedback from others who have tried this method of controlling their symptoms. Kind regards, Danielle x


Jenny on 27 February 2013 18:34
Hi again, update from seeing consultant last night; he is going to do hysterectomy (uterus and cervix) and remove left ovary and tube as it's a mess from previous surgery. He has said there seems to be a spot on right ovary ?endometriosis but won't know for sure until he gets in and has a look. I'm now unsure whether to just say whip the lot out and start HRT rather than have the uncertainty in the future. Has anyone else had this sort of dilemma? Also, anyone got any advice pre surgery to give me best chance of speedy recovery, vitamins, exercise etc? Many thanks again to all reading this! Jenny x


Anita on 27 February 2013 22:41
Hi Danielle, just a quick update. I have started my Zoladex implants and HRT and am well into my 3rd month of treatment. Apart from what I call "twinges" (I should point out that I have a very high pain threshold) I appear to be free of the crippling pain that I was reduced to every 3 weeks or so. OK, there are minor side effects, such as the occasional hot flush each day and a couple of days after the implant I become edgy and hide away lol, but these are more preferable to the excruciating pain I was in as well as the other symptoms that I had. I still have pain in my legs, however, I have a very very tender area on the rear of my hip which may or may not be related to the possible (looking more likely) adenomyosis!! It looks like I will have a decision to make come May when I see my consultant, but it is a no brainer as I do not want the pain to return with a vengeance when the implants stop, as stop they must. I hope this "experiment" helps others, however, what works for one may not work for another. Anita xx
Reply to comment
 
Danielle on 28 February 2013 09:19
Dear Anita, as you know I have responded to you privately by email, but on behalf of the other readers, thank you for your update, I am sure it will help many x Kind regards, Danielle x


Elizabeth on 01 March 2013 01:02
Hi Danielle, I was diagnosed @ a month ago. I had never heard of Adeno, your site has been a big help, thank-you. After reading some of the comments I wonder if I was misdiagnosed with diabetes several years ago now, I've always had a problem with low sugars not high, was underweight, etc, I didn't fit the usual criteria. It sounds like my problem might be estrogen dominance. Have you ever heard of something like this?
Reply to comment
 
Elizabeth on 04 March 2013 21:22
Dear Elizabeth, yes there is a correlation between the symptoms of both conditions. I believe this to be because the body is overloaded with estrogen, it is not able to process carbohydrate and other elements, hence the rapid weight change as the condition progresses. Until more research is done into this condition, feedback like yours is very useful x Thank you for your update and feel free to keep in touch and let me know how you are getting on x Take care, Danielle x


Hayley on 01 March 2013 10:20
Hi, I wonder if you can help? I was diagnosed with adenomyosis and endometriosis a while back, my symptoms have recently got a lot worse, and I have just found out that the clinic that I have been attending for the last 8 years have decided to discharge me. Although my Endo nurse doesn't understand why, I have decided that I no longer want to be treated anymore and was wondering if this decision could be dangerous in the future. I have made this decision as one particular Dr that I have seen is really horrible, he told me I was to fat (4 weeks after giving birth), has made me feel like i am lying about my symptoms and I just cannot takee this kind of treatment any more. I normally bleed for 4 weeks then break for 3 weeks and bleed again, but I have found that I would rather suffer with the pain (sometimes being so bad I can't move!) than go back. One scan (By another specialist) I was told my tubes had stuck to the wall of womb, He however said that, that Dr was wrong and I was fine, I just don't understand what's going on. My GP has stated that the hospital I visit have the best Endo team where I live so I just don't know what I should do? Being that I work for the NHS, I am appalled that people can treat others like this! Please help!
Reply to comment
 
Danielle on 04 March 2013 21:36
Dear Hayley, thank you for your message. Ok, first thing speak to PALS at the hospital and make a complaint and find out the name of another gynae to get referred to. AS you know, there are guidelines in terms of patient care and NICE have spent many years creating a framework for clinicians to work within. http://www.nice.org.uk/nicemedia/live/11002/30401/30401.pdf Also - since your GP made the comments - you may wish to report these to the surgery practice manager. If necessary - change family GP. There are plenty around and quite frankly if the doctor/patint relationship has broken down, this may very well be your best option. Keep in touch and let me know how you get on. Should you need legal advice re: the above, again email me via the website and I will be happy to put you in touch with a suitably experienced lawyer who will be able to advise. Take care, Danielle x


TL on 01 March 2013 15:18
I had suffered with and reported the classic symptoms of adenomyosis to my healthcare providers for 6 years before recently being able to self-diagnose it and then have the diagnosis confirmed through hysterectomy and lab results. After my original obgyn treated me with various birth control pills ineffectively, she referred me to a nuerosurgeon. When that didn't solve matters, she referred me to a naturopath who claimed she'd be able to fix things through liquid hormone drops. When that didn't work, the ND passed me over to her Nurse practioner who thought DIM would be the cure. I am so disappointed in our healthcare system and frustrated by websites that indicate nsaids and heating pads will help. The pain that I experienced was barely reduced by narcotics. From my experience and what I've read about others, Women suffer Way Too Long while investing money, time, resources, energy, faith and hope in doctors that are unaware or do not think to diagnose adenomyosis. And some of our most productive and influential years are lost because of it. When left undiagnosed or untreated, it negatively impacts relationships, careers and quality of life. Adenomyosis needs to be brought to the forefront and discussed as much as endometriosis so women are better educated about it and the downstream effects it can have on their lives, and also so that they can better advocate for appropriate treatment in a more timely manner.
Reply to comment
 
