Adenomyosis Advice Association - advice, support and information on adenomyosis


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Adenomyosis Advice On-line Support Page


Welcome to the Adenomyosis Advice On-line Support page. 
Please feel free to ask any questions.
Kind regards, Danielle x

150 Comments to Welcome:

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Becky on 24 August 2011 21:19
Really interesting site and a condition that I have never heard of before. My mother had a hysterectomy when she was 36 due to 'menstrual issues'?? Is adenomyosis known to be hereditary? I have two daughters who both had pseudo periods when they were a few days old due to my high hormone levels. I have found that many people don't know about this but it is fairly common in newborn girls, makes me wonder if there is a link?
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Danielle on 24 August 2011 23:09
Hello Becky, thank you for your feedback, and thank you for your questions. Your question regarding the hereditary link is an interesting one. Personally, I was not told that Adenomyosis was hereditary. I am 38, and my symptoms appeared when I was 36. Going back through my family's maternal side five generations, I have discovered various similar hormonal 'issues' starting at around the same age throughout the five generarations, which ended in either hysterectomy or at worse inoperable womb cancer later on in life. I think the medical world ARE finally waking up to the fact that we are more likely to inherit various conditions by our 'inherited DNA fingerprint'. Adenomyosis appears to be triggered by an overload of estrogen that has no-where to go, since it gets trapped in the muscle tissue and does it's damage. Critically, in most women, it is the peri-menopause where the incidence of estrogen increases, and it is only when the menopause begins, or pregnancy occurs, does the condition susbide naturally. On pseudo periods, these are more common than people think, and yes I agree, the high levels of hormones from 'mum' cause this to occur, and there could well be a link/or an undiagnosed hormone imbalance prior to the pregnancy in mum or maybe it is simply that it is a natural by-product as part of our normal development as per this week's BBC2's Horizon: (36 mins 9 seconds) http://www.bbc.co.uk/i/b013ywz4/ . Maybe someone out there can advise on that subject further? ~ Danielle x

Donna on 25 August 2011 23:23
Hmmm your story very much mirrors my own. Since dx I have spoken to a couple of women who more than probably are suffering too. It took 2 years for me to get a Dr who KNEW what I had. It was a happy day, I was starting to think it was all in my head!! Then it took 6 months of arguing for a hysterectomy. No I didn't want implants, pill or patches. I just wanted it OUT. Great job you are doing here Danielle. Will bookmark for sure. Donna x
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Danielle on 26 August 2011 00:20
Hey Donna x I am so sorry to hear that you have been through the same nightmare. It's this that I was in fact most dreading to hear, that other women out there would be suffering and fighting all the way too. I have to say the only drug I was offered was an injectable hormone blocker for three months to 'bring on' an early menopause, and that was only really offered so that they could see whether the hormone would 'positively' improve the symptoms so that they could see WHETHER it really was Adenomyosis (!) and that was AFTER the lovely nurse had actually spotted the condition. Not really much of a help. I was like you, not interested in the 'sticking plaster' approach, since there is a family history of DVT, and in any case the excess weight was now weighing my spine down. Immediately after the op I was 8lbs lighter - and since then - I am zooming back to my previous dress size that I was for 20 years :)))) Thanks for the feedback by the way x Spread the word, let's get people talking! ;o)Danielle x

brandy on 15 March 2013 17:57
I went to the doctor a year ago after 2 mri, 3 Ct scans, numerous ultrasounds with no results. I am beginning to think it is in my head. I stopped going to the doc about 6 months ago because I could not take them saying all my tests came back normal but here are some pain pills. I don't want to mask the pain with pills I want it to stop. I am going to the doc today becaise the pain is so bothersome I cant enjoy having sex with my husband because I know I will be in pain for days afterwards.

Christina on 26 August 2011 00:58
Hi Danielle, I'm 26 & was just diagnosed with Adenomyosis last week when my gyno did my 3rd laparoscopy in the last year for my aggressive endometriosis. It wasn't there when he did the last one 6mths ago & now my uterus has enlarged by the size of a pear. I look 4months pregnant & have constant daily attacks if what I describe as labour pain. A small amount of endo was removed however The laparoscopy failed to relieve any of my pain as the Adenomyosis is deep in the uterine muscular walls. He said I need to have a hysterectomy but knows I want to finish my family first. The only thing that he said could help is a mirena which ive tried before & had to get removed because of the excruciating pain it caused me & I refuse to go there again. Enter real dilemma. I have a 2yr old & hubby walked out over a yr ago. I would be absolutely devastated if I could not have anymore children but without a partner in my life it seems my only option is to use a donor. I cannot function with this constant pain & i worry that the worse it gets & the longer I leave it, the more trouble I will have trying to concieve & complications during pregnancy. I have tried to find information about Adenomyosis & pregnancy but there doesn't seem to be much research out there. I was wondering if you knew of where i could find some reliable information on this. Also, I have seen some sites selling natural progesterone creams-progesterelle (yams & coconut oil). Is there any research that these kind of things might help with the pain or just a scam? (i am already on Naproxsyn 1000 SR daily). I have some big decisions to make & I am completely overwhelmed & everytime the pain comes it's a constant reminder & pressure to make a decision. I can't live with this pain but I can't give up on children. Please help.
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Danielle on 26 August 2011 20:56
Hello Christina. Firstly, I am very sorry that you have been diagnosed with this condition so early on. (I too had one child, separated and circumstances pre and post my diagnosis, meant for me it was too late for any more children). I truly understand the pain you are facing and the sadness it can bring. Being positive, time IS on your side. Becoming pregnant produces a good supply of hormones which CAN temporarily halt the progression of the condition. If you do decide upon having another baby, remember not every case of adenomyosis is the same or as severe! I have put three new links under the 'Useful Links' heading on Adenomyosis in Pregnancy, which I hope may be of interest to you. As for remedies and research, coconut is very high in fat. Estrogen gets trapped in fat cells and fat cells produce estrogen! http://en.wikipedia.org/wiki/Estrogen Yams: my instinct would be to eat them as part of a regular healthy diet rather than using creams that have not been tested a under controlled environment, since it seems the yam creams may not actually work either: http://www.drweil.com/drw/u/QAA263507/wild-yams.html Synthetic progesterone creams do seem to work, however again the strengths and way they absorb is not an exact science. People come in different shapes and sizes, (body mass ratios etc), as do hormone levels, which as we all know with this condition, fluctuate from one person to the next. I too was tempted by these creams, but realised that my estrogen levels were far too high to control with just a cream. After much research, I have modified my diet, to counter-balance the tumour's production of estrogen. I have included more brassicas (cabbage, broccoli, cauliflower) which naturally help the body extract the hormone, have taken more calcium suppliments, and cut out the estrogen pumped milk that as a family we enjoyed every day, to lessen the effects of the bovine hormones. I have also decided to wait post surgery to see after tests whether it is really necessary in my particular case to use anything chemical to balance the natural estrogen. It would be great to hear from anyone else who has had success in controlling their symptoms NATURALLY. I hope you find something useful in the above. Please take care, and keep in touch. Danielle x

Danielle on 08 September 2011 14:03
Hi Chistina, just wanted to point you to some research information that has just been made available to me regarding pregnancy. I have included the link here but it is also available on the latest research page http://www.infertile.com/inthenew/sci/2010-09-RBMO-adenomyosis.htm Hope this gives you a little more hope x Danielle x

Suzanne on 26 August 2011 19:10
Danielle, thank you for creating this site. Hearing that you lost weight immediately after surgery, and continue to loose is quite encouraging. I should be hearing from my OBGYN's office today as to when I can schedule surgery. I plan on a partial,having it done via lap, and keeping the one ovary I have left. I'm nervous, which is why I've been putting it off, but it needs to happen. I'm so done dealing with this.
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Danielle on 26 August 2011 22:25
Hi Suzanne :) - Planning for surgery is excellent news and it is natural for it to be a very nervous time, but good to hear you are well on track regarding your treatment. Being in control of this condition is important, and part of the battle. Keep us posted. Take care x Danielle x

Caroline on 04 September 2011 14:18
Hi, your website is an amazing resource and I only wish there were more of them. I was recently diagnosed after suspected endometriosis, this was an easy diagnosis im glad to report. I've been looking into research trying to figure out why I have this condition as I have no children and have never been pregnant. However I was sexually abused as a child and I have read some stuff that suspects this or rape as being a possible cause. Research I have seen so far has been inconclusive or it does not focus too much attention in this area. I was wondering if maybe you have come across any research that might shed some light on this fir me. Thank you
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Danielle on 05 September 2011 17:52
Hello Caroline, and thank you for your feedback. Glad you received an easy diagnosis,that IS reassuring to read. Regarding the condition generally, the word 'trauma' is always used in relation to it. I have located some information in relation to gynae related trauma (please see the link below) which may be of interest to you. In the meantime, keep in touch and I hope you receive the necessary treatment you need to make life comfortable and pain free soon x Danielle x http://urogyn.org/documents/Pelvic%20Pain%20Review%20PaulsonGorCPP.pdf

Woman Warrior on 13 September 2011 03:27
I was just diagnosed with this last week during an ultrasound. I also have endometriosis and after this diagnosis I also found out that my mom had both endometriosis and adenomyosis. My RE didn't say specifically if it's hereditary or not but when he found my mother had it too, he was much more confident that I also have it. We are about to start fertility treatment in a few months and I am so nervous about this added factor though it makes so much sense why my periods and pain have been the way they've been! Thank you so much for this site. There is SO little information out there and I hope to learn more from here and from others so we can increase the knowledge that's out there!
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Danielle on 14 September 2011 22:36
Hello Woman Warrior on Wednesday, September 14, 2011 10:35 PM I am glad that you have found the website, and am sorry to hear that you have both conditions. There seems to be a lot of information out there now indicating a strong DNA/family link. I am very much wanting to push the boundaries on getting more of the medical profession talking about adenomyosis and can confirm a healthy number of NHS and other international medical authorities have added themselves to the Twitter site. Thank you for your feedback and all the best with the fertility treatment. Keep in touch x Danielle x

Tove from Norway on 10 October 2011 20:42
Hey, and thanks for your interresting site! Im 40 years old, and mother to 2. I was diagnosed endo via lap last year, but rejected to start hormonal treatment (I also have "Factor V Leiden"). Now my pain is stronger again, and Im waiting for another visit at the hospital. After reading your history, I will ask my doc about adenomyosis as well. Even before I found you site, I wounder about having a hysterectomy, but I am affraid of the side effects - early menopause, lack of desire ect. What are you experiences?
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Danielle on 11 October 2011 18:34
Hey Tove, thank you for your post. As you are aware there are a number of different types of hysterectomy, and each is done for different reasons. In my experience, I have suffered no side effects since I still have my ovaries, so will still go on to have all the correct hormones until my body clock decides. I did not suffer any 'shock' to the hormones post surgery, which I was expecting, I have since had two 'invisible' monthly cyles, with a little PMS as I used to have, which is reassuring! The scar has healed beautifully and in truth it cannot be seen at all, it is so neat. It has been such a relief to have absolutely no pain, a great night's sleep and go back to my original body shape, and feel like myself again. As far as lack of desire etc, don't read the horror stories! I have not noticed any negative changes in that department. I do not have ANY regrets whatsoever, and can only advise any woman experiencing such tremendous constant pain, once they have finished having children, to go on and have a hysterectomy. It would be a good idea to get checked for adenomyosis in any case, since if you do have it, it can grumble on whilst all the hormones are there well into the menopause,and make other things like your endometrosis and FVL far worse. Best of luck at your next appointment. Keep in touch. Danielle x

Hejaw on 09 November 2011 02:37
Danielle, Thank you so much for putting so much into your site and gathering this info for us women. I am 40 w/3 children. I was diagnosed with Adenomyosis a few weeks ago (post endometrial ablation 2 yrs ago for extremely heavy periods). I also had a blood clot that my GYN thought was causing the pain and discomfort so she did a D & C, I think out of hope that it was causing the pain. 2 days later I was in more pain than prior to procedure...so I am now scheduled for Hysterectomy 8 DEC...I am in daily pain and cannot do a full day at work...which is frustrating to someone who never takes a sick day. Luckily I work with some great men who are very sympathetic. Do you have any suggestions for coping with the pain until I get to the surgery day. I cannot take narcotics they make me feel too loopy and none have helped the pain either. 800mg Motrin help some but not completely. thank you for making feel like I am not the only one going through this and I am not crazy. I was lucky to have good drs who sent me right for an ultrasound and MRI after my description of problems. Thanks for all your research Heidi
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Danielle on 10 November 2011 19:32
Hello Heidi, Well done for finding the site and thank you for your feedback. Unfortunately I can completely understand your frustrations regarding work only too well! I am glad you are on target for surgery for the 8th December and am happy to give you a few tips that I found useful. Being sensitive to quite a few pain killers myself, I found the only safe and easy medication for me at the time was good old paracetamol, although even then, I was not able to take this every day since that too would upset my tummy. What I found helped the most was wearing clothes that did not restrict during the course of the day. I set about getting (and I know it sounds expensive but I got all my stuff from ebay!) maternity jeans/trousers in three sizes. I would start off at a size 12 in the morning, and go up to a size 14 or even 16 by the end of the day (just before my hysterectomy) since the womb was so heavy and swollen and pushed against my bladder and bowel (and that was on top of the estrogen fueled water retention!). I would reccomend doing regular walking for exercise, if you can manage at least half an hour a day, as it will help you deal with the surgery far better and you will benefit in terms of good circulation which will help you feel a little better. Also take a really good multi-vitamin with the standard guideline reccommendation of iron - 14mg, which, if you are not needing iron tablets for anemia, will help keep your iron stores generally happy and again will help you feel less tired. I found hot baths would aggravate the blood circulation in my tummy and would make me feel even more tired/faint which was not ideal! Get as much sleep as you can. I was constantly napping all day and was asleep for the night by 8pm and slept through till the morning, but apparently I would be in pain all night and moaning and crying in pain in my sleep(much to my poor husband's distress). For extra support at night, I did find a 'V' shaped pillow good to pop behind the lower spine to support prior to and post surgery. I bought mine on Amazon for under £10. Massage did help, particularly at night, (clockwise motion on tummy with a nice relaxing oil (lavender) in a carrier oil (almond oil)). When the pain was particularly excruciating, I relied on the labour breathing techniques that I used many years before when I gave birth to my daughter, since I would experience sharp hard contractions, sometimes with little warning. To minimise the constant pain and spasms in and around the cervix, I only used pads as opposed to tampons etc for comfort. Other than that, I did try and up my fruit and veg content to make sure that I was not adding to the constant pain with constipation! Basically if you revert back to a mindset of being pregnant and post surgery (as in post pregnancy), dont push it until you are three months post, and then take things gradually, and you should find you will be pretty much back to the old you and more importantly PAIN FREE! ;o) I hope that helps a little at least, and I wish you all the very best with the surgery x Keep in touch, take care x Danielle x