Danielle on 04 March 2013 21:48
Hello, and thank you for your message. The points you raise are the reason why I started the global awareness petition. After the age of 35 - women should expect their fertility to change, however so many women who are in their early 20's and even younger are now being diagnosed with this condition, so there is a desperate need to discover which gene or what factor is causing this. Please feel free to sign the petition and pass on the link to others to spread the awareness further. http://www.petitionbuzz.com/petitions/adenomyosisawareness Of course NAISDS will not help an already haemorraging adenomyoma it will only premote more bleeding which will increase the size of the uterus and ultimately will lead to other complications also x Please feel free to email any time - you really are not alone with this condition, and you will always have someone to talk to here x Take care x Danielle x


Teri on 02 March 2013 01:46
Thank you for creating this wonderful source for information, education and support. I'm interested in learning if you or any of your readers have experienced food related sensitivities/allergies in conjunction with adenomyosis? Around the time that I began experiencing the symptoms of adenomyosis, age 36, I also started having reactions to MSG, preservatives that are common in foods like sodium benzoate in dressings/ketchup/fruit juice, caramel coloring. I also became extremely sensitive to salt; my eyelids, lips, fingers swell up so much that the skin becomes stretched tight and it hurts. The naturopathic doctor I was seeing for help with what I now know was the adenomyosis also told me she thought I was celiac. Meanwhile as my adenomyosis symptoms worsened so did my food related sensitivites. Some medications even kick off reactions. I have had to maintain a strict diet gluten free and mainly organic whole foods. I also revamped my cosmetics, lotions, soaps, cleaning prods etc to minmize/exclude xenoestrogens. I never experienced these issues prior to the painful, extra long periods and migraines that came on with the adenomyosis. Do you think there is a correlation? Could it be that my liver was overwhelmed because of the adenomyosis &/or estrogen? If you've heard of this happening to others, does it go away/minimize post hysterectomy?
Reply to comment
 
Danielle on 04 March 2013 21:55
Dear Teri, as you know, I have responded to you privately - however for those reading this - I will put the answer in a nutshell. The liver is - I agree doing it's best to filter out the estrogen overload. The kidneys are struggling to deal with the water swelling or oedema. In short if you try and stay away from any zenoestrogens either in food, makeup, packaging, beauty products etc and follow an estrogen eliminating diet, your body will have the best chance to support you during your journey with adenomyosis. Post hysterectomy, your body will take a long while to adjust and weight loss will be the main priority to help those fat cells also stop producing more estrogen etc x Danielle x


karin on 08 March 2013 15:29
Hi Danielle I wrote on here a couple weeks ago saying id had a transvaginal scan and said adenomyosis.Id then seen a consultant that dismissed the results and wanted to rule out cancer and arranged a hysteroscopy for next week.In the mean time he worrid me so much i paid for an mri myself and this picked up mild adenomyosis nothing more.I have got back to him to srr if hysteroscopy is now necessary and he said mri s dont pick up everything.I had in meantime handed my notice in at work based on both thesr scan one of thrse redults and now he left me confused again.Surely if there was anything else one of these scans would of seen He said i wouldnt get pain irregular heavy periods with a smal area of adenomyosis i am 48 nd perimenopausal though Your comments would be appreciated xx
Reply to comment
 
Danielle on 09 March 2013 23:29
Dear Karin, unfortunately the surgeon may have not been able to see all of the adenomyosis, this is why I always mention to women that they should ask to have an MRI scan requesting that the clinician uses the colour doppler tool to get a better view of the uterus. (The red/white areas show the blood flow through the adenomyoma http://www.youtube.com/watch?v=Mgz4waDpC7A.) The hysteroscopy will be useful since not only will the surgeon view the uterus but a biopsy may probably be taken to analyse the tissue further. I am afraid you can get constant pain from adenomyoma and if you happen to have an adenomyoma near a good blood supply such as an artery, this will mean that your period will be heavier than usual, and you will most likely have larger blood clots also. Best of luck with your appointment. Keep in touch and let me know how things go x Danielle x


Debbie on 12 March 2013 16:37
I'm 38 yrs old and am scheduled for hysterectomy (de vinci) April 1 due to adenomysis/fibroids/polyps,etc (periods are insane, supersized tampon and pad every 1/2 hour). Had an ablation last year, didn't work. Over the past 1 1/2 years I have suddenly gained 60 pounds. I work out 5 days at week at the gym, which includes 4 days with a personal trainer, and I watch what I eat (which no one believes me). Over the past year I have also been dx with Hashimotos. I thought that had something to do with weight gain. My TSH levels have finally gotten below 2 since December, still can't loose weight. Last year in May I also had my gall bladder removed (which was 100% non-functioning and described as a shriveled up cheeto). In July I started having severe abdominal pain again. Doctors pretty much just kept passing me off as the crazy lady, including 2 'big city' GI's. My PCP thought I was faking everything and started blowing me off. I ended up going to our local small town P.A. who convinced me to see the local GI. Took a few months for me to go (I didn't want to hear the 'crazy lady is here agian"). Had positive blood occult test. The abdominal pain never let up and the bowel issues...I won't even explain. Endoscope, colonoscopy all fairly normal. Local GI ran all kinds of blood tests, and ends up I do have genetic markers for Crohn's, but between the scopes and GI series, there's no evidence of any damamge. So a few weeks ago, I go to gyno, hoping maybe he can help. Ultrasound and exam did show that my uterus is worse off that it was last year before the ablation. So I have opted for the hysterectomy since my family is complete. I scanned some previous posts, and some people are saying that they also have nasty GI issues with adenomysis???? That's the first I heard about that link. Is it possible that it's not Crohn's and that my bowel issues and upper right abdominal pain may go away after the hysterectomy???? And the weight gain??? Do most people loose weight afterwards?? And the fatigue....will I hopefully be able to make it through a day without a nap (I'm fortunate enough to work from home, so naps are possible!).
Reply to comment
 