Michelle on 30 November 2011 00:16
Hello, I'm Michelle and i'm 24 years old. I was diagnosed with Adenomyosis in 2009. I have 2 beautiful daughters. I have been asking for a hysterectomy since coming to terms with it would be the only way to have a somewhat "normal" life. I want to be a normal energetic young mommy. But can't with the constant pain and being exhausted. I've seen 2 ObGyn's, i wanted a second opinion. My Doc wants me to try every possible solution before he gives me a hysterectomy. So i had Mirena inserted sept 13 2011. He is giving me 5 more months to see if i have any difference and for me to get the full effect of the mirena. So waiting is not fun, when you want a life back!!I have noticed a new symptom, i dont think it has anything to do with adeno but i think it's endo. It just never stops!! Maybe one day Adeno will be taken seriously!! :) Thank you
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Danielle on 30 November 2011 12:31
Hi Michelle, thank you for your message. I am sorry to hear that you have been in pain and suffering for so long. I appreciate the stress that being given medication such as the Mirena adds to the already miserable situation you find yourself in. With this condition, it seems to be the general consensus that only if you have finished child bearing that then the clinicians will support your decision to have a hysterectomy. I agree, one day the clinicians may actually realise that if you are prepared to have such a final proceedure (all things considered) that the patient MUST be in considerable pain and/or discomfort even to consider such a life changing type of surgery. As I understand it, hormone treatments are often administered in order to indicate a relief of the symptoms - more as an indicator to the ObGyn's that the new level of hormone (usually progesterone)introduced has shown that there is an imbalance of estrogen that in fact that is driving the disease. If you have had a scan showing the blood flow fluctuations within the uterus (in colour), this will indicate to you at least, that the condition is definitely there. Please take a look at this image for reference of what to look for on the screen (if you have not yet had an ultrasound like this) http://www.ultrasound-images.com/images/Adenomyosis-1b.jpg. You cannot be on hormone replacement indefinitely either since this is VERY dangerous to your health, and no health professional or well qualified ObGyn would ever knowingly put you at risk in this regard. February is not far away in terms of your Mirena, but also watch out for any discomfort that this may give a potentially already swollen and upset uterus. In my case, I collapsed with the pain of the coil after it had been in for about a year, and following that I had my TAH. Take care and keep in touch x Danielle x

dom on 04 December 2011 18:11
thank you for the site , ive recently been diagnosed after approx 10 years of being in pain.I pretty much have all the symptoms have seen countless doctors and had countless tests but now ive been diagnosed it makes me feel like a) im not going mad and b) something will be done. As its a degenerative disease im pretty much living my life as a reclusive 90 year old (im actually 34!) but this will hopefully change in febuary when i have a endometrial ablation. Ive found a fantastic surgeon/gynae doc who wants to try this before the hysterectomy and the best thing about him is . . he actually listens to what im telling him.Ive tried to find out about this condition and this website has been a godsend xx
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Danielle on 05 December 2011 11:38
Hi Dom, I am so glad that you found the website and that it's been useful to you so far. I am so sorry to hear that you have been in such pain for ten years, but it's great news about the treatment you have planned in February. Really is good to know that you now have a supportive surgeon who can help you move forward in terms of treatment and finally someone is helping you get back to the real you. If there is anything else you need in terms of support, please message again. Keep in touch. Take care, Danielle x

Carolyn on 14 January 2012 10:21
Hi, firstly what a comfort to find that there are others who have lived through and improved after this miserable condition and that I am not alone. Image suffered for eighteen months from flooding, clotting, cramping, back pain, excruciating labour pains and shooting pains down my legs. One day whilst driving I pulled into a walk in centre and collapsed in a heap, and was transferred to hospital where they said I had a bulky uterus and small ovarian cysts but could see no reason for the pain. A laporoscopy where severe pelvic adhesions were identified was still inconclusive. The bleeding which has been continuos for the whole time stopped for ten days then returned with a vengeance. The contraceptive pill was prescribed but did nothing. Then tranexamic acid, norethisterone and co-codomol have at least meant I can work but the pain continues, the bleeding continues to wreck my life and my relationship is I tatters as the thought of sexual contact around my tender bulky uterus sends me running for the door. At the end of my tether I went to the doctor and cried my eyes out in the surgery. Another scan, another bulkyuterus diagnosis, but the sonogopher said I had a four month pregnant uterus, unexplained shadows and a 16mm endometrium so I now have a gynaecology appointment this Thursday. I want this over and I KNOW this is adenomosis and not all the other rubbish I keep being told. I have had two emergency ceasareans, am 47years old and fit the profile exactly but not one person has mentioned this condition. How do I make this end and insist on a partial hysterectomy so I can have my life back? Your help would be enormously appreciated xxx
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Danielle Wright on 15 January 2012 23:19
Hello Carolyn. I am terribly sorry to hear about the suffering and discomfort you have been through. Your symptoms and the problems you have been facing certainly sound to me suspiciously like adenomyosis. On Thursday I think you should mention that you have found this website, say that no-one has ever mentioned or checked for adenomyosis. Ask them to do a transvaginal examination if they can (where the camera goes into the vagina on a thin probe and looks up through the vaginal wall, up through and across the womb and up to the ovaries. For your own information have a look at this colour doplar image of what it looks like http://www.ultrasound-images.com/images/Adenomyosis-1b.jpg) When they do the test, ask to see the screen as and when they do the test and you will know what they will be looking for, and if you have adenomyosis, the areas that are brightly lit up will pulse and you will see where the blood flows around the areas. If you get any resistance re: being tested, ask to speak to the head of the department and say you think you may have the condition, or better still, get a second opinion from another gynaecologist via a re-referral from your GP. In my experience, the gynae teams were aware of the condition, but unless a specific request to check for the condition is actually on the notes from your GP -the radiographer may not know to look for it. Furthermore, if the radiographer is not gynaecologically trained they may need to ask for a colleague to assist. My radiographer asked for a gynae nurse to check what they were looking at, and was I pleased that the second opinon was sought and obtained! As far as requesting surgery, if you have completed your family, it is you and your gynaecologist's decision to agree that surgery is best for you. Usually your GP writes to the surgeon requesting the surgery you need although in my case I also wrote separately explaining how the condition was wrecking my life, since by then I could not even work. In my case the weight of my womb was now playing havoc with a previous spinal injury I had suffered, so my spine now had so much pressure on it, that I had not only lost an inch in height, but I was also was having problems with the nerves in my face, neck, back and down my arms and legs. I was offered hormones to try and bring on the menopause and to indicate to my surgeon that it was adenomyosis (even more), but I refused because I was/still am lucky that my ovaries were ok, so really did not want ANYTHING interrupting their essential work! I know all this is probably quite a scary prospect at this stage, but at least if you know for definite either way - whether you have adenomyosis or not, you will be able to move forward and make the decision which is best for you x Best of luck on Thursday, if you need any more assistance, please email again. Take care x Danielle x

Carolyn on 23 January 2012 22:31
Thank you Danielle unfortunately I went to see the Consultant and am being admitted this week for Novasure endometrial ablation. I explained I didn't think it would work for adenomyosis and that the symptoms would return but he said we had to try all avenues before major abdominal surgery. He thinks I may have 'some ' adenomyosis but is unconvinced this is the source of the problem. He says e cannot rule out cancer and will conduct an urgent hysteroscopy under a general anaesthetic and if he can do the ablation there and then he will. He was VERY persuasive that he can sort this out but I am most wary of going through a procedure needlessly if it won't deal with the problem? Thank you for all your advice and I will make the suggestions you have given and see what response I get? Kindest regards and so sorry to hear of the suffering you endured. Kind regards Carolyn
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Danielle on 23 January 2012 23:54
Hi Carolyn, was wondering how you got on x It sounds like you are in safe hands to be honest, and if that were me, I would have tried the Novasure if it had been offered to me. If your surgeon is testing for cancer and testing yet further beyond that, that is excellent news. I had two inconclusive laps and had to wait till after my hysterectomy to get the cancer 'all clear'x I think you will have a clearer idea of what your options are following the abalation, which will make things a great deal quicker and easier for you to make your next decision, and who knows the abalation may actually do the trick or help considerably. Either way - fingers crossed for you x Keep in touch x Danielle x

heather baade on 05 February 2012 16:31
have been having pain and sympothys for 3 weeks now .finally on pain meds not helping alot . Just was wondering how do I go about getting surgrey to happen ? I wanted more kids but now I think this won't happen either . to much pain and all the other things and 2 cycles in one month also .any help is needed .
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Danielle Wright on 06 February 2012 18:56
Dear Heather, the best thing to do is to get a referral from your general practitioner to a/your gynaecologist and to discuss your options from there. Different specialists appear to have different methods of treatments and once you have a clear diagnosis of adenomyosis you will need to confirm to the surgeon that you are completely ready to begin any type of treatment, dependant on how severe your case is. Hysterectomy is a very BIG step to take, and since different treatments offer different benefits and recovery times etc, there will be a lot to consider. Make an appointment with your doctor as soon as possible x Good luck x Danielle x

Jennifer on 06 March 2012 19:47
I was recently diagnosed with adenomyosis after 7 yrs of being told I had Endo, with treatments and surgeries geared towards it despite inconclusive pathology. I have to admit that I am beyond excited to finally have a diagnosis that matches my symptoms much better. Weight off one shoulder with another rock put on the other thinking about treatment. I am only 27 but have had all the kids my husband and I would want. That being said, I was for the past year hesitant to have a hyterectomy just because of the emotional attachment to this thing that causes me pain but makes me a woman. My new specialist has highly recommended I just go for it and have a partial hysterectomy via vagina and while I agree that it will come to that point sooner than later , I am curious if there are any other successful treatments that may be able to hold this off for awhile. I have just started progesterone on top of the Mirena IUD I already have, but with research it seems that neither would be beneficial to the diease, thoughts? The step after this, should the pregesterone fail is to remove the IUD and following that, the hysterectomy. Unfortunately, I still find with the progesterone that I am in a lot of pain, whether wrsened by the hormone or just because the pain has been getting worse and worse dramatically past few weeks, so I ponder if this is even the right guideline for me. Oh the questions and questions and questions!~
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Danielle on 12 March 2012 01:18
Hello Jennifer. Thank you for your question. It is one which many women are often left deciding without deep discussion. My honest opinion is - dependant on how advanced the condition is, it may not be in every case appropriate to take hormonal treatments. The tumours grow because of the excess estrogen, however they also produce estrogen. Put simply the tumours should not be there and should be removed. To pump extra hormones into the body on the face of it seems to halt the growth of these things, BUT hormones cannot be taken and will not be prescribed indefinitely. Once the tumours are embedded deep in the womb, they will bleed constantly. Nothing will stop that particularly when they are located next to veins and other blood supply networks. Progesterone, Zoladex and other drugs make the body go into an artificial limbo/menopause ~ which in itself has body changing side effects - changes in moods, weight gain etc. Really you must assess how far the condition has spread in your case. Regarding the feelings in relation to being a woman etc, I have often pondered the feelings I felt after the loss of my womb and it is something that you do have to come to terms with in your own way. I have looked at it in this way, in that I was born female, and my body has served me well - my child was a blessing, and just maybe I was probably not meant to have any more. Yes I grieved - you need to. I have no pain now and no fear of getting womb or cervical cancer. My body has fully healed and I am able to focus on what is important in my life rather than being aware of my body all the time and feeling helpless and unable to do the most basic things. When I look back, I have realised how the body copes through extreme pain and the pain was my body telling me something was very wrong. Adenomyosis hurts SO much, and if you cannot take morphine (as was the case with me) you have to do something to stop the condition! My advice would be to book an appointment with your specialist/or at your next scheduled appointment, get them to show you the full extent of your condition - pictures/photographs etc - so that you can make an informed decision as to which treatments they have available for you based on your location etc - since this varies greatly. The HysterSisters website is very helpful in putting you in touch with others thinking through the hysterectomy process (if you have not already found them). Here's hoping you get relief from the pain and disruption soon. Keep in touch and let me know how things go x Danielle x

Bernadette on 10 April 2012 14:20
Hey Danielle, this site has been helping me so much! I went through many tests after being admitted into hospital for being in so much pain, which the NHS put down to period pains. I then went privatly and saw many different specialists. After months of pain i got reffered to dr pakarian, who diagnoses me straight away with adenomyosis. I was so relieved after having endoscopys, laprosopies and much much more! I recommend dr pakarian very highly, as he has helped me a lot. Recently i have also been told there is a possibiltiy of endometriosis after describing more sypmtons to him. I find the worst part of my adenomyosis is the leg pain i can get with it, i also suffer very badly with tiredness. This page is fantastic! If there is anything i can do to help, please let me know. Bernadette
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Bernadette on 10 April 2012 14:24
I have also put on 2 and a half stone in weight in 6 months, which is still increasing. I am very careful with what i eat because of this. If anybody has any useful suggestions i would be greatful.

bernadette on 10 April 2012 14:41
the main thing i wanted to say was that i am online 19 years of age, incase there are any other suffers out there who are so young. Because of the treatment options (hysterectomy) its hard knowing its a while yet before anything can be done.

Danielle Wright on 11 April 2012 11:07
Hi Bernadette. Thank you so much for posting your messages, and I apologise for not being able to respond sooner - hope you had a lovely Easter x I am thrilled to hear that you have found Mr Pakarian. He treated my adenomyosis with my TAH, and I owe my life to him. I too had an estrogen fueled body which and my overall increase in weight in the last six months of the condition was around the same as you are reporting. I look back on my wedding photographs and it makes me really sad, since my whole body was under so much pressure from the condition which had yet to be diagnosed, and I had not changed my diet or eating pattern and was three whole dress sizes larger and could not work out why. You have to remember, it is not what you are eating nor the quantities, it is the way the estrogen is constatnly being manufactured by the tumours which in turn convert the carbs incorrectly, affecting and putting your other organs under immense pressure, causing odema (water retention)and in my case, also putting pressure on my spinal cord. It also affects the way your body produces insulin etc, so you will feel the shakes when you have missed a meal or overdo any exercise. My advice is really to try to cut out any dependance on white sugar and opt for honey (you may think this radical, but it is a more natural form of sweetner and not highly processed or bleached etc). Go for as estrogen free diet as you can manage, and eat things that help eliminate the hormone. This website is fantastic at giving you the low-down as to what is really going on with estrogen generally and gives some excellent advice: http://www.livestrong.com/article/70189-estrogenic-foods-avoid/ Remember though, unless the adenomyosis is removed, the estrogen will continue to dominate. I am always talking about the OSADA proceedure, where the adeno areas are removed, but I only learned of this proceedure during recovery from my TAH, and this proceedure is really quite a new technique. It may be worth discussing? Only now nearly eight months following my surgery has the estrogen finally started to work it's way completely out of my lymph nodes etc. This is something that is rarely discussed. It is painful and requires gentle exercise to clear the lymphatic system since as you may be aware that system relys on good circulation, and whilst you can't walk because of the agonising pain in your tummy and legs, and probably rest well, the estrogen stays in the body. Finally, thank you for volunteering your services regarding communicating with other young women via the AAA website. This is my aim, to get other women networking and communicating together, to make each of your/their journeys a little easier. Please feel free to sign the petition if you have not already and pass on the link to others to create more awareness http://www.petitionbuzz.com/petitions/adenomyosisawareness . Take care and keep in touch x Danielle x

tina dimmock on 24 May 2012 15:14
Can anyone tell me if this condition causes pain in your legs
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Danielle Wright on 27 May 2012 09:42
Hi Tina, yes adenomyosis does cause considerable nerve and muscle ache down either or both legs, lower back and spine. Danielle x

Nancy Johnson on 03 September 2012 20:59
I was dx'd with Adenmyosis about 4 years ago, and was told that that once I reached Menopause, that it would most likely go away. This month about 7 days away, I will officially reach menopause. I have had severe low back pain on my right side, that goes down over my right side of my sciatic area, down my calf to the bottom of my right foot, with numbness from my calf down to my foot, with the foot with the most numbness. I was recently told from my doctor that this could be what is causing all my pain, due to MRI'S and other tests do not show anything other than slight bulges in my L-4 and L-5 disk. I recently had nerve studies done, which showed I have nerve root damage to my L-5. I have had accupuncture done, Spinal decompression done at the Chiropractors office, and tons of neurologically tests done, that did'nt confirm anything that can be treated surgerical. I have had epiderals done as well with no relief. I have been told by 2 gyno docs and my pain mananagement doc that my pain may be due to the Adenmyosis. I pray that this is it. I have put on about 23 lbs in the last 2 years, while trying to do weight watchers, where in the past I have had great success, but I have noticed it has not worked as well as in the past. Most of my weight gain is in the stomach area and my arms. I have always been pretty close to my normal weight until the last 4 years. All of these doctors believe a hysterectomy will help me with the pain in my lower back and legs. I always feel bloated and my stomach is extended in the lower belly area. I always feel like I need to use the rest room to urinate. Thanks to everyone for all their information. Does anyone else have symptoms with the back and legs that cause numbness. I did fall in 2008 and had huge bruies over my right upper thigh the size of a dinner plate and a bruise the size of a saucer on my calf area, that lasted about 6 weeks. So I thought this was the cause of my back pain, although I did not have immediate pain, it happened about 2 to 3 weeks after my fall. Thank you all for all your information. It is wonderful having a site like this. It has answered alot of my questions about so many of my concerns.

Hannah on 02 June 2012 00:46
Hello Danielle! What a wonderful site. I was diagnosed with adenomyosis by one gyno this month and since it has been a confusing roller coaster. I've had two opinions; one says adeno, another gyno told me I could simply have a uterine infection and put me on antibiotic. A registered nurse told me that diagnosis was obsurd and that my symptoms are all classic adeno, which they are. Lots of pain the week before and of my cycle and some level of pain pretty much all month, a feeling of great pressure in my bladder and lower back/bowel, a stabbing pain if I'm not careful how I sit, pain with intercourse, etc. I've always had heavy, irregular periods with clots. I was put on the pill at 18 because I was having 2 periods a month. I have one child and wanted to have another but am worried about being able to carry the baby. I had no trouble conceiving my first, but I had a C-section so I'm worried if adeno is present I might have a uterus too weak to carry a child. Again, I have conflicting info on this; 2 docs have said it's nothing to worry about, and one has said miscarriage and uterine rupture are more likely and if I decide to get pregnant, I need to do it ASAP and need to be considered high-risk. This scares me to death! And I'm only 29, so I don't want a hysterectomy. From what I've read, I believe I have adeno, but know one has really "confirmed" this. Should I pushed to get an MRI? My regular gyno wants to do a hormone panel blood test at the end of the month. She took me off the birth control pill I was currently on and is waiting for it to get out of my system before doing the test. Pills have never worked long at controlling my symptoms and I had the Mirena but it had it removed after a year of severe pain with it and I spotted all the time. Any advice or suggestions you could lend would be greatly welcomed! Thanks so much for this site!
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Danielle Wright on 07 June 2012 20:11
Hi Hannah. Since you have conflicting reports and no-one has shown or told you about the adeno after seeing a scan of your uterus, I suggest you might like to visit your GP and explain your concerns regarding achieving a full term birth. If you request a scan to establish the presence and indeed extent of the adenomyosis it will show that you are being proactive in preventing any potential untoward outcome. This video clip that I posted on the FB main page may help you in terms of what they will look for during the examination which is by no means completely conclusive, but will go some way to identify your condtion and hopefully give you the diagnosis that you need and need to work with in order to plan your family further. https://www.youtube.com/watch?feature=player_embedded&v=Mgz4waDpC7A What you are seeing in this link is the blood flowing directly through the tumour (coloured) areas. The brighter the colour the heavier/increased blood flow. Ultimately the more blod flow, the heavier and more affected the uterus becomes. My moto is - if in doubt - get a second opinion. In the meantime, keep in touch and come back with an update as to how things are going. All the very best and take care x Danielle x

Kimberly on 30 June 2012 21:49
Hi Danielle, I wanted to thank you for putting this site together it has been very comforting to know I'm not alone in this. I'm a 46 yr old divorced mother of 4 and after years of excessive bleeding and the pain and agony during my periods finally there is an answer. I've been diagnosed with everything from IBS to ulcers but never has anyone until the bleeding became non-stop with the uterus at 16 week gestation has adenomyosis ever been mentioned, this was only after fibroids were ruled out. Even if I were to go into menopause at 50 it would be far too long to have to suffer with the migraines, bloating, bleeding, constant extreme discomfort, nausea, exhaustion that has rendered me lifeless for the last 4 months. I’ve always been a very active hyper person but the last 4 months it’s been non-stop bleeding and the most extreme PMS I’ve ever had and it doesn’t stop. I’m disappointed that doctors want to tell me symptoms don’t seem to match up with what I should be feeling just because my uterus is at 16 weeks I shouldn’t feel such pressure on my bladder, back and stomach. I feel like everything is about to drop out at any second, I can hardly eat and if I do it makes the discomfort unbearable…I’m barely crawling into work daily and crawling home to the bed or couch in tears. No position is comfortable, I cant sit, stand or lay with any relief. My surgery is scheduled August 6th for a partial hysterectomy and while I'm happy there is an end in sight I feel doctors seem so oblivious to the pain and see no urgency in doing something immediately when this has caused such agony and depression in so many women, like the symptoms are all in our head. I’m wondering if I should start calling other doctors and see if their available sooner. I feel like I’m always wondering how I’m going to make it through another day. I just want my life back, NOW!
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Danielle Wright on 02 July 2012 09:44
Hi Kimberley x Sadly I completely recognise your symptoms. I was also was on the receiving end of exactly the same 'suprise' and lack of empathy for the constant pain. I personally feel that often the medical profession are desensitized to woman's actual body shape (since they are not aware of our individual normal healthy shape and often mistake many of us for maybe carrying a little extra weight etc around the tummy area)so effectively don't believe us. For some reason they all seem to know what the text books say in relation to people carrying fat withing the inner cavity of their body around the organs etc, but forget that the inside of a woman's body IS important. In my case, the surgeon that spoke to me after my TAH indicated that my pelvis was very narrow and everything was very tightly packed inside. No kidding! Just before the surgery I ended up eating tiny portions and feeling really faint as my diaphram was completely squashed. Any woman experiencing a monthly cycle feels her womb tilt and move no matter what her size, but with adenomyosis, the movement and changes automatically aggrivate what is already a tender and swollen organ that is constantly bleeding internally. The area is painful for a very good reason. By the time my uterus was the same size as yours - I was in the same situation. Hardly suprising your pain is what you explain, when you consider that the uterus and surrounding tender muscles and ligaments are also pushing and pressing on every nerve in the area, which then upsets the nerves all over your body ( http://www.sympatheticnervoussystem.net/) . I am glad to hear that you have a date in sight, but remember the agony of trying to cope in the meantime. There is of course no harm in contacting the secretary to the surgeon and indicating that you wish to be put on a cancellation list - just in case there is a vacancy prior to your date. If you do this, remember to pack your hospital bag thereafter, since you may receive a call sooner than you think. Reserve your energy for your recovery and please try to keep relaxed. Getting upset in your current condition will only make matters worse as far as you resting and sleeping. I know that this seems probably the worst thing you have experienced right now, and - I agree, in pain terms - it feels like a labour that is grumbling away with nothing to show for it at the end. The surgery WILL take the pain away and WILL be worth the agony right now. Thinking of you and always here to support whenever you need it. In the meantime, try and stay comfortable and keep in touch x Danielle x

Kimberly on 13 August 2012 01:38
Hi Danielle it's Kimberly again 6 days post op from my LAVH...feeling very sore, nauseated and constipated from pain meds...took a trip to the ER friday night for fever of 102 due to anesthesia from the surgery still in my lungs. How long was it for you to start feeling better after your surgery? of course the Drs say with LAVH you should be good to go back to work in two weeks....I hate to tell them but I'm allowed up to 6 weeks accorging to my insurance and no one will rush me back before I'm ready....I'm not one to ever take a sick day but with the way I'm feeling now and all that I suffered through before the surgery, never missing a day I'll do whats best for me...The Dr cant force you to go back in 2 weeks can they?

maria on 20 July 2012 18:33
Really pleased to find your site . I feel my life in the last two years has been so badly and finding this site shows me I am not alone. Came out of hospital yesterday and feel very low
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maria on 20 July 2012 19:03
I have had pain for two years now and have been back and forth to my gp and gynae consultant.Have tried zoladex implant and every pain killer. Had a hysterscopy and biopsy on Wed and had the mirena fitted which he assured me would alleviate symptoms ...No one warned me how painful the mirena would be .My whole life has been affected and I dont think the consultant can see this . I feel so sorry for my very patient husband who has been my rock.