Debbie on 16 March 2013 12:47
Dear Debbie - I have responded to your email personally as this website was affected by technical issues when you sent the message. For the benefit of other readers, the issues in relation to weight gain and fatigue and stomach problems are common amongst sufferers that have extreme symptoms that are late stage, and these subjects are regularly covered on the Facebook page - so please feel free to join the group. Kind regards, Danielle


Lisa on 16 March 2013 01:28
I had a hysterectomy 20 years ago for adenomysis and endo. For the past few years I have been having the same pain in the same place as before my hysterectomy. Any chance it's endo or adeno?
Reply to comment
 
Danielle on 16 March 2013 12:44
Dear Lisa, adenomyosis does not come back once the uterus is removed as there is no uterus wall for it to grow within. It may well be endometriosis which seems to grow in random places anywhere within the body. Please arrange to see your gynae specialist as soon as you can to arrange an examination and investigation x Danielle x


amanda on 22 March 2013 18:39
Ive found your website today and for the first time Im hoping a diagnosis may be in sight. Im 43 with 4 children, always suffered with heavy and painful periods but just got used to living with them. Sterilised 3 years ago and gradually bleeding got heavier and more painful; Im piling on weight despite watching what I eat and exercising. Practically all of my symptoms match those on your website. After a spell of bleeding after sex I was referred to a gynae and after a colposcopy which diagnosed cervical erosion and an ultrasound scan which showed fibroids I was discharged without treatment. I went back to GP who re referred me the waiting list means no appointment until July at least! Every month the pain is getting worse, Im out of action for 2 weeks out of 4 and look about 8 months pregnant. Is it possible the scan didnt spot the adenomyosis or am I just making the symptoms fit?
Reply to comment
 
Danielle on 23 March 2013 10:01
Dear Amanda, it is very possible in short. If you were given a transvaginal scan they would have spotted any adenomyoma. In fact the whole fibroid thing is often given as a diagnosis by someone who has not understoon the readings in the scan and often the two are confused, although if you compare the images you can see that fibroids are more globular in shape. Go back and ask for a scan as mentioned above and explain your concerns. If it is adenomyosis they may want to deal with the preparation for your surgery slightly differently in perhaps offering you menopause causing hormones. This link takes you to what they will see in the scan and there is no harm in you asking to see the scan happening so that you can see what is going on for yourself. If it does look like this, do not be alarmed. The relief you will feel in getting the diagnosis will I know be a welcome thing, but note - look carefully at the way the surface of the uterus looks. It it looks like hundreds of pencil lines scratched across and the adenomyoma areas beat in time with your pulse and go from a pulsating red to white, these are the areas that are haemorraging blood into the walls of the uterus. http://www.youtube.com/watch?v=Mgz4waDpC7A Keep in touch and let me know how you get on x Danielle x


amanda on 23 March 2013 12:43
Hi Danielle and thanks for the quick response. I had a transvaginal scan, but have never received the report, just a brief letter saying I had small fibroids (which didnt tie in with the radiographer who said I had many small and one big one which was difficult to measure). I feel like Im banging my head against a brick wall, I told the gynae of all the symptoms but she said all she was interested in was the post coital bleeding, now Im back to square 1 again. Oh and apparently it wasnt a consultant I saw but a junior doctor! Because Ive been on anti depressants for 6 years I keep getting told to relax more and exercise, not easy when Im a full time carer for my husband plus all this pain. Sorry for the rant, but I dont feel anyone will listen to me, theyre all to keen to pass it off as neurosis. Thanks again. xx


sarah thomson on 23 March 2013 15:20
Hi Danielle and Ladies, I am 39 with 3 teenage children, my first pregnancy at the age of 23 was ectopic and I was left with one fallopian tube. I have always been healthy, that is until I turned 30! I started experiencing painful sex, back ache, long painful periods, shooting pains down both legs, put weight on, bloated all the time, constipation, weight gain, headaches and a general feeling of illness, after 2 laparoscopy's that showed no abnormalities it seemed I was at the doctors more than I wasn't, I kept getting sent home with different pills each time I went, in the end I stopped going as I thought I was going mad! I also thought the doctors thought I was a hypercondricact, I began to experience panic attacks (seems extreme now but I really thought I was going to die from some terrible illness or disease) I was eventually sent to the sexually transmitted disease clinic as the doctor told me I could have a STD! I was horrified as I have always been very careful, I didn't have any STD (I knew I wouldn't have), when I didn't have a partner for 3yrs the pain and painful periods got a bit better, but after putting up with the symptoms and mental torture for 7yrs, I moved house and changed doctors to one in my area, I went to see one doctor and I told them about me and my symptoms and yet again, I seemed to be talking to deaf ears! I met my current partner, and everything was going good for the first 3 weeks then, then pain OH MY GOD THE PAIN!!!! it came back with a vengeance, I was having contractions like labour, it was excruciating, then it would ease off and I would be left with a dull aching on my left side (it would sometimes move over to the right side) it made me feel sick, gradually my periods had become longer (every 2 and a half weeks with a 10-14 day break) the less I bled the more pain I was in, the clotting was getting worse also, I began having really bad mood swings and breaking out in sweats, so again I went back to the doctors and booked into one I hadn't seen before, I explained to him my symptoms and told him I thought I was going through the menopause, he was fantastic, he actually listened and sent me for blood tests, when they come back it showed I was anaemic, I was put on iron tablets for a month, I went back to see him and he then sent me for a scan and referred me to the gynaecologist, I had both internal and external scans, went to the gynaecologist and was told I do not have endometriosis, but my womb looked a bit bulky, as I cannot have hormone treatment nor a coil, the only option was a hysterectomy, so there and then I was booked in, I got my appointment through for the 20th Feb 2013, half an hour before my surgery, the surgeon (who is not my gynaecologist) came to speak to me, and asked me if I really wanted to have this done as the laparoscopy's I had done previously didn't show a problem and he didn't understand why I wanted this operation done! he seemed to think I was ok and said apart from no periods I would still have all the pain and symptoms, I totally disagreed with him and told him to go ahead with the operation, so he did, and boy am I glad I did, the day after, the surgeon came to me and said I had Adenomyosis!and he tried do the op by laparoscopy but had to go through the abdomen, as my womb was really large, bulky and embedded in loads of tissue, when he removed it, it was full of large veins and clots, he said he got it wrong and I had made the right decision and I wont have no more pain. YES!!!! no more pain :) I had never even heard of this condition until now!! during my stay in hospital (4days) I have to say the pain was bad for me (I don't have a very high pain threshold) but the constipation and the trapped wind was so painful, I had 6 of their own cocktail mix drink (peppermint, milk of magnesium and hot water) 2 suppositories and lactulose, none of it worked until the 4th day, I managed to pass a bit of wind and had 2 bowl movements, I thought I was having a baby the pain was so bad. But I also have to say the surgeon came to see me every day, he was great and the nurses was fantastic looking after me. When I got home I was the same for 2 weeks, I was then taking 2 sachets of fybergel a day, they took a long time to work, but they do work, the week after I came out of hospital I had a bladder infection, again that was painful, then in my 3rd week I had a infection which caused pain where my womb was and I also had a brownish/greenish discharge, I was treated for both of these infections with 2 different sets of antibiotics, I am now 4 and a half weeks post op, and I feel great, look so much better, I am not bloated, I have lost weight (I already have my waist line back) no pain and although I am still recovering I have so much energy (cant remember when I had so much) I have to remind myself that I have to still take things easy but I'm getting there, the bleeding has stopped and I get up in the morning happy. The worst thing about the recovery is the boredom, its so crap, I am not one for relying on people as I am very independent, but seriously if you are reading my very long winded storey, it is so important that you have someone there to help you in your first 3-4 weeks post op, if any of you ladies are worried about having a hysterectomy please don't be, I know its early days for me but I wish I was given this option years ago instead of suffering like I did, since the op I have tried to research this condition but I am saddened that there isn't very much to look at, this site has helped me understand that I was not suffering alone and I am not recovering alone either, reading all your storeys is very interesting as are all of your views and opinions, I just wish there was more we could do to raise the awareness of Adenomyosis and to make more women understand that it does exist, I wish I knew about it before my op rather than after. If you have had the time to read my storey then I thank you. I wish you good luck and a good recovery whether you have a hysterectomy or opt for another type of treatment. Sarah xxxx
Reply to comment
 
Danielle on 23 March 2013 18:55
Dear Sarah, thank you for submitting your story. I am really glad that the outcome has been so good for you and I know it will be of great comfort to others too. I will re-post your story on our main Adenoymosis Awareness Month page so that others can read your story xx Thanks again, Danielle xx


sarah thomson on 27 March 2013 12:15
Hi Danielle, I have just applied to tell my storey and raise awareness of Adenomyosis in a UK magazine, if I get chosen would it be ok with you if I give them this website address to help women understand/get advice about this condition? many thanks. Sarah xxxx
Reply to comment
 
Daniellle on 27 March 2013 17:29
Dear Sarah, please feel free to mention the website and pass on the details. If you get published - let us know, we would be happy to feature the story on the website :) Take care x Danielle x


sarah thomson on 27 March 2013 19:00
Hi Danielle, thank you so much and yes I sure will let you know. Thanks again. Sarah xx
Reply to comment


kim hoang on 03 April 2013 17:14
Glad to have found this site...women helping women who are suffering: -Had myomectomy 3 yrs ago to remove 15 fibroids. Some grew back and I was told "adeno". -My period would last 14 days with "flooding" of blood loss which left me bed ridden for 3 days on vicodin and throwing up endlessly from the immense pain and drugs. I would wet diaper size pads every hour and became anemic and not able to eat or walk to the restroom. -My gyno wants to do hysterectomy but I've pleaded so have been on Lupron last 7 months. Lupron reduced the size down by 80% and no period gave me a normal life back. -This last month I've been drinking a lot of coffee with milk and it seems like my fibroid has increased in size to a big orange even on Lupron and that constant cramping. So I'm reducing or cutting out caffeine, milk, sugar to see if I can reduce the size otherwise hysterectomy is inevitable. How sad. -Anybody else have tried altering food habits? I've tried boiling Chinese herbs twice and it didn't work for me but for my friend. I went online to search for foods to reduce estrogen and found this site.
Reply to comment
 