Danielle Wright on 21 July 2012 12:24
Hi Maria x I am terribly sorry to hear how the condition has affected you. It is essential that you keep a diary of your symptoms and return to your consultant to tell him of the pain that you are now in. It is not usual to be able to feel the mirena in fact, you should not actually be aware of it once it is in the correct position. I would advise that you contact the consultant's secretary as soon as you can and tell her about the pain, and arrange to see the consultant as a matter of urgency. If your consultant is unable to see you, please contact your GP for further advice. Keep in touch and take care x Danielle x

Maria on 21 July 2012 21:09
Its now day three of having the coil fitted . My tummy now coming out in large yellow bruises and pain is still bad . Something not right. I feel like I have a huge swelling in my womb and awful dragging sensation and overwhelming urge to push just like as if I was in labour ... Called out of hours gp who keeps saying this is normal . I feel scared that somethings wrong but I am being ignored

Danielle Wright on 05 August 2012 22:39
Hi Maria x Just wondering how you are x please update me either here or directly at info@adenomyosisadviceassociation.org Thank you x Danielle x

Nicole on 22 July 2012 06:00
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, chronic pelvic pain, 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, an 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 feel 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 constant 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.
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Danielle Wright on 22 July 2012 14:57
Hello Nicole x Sadly, as you can imagine, I completely understand where you are right now in terms of your symptoms and your journey with this awful condition. I am very pleased that you have found the website, have FINALLY obtained a diagnosis and that you have surgery scheduled for September. My advice to you at this point is, try and rest as much as you can and prepare for what will be a lengthy recouperation period. The key is to ensure that you follow all instructions in relation to exercises and ensure that you read up on the pages covering what to expect in hospital and recovery and rest. If you have any other queries or need any other support, please do not hesitate to email me directly at info@adenomyosisadviceassociation.org Take good care, and keep in touch x Danielle x

Janet Peak on 03 August 2012 20:22
Have just seen a gynie consultant, with the results of an ultrasound which was thought to show lots of little fibroids and an enlarged and heavy uterus. Had been worried ever since it was uterine cancer. Found the examination horrible, I am 48 have never had children and so am not used to being so manhandled "downthere". He said my womb was high and difficult to get at, I had noticed the difficulty,had to cover my mouth with my hand to stifle sobs. Was quite relieved that there was another explanation for it(Adeno) other than cancer,but will be happy when biopsy done. Had never heard of it. Your site is fab, and now I realise why my life has become so small, I hardly ever go out or socialise now, usually feel too tired,grumpy,achy... the list goes on. Have spent a fortune at the osteopath earlier this year. She said my muscles were so tight they were twisting my pelvis. If I do go out the vicinity of a loo is always a top topic. The list goes on, suffice to say I now know why I am like this, well, will when its confirmed,but it makes so much sense. Will be having, a D&C,hysteroscopy and biopsy. Some how he got me to agree to having a coil fitted whilst I was under the anaesthetic, wish I hadn't agreed to it now.Can I insist on it not happening now I have signed the form? Am worried that they will bide their time to wait for menopause. FSH levels in 2010 suggested I was on that particular journey already. Will the menopause make my enlarged uterus shrink, and will I be able to have sex again without pain if the enlarged uterus is still there? Will I ever get out of smock tops? P.S now I think I know how the cows felt on "All Creatures Great & Small"with the vets hand up it,lol.
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Danielle Wright on 05 August 2012 22:48
Hi Janet, you ARE in control - not the adenomyosis nor the consultant. Sounds as though you need to ask to be referred to someone else and have a conversation about what you REALLY want. You can change your mind and you can certainly refuse ANY type of treatment that you do not wish to have. Menopause stops the flor of estrogen which adenomyosis creates and uses to progress across the uterus etc. I agree, the whole process of examinations can be extremely uncomfortable and can make the patient feel very uneasy - particularly when you are in so much pain. If you are lucky you may not get such severe symptoms and possibly the uterus may shrink - but you really need to be told how far the condition has progressed so that you can make your next decision in terms of controlling the adenomyosis. If hysterectomy is the correct decision for you, you will regain your shape and your body will feel like the old you again and YES you will be able to wear something other than smock tops!!! Keep in touch x Danielle x

lorraine on 11 August 2012 22:44
Hi, I have recently been diagnosed with Adenomyosis. I suffer with all the symptoms that are describe. I am looking for alternative methods to avoid having a hysterectomy. I have come across 3 supplements that apparently will help to balance the hormones. Do you know of any experiences using Natural Progestelle, Dinndolylmethane and Calcium-D-Glucarate. Your advice would be greatly appreciated. Thank you
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Danielle on 12 August 2012 16:46
Hi Lorraine, please see comment below x

Danielle on 12 August 2012 16:45
Hi Lorraine. Bioidentical hormones is very much a hot topic and there is much debate as to whether such a treatment is actually a good idea. It is known that synthetic hormones can only be safely administered for around five years, but thereafter the side effects outweigh the benefits. There are many women for whom any form of hormone - synthetic or bioidentical is actually dangerous, so before considering ANY kind of treatment it would be wise to have a full check up with your general practitioner in order to ensure that the treatment you are interested in is actually safe for you. In the meantime there are some very interesting websites that you may wish to look at to see whether such a treatment would be safe for you. The Livestrong website covers many topics relating to bio-identical hormones and minerals etc which you might like to take a look at: http://www.livestrong.com/bioidentical-hormones/ In the meantime - I will put a request out via the Facebook page to see whether anyone has actually benefited from the substances you have mentioned. Kind regards, Danielle x
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maryanne on 13 August 2012 23:34
I am 33 with no children and I have had fibroids for the last 10 years. Recently the symptoms got worse and I decided to have the UFE procedure done that required a pre-op MRI and thats when the Intervention radiologist after looking at the results of my MRI told me that I have adenomyosis, he explained it could have been a result of a myeomectomy I had 3 years ago to remove the fibroids that later grew back. it was such a relief for me just hearing that there was actually a name for the symptoms I was having which my GYN only attributed to the fibroids, I have been having irregular bleeding, I had to quit excercizing because every time I did I would start bleeding. And the cramps and pelvic pain cannot be explained. The UFE should be able to reduce most of the symptoms according to my Doc but I also want to look into the MRI focused ultrasound which is said to help. But the emotional roller coaster is worse than all this symptoms because no-one seems to get it.
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Danielle on 15 August 2012 18:17
Dear Maryannex thank you for your email. I am sorry to hear that you have been experiencing such problems with your health. Sadly adenomyosis is very a misunderstood condition. That is why I set up the AAA. Please feel free to give details of the website to colleagues, your doctor, surgeon, in fact anyone who may not currently understand what you are going through. It will enable them to learn more about the condition too, and hopefully will make those around you realise how debilitating it really is, and hopefully from there, they may give you some sympathy/empathy and enable you to move forward in terms of your ongoing treatments. If you need anything else, please email me directly again at info@adenomyosisadviceassociation.org. Take care x Danielle x

Danielle Wright on 15 August 2012 18:13
Thank you for your email. I am sorry to hear that you have been experiencing such problems with your health. Sadly adenomyosis is very a misunderstood condition. That is why I set up the AAA. Please feel free to give details of the website to colleagues, your doctor, surgeon, in fact anyone who may not currently understand what you are going through. It will enable them to learn more about the condition too, and hopefully will make them realise how debilitating it really is, and hopefully from there, they may give you some sympathy/empathy and enable you to move forward in terms of your ongoing treatments. If you need anything else, please email me directly again at info@adenomyosisadviceassociation.org. Take care x Danielle x
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Ally on 21 August 2012 16:46
I am so glad to finally find someone who's had to deal and experienced what I'm going through. I am 37 years old. I've suffered from heavy, painful menstrual periods since I was a teenager...all that I was ever given where birth control pills. I was diagnosed with cervical cancer 2 years ago. I was advised by the doctor to have a hysterectomy , which would have been ideal but the fact that I didn't have any children made it too final. After my 2nd surgery to remove cancerous cells from my cervix I continued to bleed I contacted the oncologist who performed the surgery who then told me to see the gyn who then told me to see a fertility doctor....I was soo confused and being shoved around from doctor to doctor. The fertility doctor was the first one to diagnose me with adenomyosis. I was then sent back to my gyn w/the results and was given birth control pills. Which only worked for about a month. It seemed like none of these doctors wanted to look for another solution and just suggested I had the hysterectomy. I finally found a doctor who wasn't too familiar with the disease, but was willing to try different alternatives. I'm now on Lupron, it worked for the 1st month on the 2nd month I started spotting and bleeding a bit...I am now on my 3r shot and it's not working, I'm bleeding heavy and continue to have pain. I've lived the last year 1/2 of my life...not doing much, not going out as much. Not sleeping, worried that I'm not bleeding through my clothes. It's just been unbearable. My questions is, is there anyone who's had this and has been able to conceive? Am I wasting my time with alternatives? Should I just have the surgery and get it over with?
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Danielle on 26 August 2012 17:31
Hello Ally. I am very sorry that you are suffering so much with the adenomyosis right now. In answer to your quesion, yes many women do become pregnant even with the condition which often calms down with the overflow of other hormones. There IS the risk of miscarriage with the condition since the embryo may become attached to an area where the condition has already damaged the surface of the womb wall. I would suggest at this point in time asking for a second opinion from another qualified gynae specialist who has dealt with adenomyosis before. You can ask your GP to investigate for you and find someone suitable. Hysterectomy is obviously not an easy decision for ANY woman. It is something that you need to think about very carefully and may not suit everyone physically or emotionally. In your situation, more information is key to enable you to weigh up the pro's and con's. If there is anything else you need assitance with, please email or message again x Kind regards, Danielle x

Barbara on 05 September 2012 02:01
Hi. I recently had a myomectomy (laporoscopic) about two years ago. The doctor found that one of my tumors was an adenomyoma. I was receommended to have children ASAP. I am 32 years old and fear I have several more years until I am ready to have a child. Am I pushing my luck with? I really dont understand adenomyoma, most doctors dont. I know that the odds that my fibroid can grow back is great, but now on top of that, I have this adenomyosis condition that no one seems to understand. Do you think I can wait a few years, or do you think that I should start trying to have kids sooner than later. I am single and would like to wait, but I am a bit nervous. I would regret waiting until I cannot have kids.
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Danielle Wright on 05 September 2012 18:40
Hello Barbara. I am very sorry to hear that you have adenomyosis. In answer to your question, yes women are still able to conceive with the condition, but it is harder, and often when the embryo attaches to the adeno area because of the constant haemorraging the pregnancy fails. If pregnancy happens the massive influx of hormones temporarily halts the condition (so you will feel better generally!) In my opinion and experience, there is nothing that you can do to change the progress of the condition, although you will find iron replacement and calcium will help a lot, but the condition does spread and damage the surface and muscle of the womb and cervix. Surgery is something you should only consider if EVERYTHING else has failed, and you are still at an age where pregnancy is possible x I hope that helps a little to dispell any myths. Should you need any more answers, please let me know. Take care x Danielle

Jann on 08 September 2012 11:25
Jann on 07 September 2012 - I am 55 years old diagnosed with adenomyosis as well as two adenomyomas in the wall of my uterus in January this year. At first I was having menstrual pain with heavy clotting but with the help of a naturopath this has eased up. My naturopath put me on herbal medicine of Shatavari, dong quai, shephards purse, calendula, thuja, poke root & ginger as well as Innovative Meta 1-3-C (hormone balancer) and a liver cleansing tablet. Also I have stopped eating red meat, eating only free range chicken & eggs, fish, fruit & vegetables, no wheat/gluten products or anything containing soy.I recently had an ultrasound and the size of my uterus has reduced in size by 0.3cm and one of the adenomyomas has reduced in size from 3.9 to 2.7cms. I have started applying wintergreen oil with castor oil in the morning and cypress, lavender and castor oil at night to the area. In early July I started using progesterone cream about a small 1/4 teaspoon twice a day. Stopping on the first day of my cycle and recommending again on the 8th day. An earlier blood test this year revealed I am a long way off menopause and I don’t have any signs to indicate I am close. I was wondering by using progesterone cream whether that will bring on menopause like the mirena as it has progesterone in it too? I was thinking of having a saliva test done to see how far menopause was away. Do you think this is a good idea and they are accurate? Can this condition spread to other parts of my body? If I decided to have a partial hysterectomy (keeping my cervix & ovaries) are there problems later in life, at present I have a cyst on my right ovary? I can manage this condition at the moment if I eat small meals but the heavy feeling in my stomach is horrible some days. I am not sure I can wait 2 years feeling like I do in the stomach.
Reply to comment
Danielle Wright on 08 September 2012 22:06
Hi Jann, firstly I am glad you are working hard to try to control your symptoms x If it makes the way forward for you easier, it would be sensible to take any test you can to measure hormones and/or menopause etc. There are also urine tests you can also do that show the levels of hormones, but in all honesty the only sort of tests that you will be able to rely on for those hormone levels will be done by a qualified clinician under controlled conditions. Creams are not a precise science, and since everyone has different body mass and fat levels, hormones carried in creams will naturally distribute in different ways, but I doubt very much that the strength of hormones in the creams would have much of an impact on the speed that you experience menopause since this is controlled via the pituitary gland and your ovaries. Yes adenomyosis can be found in other parts of the body namely major organs. Any qualified clinician will be able to refer you for tests if they are concerned that you may have the condition in another organ. The current thought process is to keep ovaries if you are of an age where a medically induced menopause is too soon - although you are nearing the age where this would naturally occur x Cysts on the ovaries are common and even if you were to have a cyst and had already had a hysterectomy, this would present few problems since any material released from the ovaries would be simply absorbed internally and would not cause any problems. The time factor is the thing that you have to decide for yourself. If you can hold on without surgery just until menopause, you would fit into the category of women who once menopause had arrived, would find that the adenomyosis areas would slowly become inactive anyway, and you would naturally experience a cessation of the symptoms as the hormones slowly decreased. I hope that helps answer a few of your questions. In the meantime, please feel free to keep in touch x Kind regards, Danielle x

ali on 19 September 2012 08:02
Hi Danielle, Thanks for your site, and to all those who have posted their stories. It certainly helps to read what others have gone through to get this in perspective. Also I have read some other symptoms that are not reported so much elsewhere. Im nearly 49 and have been struggling with similar symptoms for 2 years. After having regular periods, 2 children by caesarean, suddenly the periods became erratic, then continuous, heavy with large clots. The last one lasted nearly 12 weeks with a 5 day break. Other symptoms were like I had IBS, bloating, flatulence, either constipated or diahorrea. But this I attributed to the iron tablets I was taking for the anemia. I didnt have that much pain to start but now it is constant.Mainly in my lower stomach and back and I have pain in my legs and under my arms. After being put on 2 different types of pill, I had an ultrasound and was told I had adenomyosis and referred to a gyn. He confirmed this with an internal examination. As I am close to menopause he suggested the mirena, but I really want my life back, Im moody, tired, sore and when bleeding, uncomfortable. I have been booked in for a TLH in two weeks time. I will let you know how it goes.
Reply to comment
Danielle Wright on 21 September 2012 18:54
Dear Ali, thank you so much for your email and feedback about the website. I am pleased to hear that you are on track with your treatment and please do keep in touch and let us know how things go x

Jeannette R on 22 September 2012 14:46
Hello, I just wanted to say thank you for all the information on your site. I did not know I had adenomyosis until after my hysterectomy and the pathology report was back. I have had periods like this ever since I was a teen and started periods. I am now a 39 yr old woman with 6 children. My periods were getting worse over the years and my gyno was great in keeping up with my problems. I finally told him it was so bad that I could not function normally and he started the tests required for the insurance co to approve the hysterectomy. I just had my surgery last week and am recouping at home. I just wish that I had found this information sooner it would have explained so much to me. Thank you again for this site and all the information. I look forward to a pain free life now that I have taken care of my problem.
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Danielle Wright on 26 September 2012 15:15
Hello Jannette. Thank you for your feedback and I am very sorry to hear that you had suffered for so many years. On the plus side, you are now on the road to recovery and need to rest well. If there is anything that I can do to support you ongoing, please let me know. Take care, Danielle x

Syrius on 06 October 2012 15:45
Hello..I turned 41 on the 1st of Oct...was diagnosed with adenomyosis the next day. This has been very frustrating and embarrassing for me as my pain is unbearable and when my cycle arrives, I lose so much blood that I get severely light-headed, once while driving I was so light-headed that I had to pull over and call an ambulance...sometimes bleeding so heavily that even with the use of a super-plus tampon and a pad..I still end up soiling my clothes! I have two beautiful children so I am going to have a hysterectomy, hopefully soon. It helps to have a place to come where other's understand the depth of this dreadful disease. Thanks ladies. I no longer feel alone
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Danielle Wright on 18 October 2012 21:34
Hi Syrius, very glad that you have found the website helpful. If there is anything that you need support with ongoing in the future, please email again. Take care x Danielle x

Barbara on 04 November 2012 11:01
Hi,I was wondering whether anyone might be able to give me some advise or point me in the right direction. I am 41 and having children has never happened for me. I have stage 4/5 endometriosis and had numerous sugeries. On a recent consult with my gyneo surgeon he has now diagnosed me with Adenomyosis which I had never heard of before. I have been given 2 options, first laprascopic sugery to remove the endo and replace my Mirena IUD and the second option is to have a laprascopic hysterectomy. I believe the second option is the way to go but I am really struggling with the pyschological side of having a hysterectomy and not having children it just seems so final. I am sure that there are some of you out there who can relate to this, so if anyone can help me I would really appreciate it. Thanks in advance.
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Danielle Wright on 05 November 2012 22:43
Hi Barbara, you may wish to visit the following site if you have not already x http://www.hystersisters.com/ It is very good and will help you cover some of the subjects that you are dealing with right now x It is a far from easy decision for any woman to take x Trust me, I do understand x Danielle x

Tricia on 08 December 2012 15:51
Hi, I'm so happy and relieved to have found this site. Its great to hear other stories. I was diagnosed with adenomyosis just a week ago. I'm 35 and have two gorgeous young boys, 3 and 7. I have had heavy and very painful periods all my life that were made worse by both pregnancies. Then my period disappeared for 6 months. When it came back it was brutal. with a couple weeks off here and there I've been bleeding for 4 months. I'm anemic at this point and on iron pills 3x a day. To realize that the headaches, bloating, tummy troubles were all related to adenomyosis was both a relief and shocking. This disease is far reaching and leaves no part of your life untouched sadly. I have an appt with my obgyn Jan 4th to further discuss treatment, though my adenomyosis is sever so likely hysterectomy will be decided treatment. I also suffered a miscarriage very sadly a month ago, likely due to this diseases. I'm frustrated with how little I can because of this condition. I am also very nervous for the surgery. Is it similar recovery and pain wise to a C section? I'm afraid, as most are, of the unknown and I've had 2 C sections so I'm hoping its similar to that. Any ideas or thoughts? Thanks so much for this site---its so informative and helpful and very much appreciated! Tricia
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Danielle Wright on 10 December 2012 20:43
Dear Tricia. Thank you for your email and I was sorry to hear of your miscarriage x I completely understand your apprehension in relation to the hysterctomy, it is no easy decision for any woman, but if you are in so much constant acute pain there really is no other option. I only had one natural birth, so have never experienced a C section, however, as far as pain goes generally, for me having a very high pain threshold normally and having an allergy to morphine I coped with dear old paracetamol which I took for two days. The stapled scar did't hurt either, and the surface healed completely within 6 weeks. After about 6 months the scar stopped smarting and I do not even notice it now. The thing that suprised me the most was the exhaustion. I knew I would be tired, but in my adenomyosis free days having previously enjoyed a 10 mile walk and felt energised afterwards, by comparison I felt like I had walked a marathon. The anesthetic has a lot to do with these initial feelings I know, and there is very little that you can do about this since it is a basic requirement of the surgery. It is really important to drink plenty of water to flush the medication out of your body. If this sounds like a C-section then - you will already have the correct advice about how to care for your scar and how to move out of the bed in the correct way etc x Keep in touch x Danielle x

Christine on 28 December 2012 03:40
Thanks for this great site. 2wks ago I went to have an endo ablation and esurre. Both procedures were unable to be done due to an enlarged uterus not allowing the ablation equipment to work and fibroids blocking the tubes keeping the Dr from being able to do the esurre. She did do an unplanned D&C in hopes of giving me some relief for a few months. Dr also said I have adenomyosis. Of course I had never heard of it prior to this. I have very heavy periods and bad cramps. I suppose I have the other symptoms too but I have always just assumed the bladder issues were due to 3 pregnancies and c-sections and the exhaustion to our busy life with 3 kids. I get very bloated from the time I ovulate until my period starts. I also tend to put on 2-4lbs during this time. I am curious to know how enlarged my uterus actually is and will be first question to my Dr tomorrow at my follow up appt. I have pains in my legs when I try to sleep on my side but as long as I lay on my back it's fine. No clue if this is related or not. I don't feel as though the symptoms I have are severe enough for a hysterectomy yet but I am concerned if I leave it go it will get worse and cause me more issues. I am 38 yrs old. Is there a concern with letting it go longer? Do the symptoms typically gradually get worse or can they change suddenly?
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Danielle Wright on 28 December 2012 23:14
Hi Christine x You will get a good estimate in terms of the size of your uterus from a scan, but it is only after hysterectomy that you will actually have a before and after weight to compare (I was 9lbs lighter immediately). The pains you describe are in line with what other women with adenomyosis experience. So long as you can get into a comfortable-ish position to ensure you do get some level of rest - that is the main thing. The difference in symptoms will be far greater as the condition develops. Most important;y, keep a check on your iron store levels and make sure you are not becoming anemic. Your General Practitioner should be testing you for these from now on on a regular basis to ensure that you manage your symptoms. At 38 it is common for the symptoms to get worse before they improve. If your symptoms were occuring at say 50, it would be highly likely that you would reach menopause and the hormones would be becoming weaker. Since you are younger, the likelyhood of you starting your menopause is less, unless of course there is a family history of menopause at a young age or other factors such as recently receiving cancer treatment etc xx The symptoms can suddenly worsen if for example an adenomyosis 'tumour' grows next to a vein or artery which would give it access to fresh blood, which at your period would bleed more and therefore clot more. This would increase blood loss and increase the likelyhood of anemia etc x If you have the chance, ask to see an MRI scan image of your uterus, or if you are really lucky - take a look at the scan as it happens to see the extent of the condition x I hope that helps a little x Keep in touch x Danielle x
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Carrie on 16 January 2013 19:09
Love this website! I am 35-years-old, extremely active and have one child. Here is my story: After two years of MRI, blood tests, ultra sounds, nerve conduction test, EMG, Cat Scan. With symptoms of miscarriages, unable to conceive, headaches, 5 day migraines, fatigue, tingly feet and hands, muscle cramps, stabbing pains from tightly cramped muscles that spread to arms and face, light-headed, lots of "flu like" days. These symptoms were not all at once they just slowly came on, adding each symptom to the list. I began to really worry. I just felt terrible. During this time I was diagnosed with hypothyroidism, food/pollen allergies and B12 deficiency. What in the world was going on with my body! Doctors were driving me crazy, I just wanted my life back. Finally when the neurologist said, "I can't find anything wrong and you won't take pain or anxiety pills" She goffed at the idea of endometriosis stating that, "Only if there were pockets of it." At this point, I knew I had to figure this out on my own. I began to notice that after my irregular cycle was over I would have a good week (which eventually turned to just a few short days). Went to my GP and she tried to put me on birth control thinking that endo was pressing on the bundle of nerves. Birth control makes me emotionally crazy! So, despite my GP recommendation that I do not seek laporoscopy, I found a gyno surgeon, pleaded my case for laporoscopy, which he even questioned a diagnosis of endometriosis. Mostly that is my fault I thought terrible cramping from ovulation to end of cycle was normal,cycle anywhere from 22-35 days, and huge blood clots during cycle. I never complained about my woman issues because it had been that way since I started at age 17. After a trip to the ER at 19, I thought something blew up inside of me it hurt so bad, the rude male nurse gave me a pain pill and said it was "just a bad period". I have talked to several friends and family and their periods were just like mine. (I want to roll my eyes now, if just one mentioned that it wasn't normal, maybe I could have had a second child that we so desperately wanted) December 19th 2012 laparoscopy surgery. The gyno surgeon found and removed the endometriosis, spider veins on my fallopian tubes with congestion, uterus the size of a grapefruit, boggy, inflammed, and diagnosed adenomyosis. YEAH! I am not crazy! Everyday since the surgery I feel better! Little nervous about my first cycle. I got so tired of hearing fibromyalgia. I kept saying that's not it! I followed up with GP to discuss a hysterectomy and she actually told me, "I saw the report and I don't know why you felt so bad, I have patients with worse endo than you." 1. I got a copy of the same report and no where did it say how much endo was there. Also, now I know the other big part of my problem was the adenomyosis and inflammation. (Which my GP kept mispronouncing it as adenomyCOsis) 2. How does she know how much endo other patients have without laporoscopy? 3. I don't enjoy spending the bulk of my time and money going to the doctor! Sorry, still a little bitter about being pushed off and spending two misearble years being told nothing is wrong, when I was miserable. I still have slight thigh and calf cramps that lead to painful little knots. Headaches that I can now control. But, most importantly the stabbing pains in legs, arms, face, chest, neck are completely gone as long with everything else, especially the tiredness. Do I have an answer as to why it got so bad, no. Do I still have to fight the Gyno for a hysterectomy and convince him it is not fibromyalgia nor is it in my head, YES! My GP said I should wait a few months before I decide to have a hysterectomy to see if I can "live this way". Boy, they sure know how to make you feel like a drama queen! Which I am not...LOL I know the stories on here really helped me. I wanted to return the favor to someone too. Thank you everyone!
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Hayley on 17 January 2013 02:17
I was diagnosed with adenkImyosis 3years ago. I was lucky I was sent to city hospital Nottingham they are a teaching facility so very up to date. With my problem.. It has destroyed my life I don't have any bleeding just pain. .people have and still do think I'm making it up because I drink.....,heavily I drink to keep going my husband works away I have 2 boys I sleep as much as I can.. Tings have now got worse in the fact I am not clotting. Can feel uterus filling up. Going in for a biopsy. But it's laughable why didn't they do it 3 years ago still maybe we,ll hit gold. Knowing my luck they will miss it! Still need affirmative confirmation then have to go on hrt to so if its my ovaries! Then they can decide what to take out. In the meantime I just have to cope and I hate to. Say it but I use alcohol. Could do with some friendly non judgmental advice.just beaCause you don't bleed doesn't mean your not in pain
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Danielle Wright on 17 January 2013 23:07
Dear Hayley, adenomyosis often gives symptoms of pain and the bleeding goes into the walls of the uterus leading to a distended stomach and very much pain. You have done a very brave thing to open up and talk about using alcohol to deal with the condition. Alcohol dehydrates the body, but it also thins the bloood which will mean that you will haemorrage more within the uterus. This will lead to your uterus becoming far larger. You will need to get support and help with this. Also if you are offered some treatments, the alcohol will interfere with the medication. There are many organisations that can help for free like http://www.aquarius.org.uk/contactus and this link has more information that you may wish to take a look at to help you http://www.supportline.org.uk/problems/alcohol.php At the end of the day, you really do need to get more support from your doctor and if this has not been forthcoming, think about maybe seeing another doctor at the practice that you attend or by changing to another x With adenomyosis you need all the support you can get and the sooner the better so that you can get back to living a pain free life again xx

Trina on 18 January 2013 02:00
Hello. Today I was diagnosed with adenomyosis. I believe this to be a diagnoses long in the waiting. I have recently moved to a new state so I have a new doctor. In the past I had been told that I have many fibroids that were the cause of my extremely heavy bleeding and anemia and was offered oblation or hysterectomy, which I declined. I believe the adenomyosis diagnoses I received today sounds more accurate considering all the other symptoms I have that are related to the condition . I do not want to have anymore children as I am 52 yrs old. I have been offered an IUD or hysterectomy for the adenomyosis, but am not sure which I should do. I was wondering if a Subtotal Hysterectomy (leaving my ovaries, cervix and fallopian tubes) is an successful form of treatment for adenomyosis or if it is best to get a Total or Complete hysterectomy? My thoughts are that if I am able to leave my ovaries then I may not experience the hormonal problems associated with hysterectomy but I'm not sure if that is correct or not. Please advise. Thank you!
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Danielle Wright on 20 January 2013 16:52
Dear Trina, hysterectomy no matter which option is a radically invasive type of surgery. Often women speak of their bodies going into a 'shock' and thereafter a mini break in the supply of hormones from the ovaries that have indeed been left in place. This is pretty much down to circulation within the pelvic area. In time, if all heals well, the flow of hormones will come back. This contrasts dramatically with the removal of the ovaries at which point there will be no supply of natural hormones. This is why many gynae specialists offer women HRT. There are time limits with this method of replacement though, usually around five years due to the contraindications - heart disease, bone density loss etc. The hysterectomy you will have will depend upon the extent of the adenomyosis, whether there is a history or ovarian, womb and cervical cancer. If there is no family history of such issues you may prefer to keep the ovaries and other organs and simply have the uterus removed. Since you have some years until menopause is likely you may want to establish how far your case of adenomyosis has progressed. If it is not so advanced you may be one of the lucky women that does not have an agressive form of the condition. Since adenomyosis feeds on and the 'tumours' produce estrogen, the menopause brings about a rapid decline of the hormone so the areas do not actually increase or continue to grow. The tissue will remain there and needs to be monitored regularly and smear tests must be carried out when requested as there is a very real risk of womb cancer thereafter x Danielle x