Danielle on 06 April 2013 21:24
Dear Kim, thank you for your message. Yes, many women have tried to increase their iron intake, and vitamin C to help to absorb the iron etc. The most important thing is to find out how much iron you actually need with a blood test. Your doctor will prescribe the necessary medication and will be strict on the dosage as iron can be dangerous to take continuously and you will need to be monitored in this regard carefully. In the meantime, you may like to visit the LIVESTRONG website which has some excellent suggestions on anti-estrogenic diets and how to eliminate estrogen from your diet. This is important, since the adenomyoma produces even more estrogen (as well as growing because of it!). Gentle exercise is a good idea to help the lymph nodes deal with getting wrid of the hormone and even massage can help with this regard. If you have access to Facebook, there are lots of links on the Adenomyosis Advice Association page on things to avoid - food with estrogen being one of them. Keep in touch and take care x Danielle x


Jeanette on 05 April 2013 04:37
Happy to see this site. I always complain that not enough attention is paid to women's issues. Like most of the women posting here I suffered with debilitating pain and bleeding about 20 days out of the month. I always had bad periods but it got worse with each birth. Finally I had a myomectomy to try to save my uterus but had to have a hysterectomy less than a year later because they had grown back and the bleeding became life threatening. It was such a relief to be rid of the pain and bleeding and I would highly recommend it for anyone out there that does not want more children or doesn't think they would be able to have more. I still have my ovaries so I have none of the effects I was so worried about before the surgery. I can still feel my cycle ever month with tender breasts,bloating and water retention though. In addition, I always had bone inflammation, joint swelling and pain and that continues. The weird thing is that I still have some abdominal cramping during my cycle and ovulation. About one year after my surgery, I thought I had a hernia in my belly button. I suffered with it for several months and kept putting off getting it checked until one night blood started dripping out of it. I had it checked and there was a growth there. I had my belly button and the growth removed and the biopsy showed it to be uterine tissue. Apparently some may have been deposited there during one of my laproscopic surgeries (I had several). It's been 3 years now and I have the familiar stinging feeling in the skin around the scar - worsening during my cycle. I fear the worst of course and wonder if this will ever end. I've had 7 operations already (2 non-related) and don't want to have anymore. Has anyone had this problem of it returning in weird places?
Reply to comment
 
Danielle on 06 April 2013 21:30
Dear Jeanette, thank you for your message. Adenomyosis is the condition which only affects the uterus. Its close cousin, endometriosis behaves in a similar way but on the surface of areas and can appear anywhere including the lungs and even brain. I know you must be exhausted with all the trauma of the surgery and investigations to date, but really I would go back at this stage and demand to have a thorough examination to establish whether you have endometrial cells present where you have the issues you describe x The other thing that you may find is that the scar tissue can fuse nerve endings causing random pain sensation and referral pains from other areas within the pelvic region, where the other end of the nerve affected may have some disruption or swelling that is perhaps causing you discomfort around your tummy button. Always ask for a second opinion. It is not normal to be in so much discomfort and your surgeon has a duty to ensure that you are not in pain x Keep in touch and let me know how you get on x Danielle x


Crystal on 09 April 2013 05:26
I was just told by my gynocologist that I have Adenomyosis after I flooded him with a list of symptoms and then an exam followed. He suggested I get an IUD (Mirena) implanted to help subdue my symptoms but that at some point it wouldn't help any more and I would need a hysterectomy. I'm 29 years old and have 3 children. After our third, my husband had a vasectomy. My question is, why put off the inevitable and just get it over with now rather than later? The news came as a shock to me at first. But, in all honesty, I don't need my uterus. My symptoms over the last year have gotten much worse, Ive gained a substantial amount of weight, and almost constantly have abdominal cramping, aching legs, back pain, etc. I feel like I am on my period constantly. My periods have become irregular, heavy with large clotting, and severe menstrual cramping. At this point, although I'm still soaking this all in and researching, I just do not see the point of an IUD that won't help with the symptoms forever and will eventually have to have a hysterectomy anyways. Like I said, I am happy with the 3 children my husband and I were blessed with and he has already had a vasectomy several years ago. Any input or advice??
Reply to comment
 
Danielle Wright on 12 April 2013 10:26
Dear Crystal,the key question here is how advanced is your condition? If you know it is severe and has affected the whole uterus and think that an IUD will not help even for a short while, then find another surgeon who is prepared to support you both with your decision. Your husband meeting with the surgeon may help get the message through. Thereafter if your doctor can also write to the surgeon to confirm that he is happy to support you both, you should be well on the way to moving forward on your treatment plan. Keep in touch and let me know how you get on x Danielle x


Crystal on 24 April 2013 17:18
I'm not sure how advanced my Adenomyosis is...and my doctor didn't say. How do I know?? Symptoms slowing started almost 5 years ago. I had a c-section with my first child in 2002. I did get a second opinion and that doctor also said I had Adenomyosis. As far as a hysterectomy, we over the few options I had and decided that hysterectomy was my best option. He will do it laproscopically. My symptoms get worse every month and every day I am fighting the various aches and pains that come along with it. I was amazed to find how helpful this site was, as most other sites have very little information on Adenomyosis. After reading through all the symptoms on this site, I realized just how many symptoms I had that were directly related to the disease. I didn't see anything about joint pain though. Is that associated with Adenomyosis? My elbows, shoulders, hips and knees contantly ache. I have one more appt with my new doctor (who will also perform the surgery) and then we will schedule my hysterectomy. I'm anxious to get it over with and hoping for the best! I'd love to feel like myself again!


Dawn on 13 April 2013 19:48
Hi :) I was diagnosed with adenomyosis in early March at my follow up appt. From having ablation and the LEEP procedure done. Was and am having many of the same things that most of you do. Cramping, extreme fatigue, bloating, weight gain etc. I am waiting on preauthorization from insurance to schedule my hysterectomy. My big question is do any of you suffer from stomach aches? And also from breathlessness after eating? How bouthot flashes? This condition sucks, I feel for all of you.
Reply to comment
 
Danielle Wright on 15 April 2013 18:23
Dear Dawn, stomach ache is very common since the pressure inside the pelvis pushes against the stomach and also the bowel. The breathlessness may come from low iron stores or anaemia compounded with the fact that the blood rushes to your stomach to help with digestion. Often people feel sleepy after eating and this is often the cause. The hot flushes are also quite common both before and just after surgery. You may find it is helpful to keep a diary and note the symptoms you are experiencing and discuss these as necessary with your surgeon to help shape your treatment plan. x Danielle x


Jo on 15 April 2013 10:28
Hi Danielle. I've asked questions before back in January, but I'm now 5 weeks away from going in for a full hysterectomy and I just wondered whether there's any guidance you can give me of things I should ask at my pre-op. Personally I can't wait for my op, in the hope it rids me of a lot (if not all) of this agonising pelvic pain. I'm sure my MS is making things worse, but I'm counting down the weeks, as if I were going on a lovely holiday! Sad but I'm sure I'm not alone in doing this after having waited 18 weeks for the surgery. Thanks a lot for this fabulous site x
Reply to comment
 
Danielle Wright on 15 April 2013 18:28
Dear Jo, thank you for your message. I have put together a few questions on this website following my experience to give you some assistance as at this time, there will be a million thoughts running through your mind. I have attached a link to that page in the hope that they may prompt you and assist somewhat. Of course every case of adenomyosis IS different, so what I would say is try and establish exactly what they plan to do so that you can include maybe some of the questions from the link that may be approprate to your particular case x Keep in touch, Danielle x http://www.adenomyosisadviceassociation.org/Questions-Pre-Surgery.html


sara on 21 April 2013 22:24
I was diagnosed with adenomyosis in February. At first they thought I had uterine cancer and after a biopsy that showed it was negative they did further testing and diagnosed me with adenomyosis. I am now scheduled for a hysterectomy in a few weeks. I run my own business and have 10 employees. I have no idea what to expect from this type of surgery and when I can go back to work. I am a mother of three, so I am worried about my home life and I am worried about my business and my employees when I am gone. It will be a laproscoptic surgery, so I am just not sure when I can return to work, when I can drive, when will I be back to normal? Thank you.
Reply to comment
 
Danielle on 22 April 2013 11:35
Dear Sara, laproscopic surgery has a shorter recovery time generally six to eight weeks. Abdominal surgery can take up to 3 months recovery by comparison. You will be told that following surgery you will not be able to drive a car until you are safely able to perform an emergency stop (basically when you have regained the control of your muscles and co-ordination) and this has to be confirmed by your doctor - hence why you will be offered an appointment to see your clinician following surgery. This website has the 'Hospital What to Expect and Home Recovery and Rest' pages that give you an idea on how to prepare and what you can do to speed up your recovery in terms of preparing food, resting and the basics about recovery. I can also recommend the HysterSisters website in terms of ongoing support where thousands of women freely talk about their experiences and how they have recovered. The other thing you may like to do is get a copy of '101 Handy Hints for a Happy Hysterectomy' by Linda Parkinson-Hardman which gives some more good practical advice. As far as getting back to normal is concerned, don't expect to rush back and be 100% even when you return to your normal working pattern etc. It varies from woman to woman, but most report that after six months to one year of surgery, with careful sleep/rest and a gradual exercise/good health regime - you have pretty much got everything back to where you were the last time you were really well. I really do understand where you are right now in terms of worrying about the business and getting back to where you want to be, but you must remember this is going to take ALL of your mind control to recover and get over this, and you will do it, but you will need to take time out to rest to ensure that the good work carried out by your surgeon is complimented by your focus on healing and repairing your body x Keep in touch and let me know how you get on, Kind regards, Danielle x


flores on 22 April 2013 09:33
Hi Danielle, Am 40yrs old.I have been diagonized with adenomyosis few years back. After lot of wrong diagnosis it got confirmed 2 years back. I always had irregular periods and heavy bleeding, treated for PCOD. I had 2 abortions and i dont have a kid. I was prescribed with krimson32 for a year, since the side effects were huge on me. I stopped all the treatment and just went ahead with alternate therapy. Last year when i took a scan, the uterus size has bloated up to the size of 3 months pregnancy and i had severe pain in my lower back, exactly on my spinal cord. Now i am prescribed with femilon tablet, i am regualarly taking it and my pain, heavy bleeding has come down tremendously. Only problem is the mood swings. My gyno has told me that by next year, she would stop the pills and go in for hysterectomy. since she feels there is a risk of cancer due to these pills. I don't want to go ahead for hysterectomy. Is there any alternate to come out of this problem?
Reply to comment
 