Trina on 18 January 2013 02:12
BTW, I come from a family of women that don't experience menopause until in their early 60's so that is why I need to do something ASAP :) Thanks!
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Danielle Wright on 20 January 2013 16:54
Please refer to the answer above x Many thanks x

Trina on 18 January 2013 02:30
Dear Danielle, I just saw in one of your post where you said "If you can hold on without surgery just until menopause, you would fit into the category of women who once menopause had arrived, would find that the adenomyosis areas would slowly become inactive anyway, and you would naturally experience a cessation of the symptoms as the hormones slowly decreased". Does this also mean that the abnormal tissue growth would go away eventually on it's own? Thanks!
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Danielle Wright on 20 January 2013 16:54
Please refer to the answer above x Many thanks x

Teresa M. Reed on 27 January 2013 16:54
I just have a question: does ablation take away the pain of adenomyosis. I will not have a hysterectomy and being on the pill helped, but can't be on the pill any more. I am 49. If ablation just took away the heavy bleeding, it would be worth getting rid of one problem. What is your opinion. Any ideas? Suggestions?
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Danielle Wright on 28 January 2013 14:16
Hi Teresa, thank you for your question. Many women have reported to me that although they have had an abalation, they appear not to have experienced a major improvement in pain. It appears to help with initial bleeding,however does not reach in depth into the walls of the uterus, so, if you have extensive adenomyosis it may not help all that much in terms of ongoing pain and swelling and the risk of anemia etc. The key with this is to see how advanced your condition is, and take a view thereafter. I suggest going back to your gynae consultant and getting an honest opinion from them in relation to the condition of your uterus. Keep in touch x Danielle x

Katie on 31 January 2013 18:29
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.
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Danielle Wright on 04 February 2013 11:08
Dear Katie,uterine embolization is often offered to women as a possible treatment for adenomyosis. The success of this depends upon the individual case and the extent of the condition. You need to know how severe your condition is and you also need to see for yourself what your uterus looks like from the scans and the position of the main arteries and blood vessels around the adenomyosis 'tumours'. If necessary you might wish to seek another opinion. There is no harm in this and you could do this whilst waiting for the date for your surgery to come up. Cancellations occur very often and if you choose not to have the surgery, your appointment will be offered to someone else x Danielle x

Tamsin on 11 February 2013 10:56
Hello. Firstly, thank you so much for creating this website, it's so nice to see i'm not alone and not going mad! I've been battling with bad periods since what feels like forever, and started when I was 11. I am now 27, and the last 5 years or so have been terrible. I'm incredidibly moody, crying over the smallest things or flying off the handle in temper over nothing at all, which is making my relationship with my boyfriend, and also being in charge of a lot of people at work very difficult! I have huge clots, bleed for about 2 weeks at a time, and the pain is unbearable. Anyway, after a laparoscopy a few months ago, i went for a check up yesterday, wand was told i have adenomyosis. This is after countless visits to doctors, being put on every pill going, having the implant and also the depot. I have been on some sort of pill since 14 years of age, and have always been ok for about 2 months before my body seems to reject it. My hair falls out, i get out of breath quickly (i'm a normal size 12 and excersze regularly and eat well), and am fed up of feeling like this. I also get severely constipated, and my gas is so bad it makes my eyes water :-( So basically, i don't know what to do know. I have had a coil fitted, and my gyno said to put me on cerazete pill for a few months. The coil has been in for 2 months, and nothing really has changed. I haven't got any children, and don't want any right now, but I know I will in a few years. I don't even know why i'm posting this, as I know no one has a magic answer, i just needed to vent! and show my appreciatetion for this website! Thank you xxxxx
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Danielle Wright on 11 February 2013 11:20
Hi Tamsin x Thank you for your message x The frustrations you feel are completely normal with this condition particularly since most people still have not heard of this condition. For you right now, it would be a good idea to get an accurate picture of how advanced your condition is. Is it at a stage which can be controlled easily or is it beyond control and requires surgery - both of which the gynae surgeon will be able to discuss with you. In the meantime, you will find managing the symptoms will be easier since now you know what is causing them. Look for an estrogen free diet: http://www.livestrong.com/article/234882-anti-estrogenic-diet/ increase your protein a good 10 days before you are set to start your period and ensure that you cut out any stimulants like alcohol, tea, coffee etc. This way you will give your body a chance to deal with what is happening. Also, get tested for your iron store levels. Are they low or on their way to low? If so your doctor will be able to help with iron replacement which will help some more x You are not alone and I am very glad you have found the Adenomyosis Advice Association x Take care, Danielle x

Danielle Wright on 11 February 2013 11:16
Hi Tamsin x Thank you for your message x The frustrations you feel are completely normal with this condition particularly since most people still have not heard of this condition. For you right now, it would be a good idea to get an accurate picture of how advanced your condition is. Is it at a stage which can be controlled easily or is it beyond control and requires surgery - both of which the gynae surgeon will be able to discuss with you. In the meantime, you will find managing the symptoms will be easier since now you know what is causing them. Look for an estrogen free diet: http://www.livestrong.com/article/234882-anti-estrogenic-diet/ increase your protein a good 10 days before you are set to start your period and ensure that you cut out any stimulants like alcohol, tea, coffee etc. This way you will give your body a chance to deal with what is happening. Also, get tested for your iron store levels. Are they low or on their way to low? If so your doctor will be able to help with iron replacement which will help some more x You are not alone and I am very glad you have found the Adenomyosis Advice Association x Take care, Danielle x
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Tamsin on 11 February 2013 21:06
Hiya. Thanks fo rmuch for replying so quickly xx I have low iron levels and take iron supplements as well as eat plenty of iron rich foods, but this explains why I am tired all the time. It's such a horrible feeling. My gyno said is there is no improvement over the next few months, then she was on about putting me on treatment simnilar to what women that are going through the menopause are on, but I can't remember what it was called. I think just that word scares me to be honest! I drink decaf tea, and hardly touch alcohol. I'm quite good really, think i'm scared anything bad will make it hurt more! lol. It's so nice to know that what I have, and how I feel, is actually a real thing, I guess it's just now about handling it. And reading all the other posts, it sounds like i'm lucky to have had a diagnosis early! xxx

sarah on 16 February 2013 21:01
hello!think this is a brilliant site..i have been suffering with painful periods, & most of the symptoms,for since 2004. I have been back & forth to the doctors, gyny, with no sucsess of dianogis,..my pain has got so bad that today my daughter phoned for ambulance this morn as i was screaming with pain couldnt move my leg, & again they were called in afternoon after suffering my most servere pain..i was shaking couldnt move without pain..the pain is always on right hand side of my groin..but afetr everything theres nothing they will do for me..its like noone listen..they said go to yr gp to have a refer to gyny..i did this in oct last year but still not had an appointment..i went to see the doc after being out for a meal with family & had the pain..i looked like i was in labour..very frightning for my partner & children..im going back to docs on mon & im really hoping something will get sorted as i cannnot cope with this anymore :(
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Danielle Wright on 19 February 2013 19:45
Dear Sarah, I am sorry to hear that your symptoms are so severe. You need to be referred urgently to your gynae specialist. Please do let me know how you got on and what the GP suggested x Danielle x

Crystal on 28 February 2013 05:55
Hello, I love this website. After about 3 years of heavy bleeding for months on end at times, my Gyno finally diagnosed me with Adenomyosis about a month ago. I had never even heard of it. I am 30 years old and am not planning on having kids. When my DR Diagnosed me she prescribed me a stronger birth control pill and told me that it should help and for the most part it does until It is time for me to start my period. Which the pain that I'm going through right now (shooting abdomen pain, shooting pains in legs, anemia, heaving bleeding, and missing work) I am just about ready to have a hysterectomy, I was actually ready to have one before she gave me my diagnosed. Do you guys think that I am jumping the gun here. I just don't want to live with this type of pain for the rest of my life.
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Danielle on 28 February 2013 09:29
Dear Crystal, you ask a very important question here x You know how much your condition is affecting your quality of life and at some point from the sounds of things it looks as though hysterectomy will probably be the decision that you go for considering your current symptoms. The thorny question is will your views change in due course regarding having a baby. It is for this reason that many gynae specialists often try and hold off from suggesting/performing hysterectomy. I think the important thing for you right now is to consider whether you would like to possibly have children in the future, and discuss with a fertility specialist freezing eggs just in case. These of course can be harvested at any time whether your uterus is there or not, although hysterectomy does and can affect ovary function temporarily/permanently - so it would be wise to think well ahead x I hope that helps a little, in the meantime, keep in touch x Danielle x

Nina on 04 March 2013 18:09
Hi My gyno suspects adenomosis following a scan & I am booked in for a laparoscopy, hysteroscopy & biopsy next Tues. She is very keen to fit the Mirena coil at this time & told me to go away & think about. The next time I will see her is the morning of these procedures. I am very confused & unsure what to do. Researching the coil throws up all kinds of horror stories. I don't know whether I should wait for my results before I decide or go ahead as it would be easier to fit at the same time. Do you have any advice? Does the coil stop the severe pain or is it only stoppping heavy perods?
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Danielle on 04 March 2013 19:34
Hi Nina, I guess the main thing to consider with the coil is whether you are sensitive to copper/silver/hormone depending on the type offered. Some women cannot tollerate hormones if there is a family history of deep veil thrombosis etc. Also you need to be aware of how far your adenomyosis has progressed. If it is late stage and there is little room left within the uterus it may be painful. Women with mild symptoms of adenomyosis report that it helps ease off the progression of the condition. Coils however do increase blood flow generally, so this is perhaps something else that you may wish to consider. If it were me, I would wait for the results, and at that point ask to see images of your uterus either of the scans that have already been taken or of your next scan. Keep in touch x Danielle x

Sara on 04 March 2013 21:25
Hello, I have just recently been diagnosed with adenomyosis. I went in two weeks ago for an ultrasound due to pelvic pain, heavy bleeding and cramping. The doctor had told me that my lining was very thick and that it could be uterine cancer. I had a biopsy that luckily turned out to be normal. The doctor has suggested that I get a hysterectomy as it is the best solution to resolve the pain. He has mentioned also removing my ovaries as well as I am high risk for ovarian cancer. I am only 35 years old and have three children, I do not plan on having anymore, but I am nervous about such a big change of life with a hysterectomy. I just want to say thank you for having such a wonderful site full of information and support. It is so nice to know that there is others that have gone through and are going through the same thing.
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Danielle on 06 March 2013 00:05
Dear Sara, thank you for your message and I am very sorry that you have had to go through what you have to date. At least you have a diagnosis now for adenomyosis and that it is not cancer x I am glad that you have discovered the website and feel free to email any time for support or help. Kind regards, Danielle x

Catherine on 05 March 2013 20:34
Hello, After my 4th ultrasound the diagnosis has gone from uterine fibroids to one of adenomyosis. I have suffered with painful, heavy, twice a month periods since I was in my late teens. I am going to be referred to a specialist to discuss treatment options. My cousin found this site and recommended it to me and I am so glad she did!
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Danielle on 06 March 2013 00:09
Dear Catherine, I am very sorry to hear that you have adenomyosis but I am pleased your cousin let you know about the site x The Facebook page also has lots of information so please feel free to scroll all the way down to the beginning of the page to make use of all the information to help you on your journey x If you need any assistance, please email at any time x Danielle x

Karen on 08 March 2013 07:49
Thank you so much for taking the time to create this site. It helps everyone to know that others are suffering with the same symptoms. My story: I started with endo when I was only 19. Over the course of 10 yrs I had 3 laps which cleared up the condition. I had my first child at 30 yrs of age after they cleared my tubes. My daughter was born 5 yrs later. I felt the best ever while I was pregnant. Fast forward 11 yrs and the pain and cramps slowly returned. Up until this point my periods were ok, it was the constant cramping and pain 3 weeks out of the month that was bad. When the bleeding became bad, the gyn did an eblasion. Something went wrong and he had to stop the procedure. Last summer the gyn did another lap suspecting endo had come back. Hardly any endo was there, but it made him suspect adenomyosis. He recommended I try Lupron. Hoping that suppressing my hormones would elevate the symptoms. I did a 3 month injection. I am happy to report that it worked. I did have some menopausal symptoms, but they got better over time. The constant pain was gone. I did Lupron for a year and decided to give my body a break. It took 6 months from the last shot for my period to come back. And come back it did! Each month the pain is worse and the bleeding is so bad I have to lay flat at least 2 days of the month. At 48 1/2, I was hoping menopause would be hitting soon. But no such luck. I have a meeting with the gyn tomorrow to discuss a hysterectomy. He wants to leave my ovaries. I need to find out if he will leave my cervix. I am scared of the surgery, but know that I can't function like this anymore. I got a lupron shot last week to buy me some time and the cramps/pain still have not gone away. Based on what I have read here, I will be able to get my life back after the surgery. I sure hope so. I am much to active to lay around all the time. ps. it's nice to know that the tiredness is a common symptom. I had no idea what was going on with that! Up all night and tired all day. thank you for listening. I will keep you updated. Karen.
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Danielle on 09 March 2013 22:14
Dear Karen,thank you for your message and feedback x Your email details symptoms and experiences that are very common with adenomyosis and that many women will be able to relate to. Wishing you well with your appointment, and please do keep in touch x Danielle x