Danielle on 22 April 2013 13:10
Dear Flores, thank you for your email. From your sympyoms it sounds as though your condition is severe in that it is now pushing on your spinal cord. Obviously some of the medications prescribed for adenomyosis are incredibly unpredictable in their effectiveness and some even appear on the World Health Organisation's list of medications that harm health http://gerardnadal.com/2012/02/15/world-health-organization-data-on-birth-control-pill-and-estrogen-replacement-carcinogenicity/ The latest research that is currently being carried out into MRgFUS technology is really encouraging for those who preservation of the uterus is necessary. I have included a link for you to find out more information accordingly: http://www.mrtherapycentre.com/ In the meantime, do not rule out hysterectomy completely - as you may end up as I did - having no other option. Keep in contact and let me know how you get on x Danielle x


Pamela on 22 April 2013 20:54
Hello-- I am new to this web site and really need support & suggestions. I am 44 years old, have 2 children & was diagnosed with Adenomyosis 4 years ago and just chose to take Provera to stop the heavy, painful bleeding (accompanied by passing fist-sized clots that sent me to the ER in fear my insides were falling out). At that time my Gyn strongly recommended the Mirena IUD which I chose not to do & eventually the bleeding stopped. I get my period about every 3-6 months so didn't really worry about having any serious treatment until now. I have been bleeding now for 30 days, severe pelvic & back pain, weak, tired, dizzy, etc. Once again my gyn is pushing for either the Mirena or a hysterectomy which I am very opposed to. I have my consult appt this afternoon to choose a treatment option & am so worried & stressed out as I have not found any info online of a successful treatment for this condition. Really need support & advice please!!! Pamela
Reply to comment
 
Danielle on 26 April 2013 18:10
Dear Pamela, thank you for your message. As a matter of course, you should go and get your iron levels tested. It sounds from what you describe that your iron store levels may have by now been affected by the blood loss, and/or you may have anemia. Your doctor should be able to prescribe you suitable medication to help you generally and it would be wise to keep a record of your symptoms from now on, if you do not already in a diary so that you can monitor things on a weekly basis. There are some new and emerging treatments and technologies for adenomyosis that are not as invasive as hysterectomy and you should discuss with your surgeon whether there are any trials currently in your area for MRgFUS or the OSADA proceedure both of which you will be able to GOOGLE to find out more. Many women report that the Mirena and other methods of hormonal control/coil do not actually help and that they have found them to be a sticking plaster approach and that the contractions from the condition have often meant that the coil has been expelled from the uterus. There is no one answer for any one woman since everyone has varying degrees of uterine damage from this condition and you really need to trust your surgeon and make them understand that you want their full support no matter which treatment you opt for in the end. If you and your surgeon cannot meet half way, seek another opinion. Keep in touch and let me know how you get on. x Danielle x


Freya Moulder on 26 April 2013 17:04
Hi, not sure if I am posting in the right place. I was wondering if any other women with adeno have spotting, swelling and pain mid month? I don't have heavy periods or very painful ones either but mid month is really quite bad. I had endo in my c/section scar and had Lap surgery 6 months ago to remove some endo and also to fix my scar inside. Since then I have started spotting and bloating and having pain etc. (my OB found the adeno during my op and took pictures of it, it is all over my uterus.) I was wondering if the endo is back or if it is the adeno acting up.
Reply to comment
 
Danielle on 26 April 2013 17:57
Dear Freya, unfortunately 'spotting' is very common with adenomyosis. If you think about the adenomyoma constantly haemorraging into the lining of the uterus, there is also a lot of associated pain and swelling. You will probably find that your symptoms begin two weeks what would be your normal period, and these may continue to get worse right up until the end of your period. Normally women report that with this condition, if they have these symptoms, that they only get a week or so of relief from the pain and other symptoms, before they start all over again x Danielle x


Freya Moulder on 27 April 2013 09:25
Thanks Danielle, so depressing, I have been eating clean, exercising and using natural progesterone cream, but I guess it won't help the adeno, I think I have to go back to have a scan to see if the endo is back, then if it isn't I have to accept that it is the adeno spotting every month, do you have any suggestions to help with the bloating spotting and thrush each month? Do any women ever stop having the symptoms, can adeno resolve on it's own, there is SO much information on endo and just about none on adeno.


Julia on 01 May 2013 01:18
was just diagnosed with adenomyosis. I have none of the classic symptoms of bleeding, clotting, pain, etc. I only had pain last month for a week that was classic for an ovarian cyst. The US found a 2 cm cyst and a fibroid. The doctor suspected that my pain and bloating couldn't coming from such a small cyst. He ordered an MRI and the diagnosis of adenomyosis was made. But like I said, i do not have any of the usual symptoms. My question is, is anyone else asymptomatic? My bigger issue now is muscle or bone pain in my arms, hands, and thighs. Have been to two doctors and both think the two (adenomyosis and muscle pain) are unrelated. DOES ANYONE HAVE PAIN IN THEIR ARMS, HANDS AND THIGHS? All of my blood work so far have been fine but I do have LOW VITAMIN D. Again the doctors think this is unrelated. Very worried. Thanks.
Reply to comment
 
Danielle on 01 May 2013 20:53
Dear Julia, the pains you describe sound very like those that are experienced with anemia and low iron stores -both of which are caused by adenomyosis. Furthermore, the muscle pains in your legs may also be referral pains from the pressure that the swollen uterus is putting on the nerves within the pelvis. For the record adenomyosis can be 'silent' and develop over a period of time with few symptoms. It is a shame that you have seen clinicians that are not so familiar with all the symptoms of adenomyosis, but this is by no means unusual unfortunately. It would be a sensible idea to see whether you can find another gynae specialist who is more experienced to advise you accordingly, and in the meantime arrange tests for anemia and iron stores. Keep in touch and let me know how you get on x Danielle x


Julia on 01 May 2013 21:09
Danielle, Thank you!!! Someone believes me. I figured they must somehow be connected but both doctors quickly disagreed with me. I had my told my gyne just that "maybe my uterus is putting pressure on my spine and nerves". Is there somewhere I can look for a list of gynecologists that specialize in adenomyosis? Not sure I would have the low iron (I don't have heavy periods). I will have to see if that is something that they checked on my CBC. Have others complained of pain in their arms and fingers? I have found a link between low Vitamin D and Estrogen receptors. High Estrogen is considered a factor in adenomyosis. Have others said their Vitamin D is low? Hopefully my syptoms progress slowly and I can make it to menopause before needing a hysterectomy. I read the symptoms go away with menopause. (lower Estrogen?) THANK YOU SO MUCH!
Reply to comment
 
Danielle on 02 May 2013 11:07
Dear Julia, I mentioned the low iron as the adenomyoma constantly haemorrage into the lining of the womb which is what is causing the swelling. Whilst this constant slow bleed occurs this depletes the volume and quality of your blood over time and hence why the iron stores can be lowered too xx The pain that comes from anemia also can be accompanied with numbness and tingling, so it would be a good idea just to discount this in any case x Yes, the vitamin D issue is also connected as the bones/marrow are all affected by anemia in it's attempt to take red blood cells from the body x Yes, by lowering the estrogen in your diet - that will help, but you will need to keep monitoring the condition gernerally - since you already have noticeable symptoms. As far as locating a specialist in your area, if you can send me a message either via info@adenomyosisadviceassociation.org or via the Facebook page, I will be able to post a question for others in your area to indicate their gynae surgeon that has experience in dealing with adenomyosis. I look forward to hearing from you soon x Danielle x


Jessica on 08 May 2013 17:49
Danielle, I have been struggling with irregular periods since 2006. I have visited my GP about every 6 months complaining of extended bleeding lasting 3 weeks or more. She would test me for anemia (which I never had) and send me on my way. Finally in January I went back in on day 31 of bleeding and sever pain. She took more blood work, and after much insisting by me that there is something wrong, she sent me for an ultrasound. The results were inconclusive and I needed to see specialist. Between my initial appointment and seeing the gynecologist, my bleeding stopped and did not resume (in total it had stopped for 4 months). My gynecologist then told me at my first visit my uterus is riddled with dozens of small fibroids and I would see relief with a myomectomy and D&C. When I awoke from my surgery I was told he didn't find any fibroids, my uterus is shaped like a heart instead of a pear, and is full of "adhesions". He said my uterus is a sponge like texture and he believes I have adenomyosis. Yesterday we discussed my course of treatment. My doctor told me I could try mirena implant (which I had already tried in 2006 and it traveled through my uterus and out the other side) or I can just go back on the birth control ring I'm already on (which isn’t controlling bleeding or pain)and wait at least another 10 years then have a hysterectomy (I am 24 years old and he told me that is too young to even consider that as an option, even with my 2 children). I’m so happy I have found your website, it has given me hope that I really do have options to help me control the pain and bleeding. I am a divorced single mother and sometime I feel very alone when dealing with this disease, reading these stories helps remind me I’m not alone. Thank you for raising awareness to this extremely painful disease and giving hope to people like me! I will be seeking a second opinion with a doctor who will listen to me and help me seek alternative options.
Reply to comment
 
Danielle Wright on 13 May 2013 23:03
Dear Jessica, thank you for your message. I am sorry that you have suffered for such a long time, but there is light at the end of the tunnel I promise x On the subject of age and hysterectomy, to be honest - it is completely up to you. Surgeons typically don't want to opt for it if the patient is younger since a lot can change in terms of relationships and desires to have babies all over again. If you are definite that you have finished having a family and you wish to move on to have a healthy life free from adenomyosis, you will need to find a surgeon who will support you. In all honesty it is better to do what you really want, rather than what others think you want, since you will probably regret not acting on your first instinct x Depending upon your location - will depend upon medical services available to you. If you are in the UK - you are entitled to go back to your GP and get a referral to another gynae specialist for a second opinion as you say. You might want to take a family member to support you and to get your message across that you simply cannot go on like this. If you still do not get the support you need speak to the hospital Patient Liaision service (PALS) and explain that you have been sent round in circles. The NHS have a duty to treat and deal with any condition in 18 weeks. If you are located elsewhere oe have private medical insurance, there will be a similar protocol in place however private medical health care providers have set rules and guidelines on services available etc, so good to read the small print and make sure you get all the support you need and are entitled to. I really wish I could be of more help for you right now, but in the meantime, please keep in touch and let me know how you get on x Danielle x


Victoria on 30 November 2013 07:01
Hi, I have suffered with heavy periods since they began. I have now been in chronic painfor the last 3 years. Have been diagnosed with fibroids and had numerous ultrasounds. I have bee trying to concieve for3 years no luck - finally being referred to have a lap n dye to look at things. Still really worried I may notbe able to have children. I am 35 and pretty miserable it feels like I am suffering completely on my own and that no one listens to the pain I am in ,it's very sad.
Reply to comment

Add a Comment

Your Name:
Email Address: (Required)
Website:
Comment:
Make your text bigger, bold, italic and more with HTML tags. We'll show you how.
Post Comment