Trish on 11 March 2013 07:52
I am very happy to share that I am having a partial hysterectomy in 18 more days! Here's my story.... In early September, I told my husband I'd noticed the past 3 periods were a little longer & heavier than usual... plus I had more cramps than usual. My annual was in January, but I'd decided that if I had one more month like that... I'd go in early. One day the end of Sept/early October 2012, I had pain which progressed throughout the day and I thought I had a bladder infection - I was crampy and had to go to the bathroom A LOT that day! I went to the walk in that night, send for an ultrasound (I drove over an hour instead of 10 mins I'd normally drive to get the earliest appt the following Monday!) I ended up at my OBGYN's office to talk to him about my diagnosis of adenomyosis... I'm 32 and done having children, so hysterectomy is my personal best option. I scheduled my surgery for Thursday after Thanksgiving, only to go in for my pre-op to be told my insurance DENIED my surgery. They wanted me to take 3 months of hormones, then biopsy, then ablation... I was crying so hard... the pain had only gotten worse. I REFUSED to take hormones and told my doc I'd wait. Our insurance changed in January... they approved it! I've had nearly every symptom listed on this website. From the headaches to sharp, stabbing pains, "feel like I'm in labor" pains... to heavier and longer periods, to feeling like my uterus is going to "fall out," to having to pee all the time, and the pain has only gotten worse since my heavier periods started back in about June or July. I'm tired of being tired all the time and not being able to let my 4 year old son sit in my lap when he wants. I am tired of taking pain medicine most days out of the month, even if only an anti-inflammatory... Lately I'm taking a pain medicine at night to help me be comfortable and help me sleep. At the time of my diagnosis, I was told my uterus is about the size of being 10 weeks pregnant.... I wonder how much it may have progressed during this time? I swear my stomach area feels bigger now. I am such a happy girl knowing how close I am to being out of pain! I appreciate that I found this website not long after I was diagnosed. It has helped me greatly know I'm not crazy (seriously thought I was losing my mind when I didn't have a diagnosis at first!).... Thank you for sharing all of this information. Trish
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Danielle on 12 March 2013 17:01
Dear Trish, thank you for your message x I am very pleased to hear that you have a date scheduled x Please email me should you need any support leading up to or after your surgery x Take care x Danielle x

Christina on 20 March 2013 23:47
Hi Danielle, thank you so much for the wonderful website... I have been battling, severe lower back pain for the last 3 years, as well I have been having major problems with migraines, I am on a waiting list and have been for months to see a migraine doctor, have had a CT and MRI of my head, lower and upper back....to come back as nothing, I have had blood test after blood test to only show that I can't retain Iron...I have been to physio, massage therapy etc, again not helping. I'm to the point of complete depression with everything that I have been going through to try and figure out why I have so much pain... just in the past 3 months, I have noticed things changing, bleeding all time, severe abdominal pelvic pain, I can hardly walk with lower back pain and have had a headache for the past 15 days straight....finally my gp sent me to get some ultra sounds for it to show that my uterus is enlarged and it is showing that I may have adenomyosis, which he knows nothing about and is sending me to a gyne... he has given me a heavier pain medication, on top of everything else I am taking for migraines, depression etc...when all it could be is the new diagnosis. He says that I should take birth control the treat, however I don't want that as it makes me very sick.... so I guess my question to you after reading my short history is, in your experience through all this... how did you decide on the best treatment for you? I am really torn, I don't know what to do....I know I am so tired of feeling bad everyday. thank you so much again.
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Tina on 21 March 2013 10:08
Hi Danielle, I am really glad I found you. I am 44 years old and have already completed my family, been diagnosed with adenomyosis since a year and have seen a few doctors (5 of them). Some asked me to wait and some asked me to remove my uterus (hysterectomy). The pain is getting very bad especially few days before my period. I am also gaining weight from my normal 50kg to 57kg now. I am the kind of woman who hardly can put on weight no matter how much i eat. I feel bloating all the time, I actually look like 3 months pregnant. Besdies these there are other minor symptoms too, they are really iritating. The thought of getting a hysterectomy and going through the pain really kills me. I really wish there is other alternatives of treating this disease than removing the uterus. I pray hard last night and I saw your website today. Thanks!

Nic McBlane on 22 March 2013 00:57
Thankyou..... ive been diagnosed with adenomyosis with suspected endometriosis. Im 36 and have been living with all these symptoms for over 2 years thinking im just getting old or I just overdid it at the gym. Im scheduled fir a hyster on 17th april. I have 2 kids and definitely dont want anymore. Im happy that something can be done to help. Im so glad that there are people who have told their stories as I now feel a lot happier with the decision. Thankyou all of you.
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Danielle on 23 March 2013 10:03
Dear Nic, thank you for your message. I am glad the website has given you the help that you needed. Please check the pages re: preparing for surgery and thereafter and of course if there is anything else that you need, please let me know x Danielle x

Teresa on 29 March 2013 21:42
I have possible adenomyosis and go for 1st pelvic ultrasound on Monday apr 1st. I have anemia that has depleted my serum ferritin and my GP is very adement that I should not nor can I afford to loose any more blood. He told me i have to leave the Gyne followup in one month with answer. I was feeling better and had some energy and when he told me my serum ferritin was still low with my hgb at 130 which came up from 70. He was very concerned and told me to seriously consider a hysterectomy. I am just looking for some understanding and some support. Thank you Teresa
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KRT on 30 March 2013 12:57
I have had clotting with periods for approximately 22 years every period. Ranging from the size of a quarter to golfball. Took 9 yrs to get prego w/ our beautiful son. My original gyno/ob re this issue was an idiot. I even took in one of my extra big clots to show what I was talking about. Response? Was told to try a bloodthinner/pain med like motrin (I was on Vioxx at the time) In the last year, I have been unable to keep a tampon in d/t the pain gradually till last 2 periods no tampons at all. I have gained 15 pounds in last 2 months and my back pain has been UNREAL (I live w/ 2 disc herniations in low back by the way)I am always bloated and even more so around/during period time. I constantly feel like I have a bladder infection (going to have hubby start timing my dashes to the bathroom) When I sit down w/out thinking feel like someone is shoving a knife up my butt, sex hurts routinely now,I get chills, I get light-headed (chills n light-headed assume d/t anemic now) get sharp quick pains in abdomen throughout cycle and have noticed in last month or so gradual onset of my calves feeling tight. Had ultrasound. Enlarged uterus (no kidding!)and endo biopsy negative (THAT was in my top 3 worst pains EVER and had JUST started my period to boot) and just had pap. Dr wants to do exploratory surgery and said 100% sure either adeno or endo or both. Anyone else have the calve tightness and chills?
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Danelle on 06 April 2013 21:45
Dear KRT the calf tightness is not a good sign. That indicates to me that something is really not right. The adenomyoma are constantly haemorraging into the lining of the uterus wall, so it makes no sense that they are expecting you to take blood thinners when you are bleeding in this way - since it will make the uterus even more bulky and will change the composition of your blood too much. Please go back to your doctor, tell them about your calf muscles and that you are getting chills. It sounds as though you may well be anemic and need to have a blood test and have it regularly monitored to ensure that you are able to get through the next few months with an iron boost. Often this issue is overlooked and believe me, it is dangerous not to deal with it. Be calm about it and if your doctor does not listen get a second opinion. For the record, do not be tempted to get iron tablets from the chemist or go crazy with your diet in protein terms until you know exactly what is going on, that being said, please do try and ensure that you are eating dark green vegetables, fish, chicken, turkey, beans etc depending upon your preferences. Keep in touch and let me know how you get on x Danielle x

Kelly on 21 April 2013 01:11
DANEILLE You misunderstood. ORIGINALLY, I was told to take a type of blood thinner years ago not of recent. Lapro/Hystero/DnC on Monday folks

KRT on 29 April 2013 22:29
Danielle< Well had my lapro n endoscopy on Monday 4/22 Adenomyosis and endometriosis. Left ovary "engulfed" in adhesions. Must have hysterectomy can't vaginally d/t hips too small(pelvic arch) and doctor told hubby extensive damage as well. Dr is REALLY into the Da Vinci hysterectomy as well....researching alot on that one alot of either really good or really bad comments re procedure.

KRT on 30 March 2013 14:10
ALSO when I have to BM it feels like period cramps!
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Teresa on 30 March 2013 15:14
Oh my just when I think I am in a bad place someone else brings forward moments that make my situation seem less worrisome. I hope you find an answer and solve the problems that have been plaguing you. I get chills only when my iron is depleted. So during and just after periods. I have had restless legs. Teresa

KRT on 30 March 2013 16:01
FYI sorry to hear about what you are going through Teresa. I wasn't trying to ignore everyone else's plights just wanted some insight from anyone other than I guess when I read my posting to myself I realize I should probably be a poster child for one if not both of these condiitions....
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Teresa on 30 March 2013 19:14
Dear KRT: No offence taken really I can only empathize with you in some small way. I have had trouble finding family dr since mine passed away two years ago and before that probablly suffering since 2006. with mysterious symptoms. Am relieved that new doc is on it. I hope that you get the diffinitive answers you need as I think everyone here can agree the waiting worrying and not knowing is the worst thing ever. Because when you think the symptoms are there and painful and others do tests and everything is normal you then start to wonder if you are crazy. You aren't really good luck to you with your procedure. Teresa

KRT on 30 March 2013 20:34
Teresa Thx u n goodluck to you! Well hubby knows I'm not crazy he's seen them and has witnessed the stabbing pains and the bloating and weight gain so it's not all in my head....just in my gut! lol Surg on 4/22 will update. Keep me posted on you as well
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Teresa on 02 April 2013 12:59
Well i went yesterday for plelvic ultrasound and they did a transvaginal ultra sound too. I am still in pain from it. It did not hurt to get it done it was after I am bloated and my belly feels as if it did lots of sit ups sort of. Oh well now I have to wait for a while to find out what the deal is.
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Danielle on 06 April 2013 21:38
Dear Teresa, thank you for your messages. I am glad to hear that you have had the best tests to identify whether you have adenomyosis. It is frustrating having to wait though, however, in the meantime, please feel free to take a look at the Facebook group updates on how to eliminate estrogen from your diet which will help generally and I can recommend the LIVESTRONG website as it has plenty of advice in relation to this also. Keep in touch x Danielle x

Kelly on 02 April 2013 21:33
Hmmm when do you have your follow up?
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teresa on 03 April 2013 03:41
Kelly My follow up is end of apr because that was the soonest I could get in. Doc is away for holidays through the two weeks in Apr and then she has teaching commitments and end of Apr is earliest for us to meet up. mY FAMILy doctor will get copy too so will probably hear from him if something serious arises.
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Kelly on 03 April 2013 13:54
That is good to hear Teresa. Well we both will have some answers about the same time then!
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Erika on 10 April 2013 18:30
Hello, I just turned 39 and have recently been given an adenomyosis diagnosis. I have had terrible periods since I was about 17 and was diagnosed via laproscopy endometriosis in my early 20's. I have two boys (the first conceived through IVF because of the endo). Unfortunately, many of the stories listed above hold true for me as well. I have consulted with doctor after doctor without any answers, but have been determined to keep going because I KNEW something was very wrong! I feel just terrible and have about 75% of the symptoms of this condition. What I don't understand is the PMS-type irritability/mood swings. Does anybody know what about this condition cause that, specifically? Also, the fatigue. I can only assume the bleeding factors in, but even mid-month, when I am not having my period, I am beyond exhausted. What causes the fatigue? I read about the OSADA procedure, but that would appear to be only at one clinic in the USA. Does anyone know anybody who has had this done? What a great site! I am learning so much! Thank you! Thank you! Thank you!
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Danielle Wright on 12 April 2013 10:35
Dear Erika, thank you for your message. Unfortunately the estrogen overload does create these PMS and PMT symptoms you describe. It is not natural to have that much estrogen in your body. The fatigue is caused usually by low iron store levels in your body or anemia. Remember with this condition the adenomyoma are leaking blood into the wall of the uterus little and often (this is what makes the uterus bulky) and then you have a very heavy monthly bleed on top of all that- so it is vital that you get checked for both of these x Increase your diet with turkey, chicken, fish, beans, brocolli, cabbage and other good protein sources and anti estrogenic foods. The LIVESTRONG.COM website has lots of great suggestions for food etc in this regard. If you are anemic, stick to the medicine you are prescribed and go back regularly for check-ups to ensure that you are keeping your iron levels where they need to be. In answer to the OSADA question, I will ask the question again on the Facebook page, as to date I personally only know of two women that have had this proceedure, but would really like to hear from many more. Keep in touch and take care x Danielle x

Erika on 13 April 2013 18:35
Thank you so much for helping me make sense of this. Next step is all of the tests to confirm and then it will be time for some big decisions, I suppose. This condition is ruining my life and takes so much of me away from my children, which is so hard to take. I am determined to resolve it one way or another and at this point, I am choosing to give thanks they aren't suspecting something worse. I hope the tests prove that as well. Thanks for all you do!

katrina dale on 12 April 2013 10:38
I have been experiencing lower pelvic pain for at least three years.I am 47 and have a son aged 11.Two years ago I had an ultrasound scan that revealed "possible small adenomyomata".I was told with a follow up consultation that there was little that could be done other than taking analgesics or to have a hysterectomy.I was not happy as I have the pain for at least 14 days of the month. Is it unusual that I have pain from mid cycle,it is worse during the night and wakens me with a dragging dull ache .I usually feel better if I get up?.My other symptoms are mainly similar to PMT .I dont function well for at least half of the month.I am active , healthy and walk a good distance most days.My periods are still regular and although heavy with some clotting they are manageable ;infact it is a relief when they start!..Should I be asking for further tests and a second opinion as I feel the symptoms are worsening. Thankyou for any advice Katrina
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Danielle on 15 April 2013 18:36
Dear Katrina, yes you should at least have an appointment to discover the extent of your condition as it is now. This condition can develop in some women silently, and in others it can cause absolute havoc. Your symptoms appear to be increasing and because of this, you may find it helpful to keep a note in a diary so that you can monitor patterns and how much disruption it is now causing you. It makes sense to take notice of your symptoms, relay this information to your surgeon and try and make a plan of action to ensure that you - as far as is humanly possible - can work towards a more realistic timescale and action plan to manage the pain and the condition overall. Keep in touch and let me know how you get on x Danielle x

Jenny on 20 April 2013 16:35
Hi Danielle, I am now 4 days post laproscopic total hysterectomy including removal of cervix and both ovaries and tubes for adenomyosis. HRT was started the day after surgery and I have to say I am doing really well. I had quite extensive scarring from previous surgeries and endo was quite extensive to kidney and ureter on the left, but once pain was under control I was ok. Now I just need to recover and then can get on with my life, which at age 35, with 3 small boys and a nursing career, is quite busy! I don't feel like I've lost any part of being a woman, in fact my uterus and associated bits were the bane of my life that I am very glad to be rid of! To all those that have been lucky enough to have had their families, and are considering this surgery, it is a big step for you to decide, but not to be scared of. I'm very happy with my decision and looking forward to shifting the weight I have gained over past few months. Sending you all loads of love and luck with whatever you all decide to do to manage this terrible condition, Jenny x
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Danielle on 20 April 2013 18:21
Dear Jenny, thank you so much for your message x I am very pleased to hear that you are in recovery mode now and looking forward to a bright new future. I am very grateful that you have also included in your message a positive note to all those who have yet to have surgery. I will post your message on the Adenomyosis Awareness Month page to spur others on to help them further on their journey x Many thanks once again x Danielle x

Teresa Welsh on 21 April 2013 19:42
Dear Danielle: I have adenomyosis and presently for the pain am taking 2 ex st Advil and then waiting for couple hours and then 2 ex sth tylenol. Hve found that the pain subsides but comes back with angry vengince. is there anything else that I could do for the aggrivating pain. Squeezing down does not work even my breathing from giving birth does not work. Help me please Thank you
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Danielle on 22 April 2013 11:20
Dear Teresa, thank you for your message. The pain associated with this condition is very difficult to control since it can be sudden and long lasting and then grumble on as a muscle ache not just affecting the uterus but also the surrounding organs, nerves and muscles. You may find that gentle exercise might help a little depending upon the area of pain. If for example you are experiencing a great deal of pain down the thighs and legs - swimming may help somewhat. Also, a warm bath will also generally assist in numbing the pain where the muscles have consequently become tense. The water will go some way to relaxing the areas affected. Massage is very beneficial and at night, if you can tollerate it, lavender helps aquire a deeper night's sleep and that in turn relaxes the body somewhat in order to be able to deal with the pain better. The British Pain Society have published some excellent literature that you may wish to read that helps in understanding the management of pain, so I have included the link for you: http://www.britishpainsociety.org/pub_patient.htm In the meantime, I should point out that until the adenomyoma have been dealt with via a suitable method of treatment - the pain will continue, so this is why it is extremely important to have a plan of action in regards to adenomyosis.

Teresa on 22 April 2013 19:59
Thank you so much yesterday was the worst pain I have ever felt normally I can handle it but for some reason this day of all days I could not I will look into your suggestions thank you.for being here thanks. I see gynecologist on Monday the 29 hope for some answers to this take care.
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Megan on 23 April 2013 23:09
I was just diagnosed today with adenomyosis from my new ob/gyn. I have had heavy and long and painful periods my whole life and it was something I just lived with because I didn't know any different. I have had abnormal cells on my cervix since I was 16 years old and have never had a normal PAP in my life and thought maybe that may have been part of it but now I know that probably wasn't it. I have 3 children and have been blessed to have absolutely no problems with my fertility but after my 3rd was born (almost 2 years ago) I decided I wanted a more permanent form of birth control and had a tubal ligation. I had gained about 40 lbs with my last pregnancy and noticed shortly after that my cycles became abnormal and if you can believe it heavier and more painful than before. I went to my ob/gyn and was diagnosed with PCOS, which made no sense to me because I had never had any symptoms of the disorder before that and the doctor said it was because it triggered when I gained the weight. So within 6 months I dropped 45 lbs and am the thinnest and healthiest weight I have ever been but I was still noticing an increase in the symptoms since my tubal and adding migraines and moodiness, especially around my cycle. I also starting noticing that my bladder would feel full when it really wasn't (almost like I was pregnant) and I went to a doctor for that and was told that the muscle of my bladder just may be spasming (maybe from having kids) and that I would just have to live with it. I ended up switching my ob/gyn about 2 months ago when I was getting stabbing pains that would double me over during the first couple days of my cycle and this last cycle ended me up in the emergency room because the pain wouldn't stop and I couldn't sleep or even walk. Today I went for a follow up and I thought it was my ovaries (which are completely normal) but it ended up being my uterus. My doctor saw on the ultrasound the rough texture look to my uterus and showed me what it was supposed to look like and gave me the name of the disorder. I have a procedure scheduled in a couple weeks that might interest women out there that have this. I believe it is fairly new and can be done in the doctors office instead of the hospital. The website for the procedure is www.heroption.com. The only down side is that you have to be finished having children but the plus to it is that you can keep your ovaries and other female organs and so your body wont being going through instant menopause like with a hysterectomy. Thank you Danielle for creating this website because there is not much information out there and until today I have never even heard of it but I am so thankful I switched doctors and have hopefully found a solution and have the knowledge that I haven't been going crazy and that all these symptoms have a diagnosis behind them now!
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Danielle on 26 April 2013 18:20
Dear Megan, thank you for your email and passing on the details of this treatment. I have posted a question on the main Facebook page to ask others whether they have had the treatment and it will be interesting to see what the feedback is x In the meantime, keep in touch and let me know how you get on x Take care, Danielle x

KRT on 25 April 2013 21:01
Well had my lapro n endoscopy on Monday 4/22 Adenomyosis and endometriosis. Left ovary "engulfed" in adhesions. Must have hysterectomy can't vaginally d/t hips too small and doctor told hubby extensive damage as well. F/u in 2 weeks will know more. I didn't get 2 talk to doc after surgery.
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Teresa on 26 April 2013 01:58
wow hope you recover from procedure. But now you know. I will think happy thoughts for you and pray lots. get better soon!!!

KRT on 27 April 2013 04:40
Thx Teresa. F/U appt 5/6 so will get all the info. Did you find out anything yet?
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Teresa on 27 April 2013 05:51
No my friend I go monday morning so am a little nervous but want to know what is wrong or right with me. Hoping for some news anything that will help with the chronic ache and the constant loose BMs and the painfull periods. so will post here when I find out and what I find out.

Teresa on 29 April 2013 21:42
Well went to appt today and the verdict. Uterus is large in size. Adenomyosis is likely no fibroids. Ferritin is low and we all agreed I can't bleed anymore. Mirena I would not use because the side effect is unpredictable and uncontrolled bleeding. So am taking with next menses cyklokapron only during period and then Scheduled for Hysterectomy on Sept 25 of this year. Now there is clarity and a plan in place. Thank you everyone for your support and comisseration. God bless everyone and will keep you posted on meds and such. Thank you again Danielle for support and this web site.
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KRT on 29 April 2013 22:16
Just checked in and saw your post. Glad you have "answers" finally too. It is SUCH a relief to feel validated. I have f/u appt next Monday however Dr really pushing for the Da Vinci hysterectomy. I'm nervous about that but am researching EVERYTHING I can get my hands on re the procedure. I hear either fantastic or horrible results. UGH

Teresa on 29 April 2013 22:37
Please don't focus on what people on the internet say. The negative comments usually stick out like a light bulb in the dark. Do your research as far as surgery goes and keep it scholarly information. I discussed the internet and all the possible treatments for me with the dr today and she said that to me. People that are satisfied with a procedure dont usually comment on the internet. Because they are happy and moving on positive comments are hard to find. Knowledge is power and you have all these educated people cheering you on. Don't be afraid. Be positive. good luck to you and hey thank you for being there. I will still post about my drugs and stuff . But a releif to finally know. I cried today when I got in there. Because I was afraid and unsure. please remember you have people around you everywhere cheering for you and keeping happy thoughts for you.

Danielle on 02 May 2013 10:54
Hi Teresa, so very pleased you now have surgery scheduled. You will now really be able to look forward to a fantastic Christmas - pain free x Danielle x

jane noonan on 08 May 2013 21:38
Good Evening and thank you thank you thank you. Im from the UK and after nearly 20 months and countless visits to my GP (who were utterly useless) I have finally been diagnosed with adenomyosis. Ive had years of agonising pain, 2-3 week long periods with swelling that made me look 6 months pregnant. Unable to eat normal sized meals without getting painfull heartburn and having trouble swallowing. My hair has been falling out to the extent i have now half the volume of hair on my head that i used to have. And the worst thing for me, ive slowly put on over 2 1/2 stone. No different eating habits just slowly slowly gaining weight. Despite trying weight watchers, and god knows how many other diets to no avail whatsoever. I was told ive been over producing estrogen for years ??? which would fit with my symptoms but im so depressed about the weight, somedays i dont eat at all because im so paranoid about it now. I look at my friends and work collegues as they tuck into their lovely lunches and go out to dinner and have a three course meal. I just darent go out anymore. Is there any advise you can give me re loosing the weight. I go to the gym 3 times a week, walk our dog regularly but slowly slowly i gain more and more weight. Im having a hysterectomy soon but my surgeon says i should keep my ovaries, whilst i dont want to go through the menopause early (sorry should have mentioned im 47) but the thought of just gaining more and more weight just fills me with dispair. Any advice would be greatly recieved. Kind regards Jane Noonan
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Danielle on 13 May 2013 23:17
Hi Jane, I'm from the UK too! ;o) Estrogen is an awkward hormone. Too much and the body's cells become unhealthy, not enough and menopause begins along with bone degeneration and heart disease etc. If you can, keep your ovaries. Once you have had your hysterectomy your body will slowly start to recover, your hair WILL grow back and the weight will come off - slowly - and that is what you want a slow progressive change back to normal. Fast and quick solutions are pointless as your body will take it's own time to heal and you will use up your stores of what has built up when you are recovering and back to your normal levels of exercise. I always like to recommend the LIVESTRONG website as it has some wonderful foodie advice regarding avoiding estrogenic foods that we eat every day. It is smart to filter these out before surgery. Also try and take out anything with sulphites in it, do a google search and make a long list and stick it to the outside of your fridge! Breads with yeast are another no-no since these have a negative impact on the bowel and surrounding tissues generally, and when everything is trying to heal well, you need a soft tummy and plenty of fluid to get all the toxins out and to help the lymph nodes to do their thing! Massage is great to help the excess estrogen out too as is good regular gentle exercise to start with and then building up gradually as you become fitter following surgery. I hope that has given you a few things to take a look at x In the meantime, all the very best with your surgery and recovery x Danielle x

jane on 16 May 2013 23:18
Dear Danielle thank you so much for the advice. I have to tell you your site has become my 'bible' and i have done exactly as you have suggested on your site. All cosmetics make up, shampoo etc etc is now paraben free. All the fresh fruit and veg i buy now is NOT in pre packed plastic packaging and I was organic anyways. I take onboard your comments re bread i had not thought about that I will investigate further. I have been on the Livestrong site as you suggested and found it to be of great help. I have to say that the lack of information about ADEO is astounding, I thank god for your site. Ive suffered with this for nearly 2 years now as i said my gp's were useless. I had the bladder capacity of a tea cup, which meant i was up at night going to the loo aprox 10 times a night. The pain from my pelvis down my right side and right leg was so bad if i turned in my sleep it woke me up every time i tried to turn over. Sometimes it was so bad i could not drive as i couldnt put my foot on the excellorator it was just too painful. Nearly 2 years of broken sleep and insomnia is unbearable, and the pain just prior to bleeding was just like contractions, i litterally thought i was going into labour the first time it happened. But then of course it now happens every time and its just agony. Therefore i am looking forward to my hyterectomy im having done by keyhole just got to wait for my appointment which unfortunately could be anything up to 18 weeks away. Thats the NHS in this country for you. Once again thank you so much for taking the time to reply to my post and thank you for creating your site in the first place. Kindest regards Jane
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Anita on 20 May 2013 09:30
Hi, well, I now have a date for surgery!! Yayyyy, After being on Zoladex for 4 months and the pain from my Adenomyosis did recede quite a lot, to the point that I had actually got a life back! Until the side effects kicked in so it was the devil and the deep blue sea! However, even though the pain is now returning it is manageable until the hysterectomy. I have been very lucky in the fact that my husbands private medical insurance covers pre-existing conditions. I have had my consultation with the same consultant that I have been seeing on the NHS and who performed the lap. However, even though there was nothing wrong with my overies, he is of the opinion that they should be removed. His reason - they have discovered that women that have this procedure usually end up back a couple of years later with ovary problems and need another operation to remove them! Has anyone else ever heard of this before? I am rather reluctant to have them removed if I don't have to as I know I will have to go straight onto HRT. And after having the awful side effects I had with the Zoladex and HRT, I do not relish the thought of going through it for years to come. Am I within my rights to insist the surgeon leave my overies alone if they are healthy??? Many thanks, Anita
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Danielle on 20 May 2013 22:56
Hi Anita, yes - of course you are in your rights to seek a second opinion. Most surgeons would prefer to leave them well alone to ensure that you benefit from natural hormone production - unless of course there is another factor such as cancer involved in your family history x Danielle x

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