Adenomyosis Awareness Month

April is Adenomyosis Awareness Month. During the month of April we feature stories from women around the world who have been on the same journey with this condition. (N.B. Where applicable, names and details will have been changed to protect identities.)

Our first adenomyosis experience comes from Sarah:

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

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

I have been to your website and I want to share my story. I am a 35 year old woman who was diagnosed with adenomyosis seven years ago after I was found to be severely anaemic when removing my appendix, almost needing a blood transfusion. My periods had become more and more severe, extremely heavy and affecting my social and romantic life as well as my health.

I tried the mirena coil and the pill but nothing worked, however half a year ago I discovered tranexamic acid which has changed my life! I take nine tablets for the worst three days and I can leave the house and there is no excessive bleeding where I have to use plastic bedsheets, in fact I can sleep pretty much normally even through the first days - which I have not done in years! The period gets longer, nine days of bleeding, but it is so much less in total and so much more manageable I am thrilled. I actually feel like I can have a normal life. I am now trying to get pregnant, hoping that the relative normality of things will make it possible, although my fertility doctor said my uterus was severely affected by the adenomyosis and much larger than a normal uterus. Hopefully it will still be possible. Best regards, Linda

My Story by Nishma P

“I would like to share my story in hoping that I can raise some awareness on Adenomyosis. I had turned 27 years old and I suddenly started to experience terrible menstrual cramps which I can now say were similar to having contractions. This was the first time that I had ever experienced a menstrual cramp. The GP completely dismissed all my other symptoms and said that all women go through the usual ‘women problems’ which made me think it was normal to feel that way every month. In addition to this I also started to have ovulation pains. I was prescribed strong pain killers which I had taken for a year to provide me with pain relief. Initially, the painkillers did wonders for the pain but a year had passed and I noticed the painkillers were not working for me anymore. Without knowing it I adjusted my lifestyle around the pain which meant no socialising around the time of the month, having a hot water bottle ready for when I came home after work and taking things easy. It wasn’t until I was referred to an occupational health adviser by my employer who told me the symptoms that I was experiencing were not normal and asked me to be firm with the GP and request to get a scan. I finally went in for a scan which showed one side of my uterus to be abnormal in size and I was referred to a gynaecologist immediately. As I hadn’t started family planning the advice was to not perform any surgery and try to deal with the problem by being put on the contraceptive pill. The pill made me lose weight, I was unable to eat and suffered from constant nausea. The pill did not work for me and I continued to have severe menstrual cramps. I ended up having keyhole surgery followed by a MRI scan. This was when it had been confirmed that I had adenomyosis. I was bluntly told by my gynaecologist that I was at high risk of infertility and if I wanted children in the future that I would need to start family planning now. I was 28 at the time and in no position to start family planning. This news had hit me badly. I was healthy, followed a good diet, exercised, didn’t smoke or drink much so I couldn’t understand why this had happened to me. I hadn’t even thought about having children. I was leading a busy life in the city and suddenly I had to think about my health and future. As I wasn’t in a position to start family planning my gynaecologist put me on a one year plan to stop my periods completely which would help to reduce any build-up of cysts and at the same time shrink the cysts. I went through monthly injections and I have to say not having my period was the best I ever felt. I was pain free, felt physically stronger and happier. A few months later I got engaged and my wedding date was set for one year’s time, the same time I was due to come off the injections. My husband and I agreed to start family planning as soon as we got married as we didn’t want to regret the decision of delaying the process considering the problem I had. I prepared my body for pregnancy and I tried to do everything from having acupuncture to eating the right food and taking the right supplements. We were lucky to conceive within a few months. However, after being told of all the complications that I may have during pregnancy this made me feel constantly in fear. My anxiety levels had increased and I didn’t want to tell anyone I was pregnant in case anything went wrong. I went through cognitive behaviour therapy which I found very helpful and would highly recommend this service. In my first trimester of my pregnancy I suffered severe nausea, I was unable to eat properly or even go past the bakery section in supermarkets without having to making vomiting noises. This lasted throughout the whole of my pregnancy. I had a few traces of bleeding but the doctors advised this was normal. I could feel something was not right but at every antenatal appointment my tests/scans all came back as normal. During my second trimester of pregnancy, one of my legs became significantly swollen compared to my other and I had unfortunately developed DVT in the left side of my pelvis. None of the doctors linked this to my pre-existing gynaecological problem. After a few trips to A and E I was put on blood thinning injections which I had to take twice a day for the rest of my pregnancy. The worst part of all this was the lack of understanding from doctors on how to deal with DVT in a pregnant woman. I was scared that something would happen to my unborn baby. I also had a fear of injections and I had to learn to deal with this fear. They say there is a light at the end of the tunnel and I gave birth to a healthy beautiful boy. Now I look back and I can’t believe I suffered in silence with the symptoms of adenomyosis. I always used to make excuses such as working too hard or leading a busy lifestyle for the symptoms that I was suffering. I am grateful that I found out this problem before I started planning for a family as it enabled me to take the right steps early on saving a lot of heartache. I haven’t written every detail of emotion that I went through as having my baby was worth every tear, fear and uncertainty that I went through pre and post pregnancy. I would urge all women suffering from any gynaecological problem to seek help immediately and to not accept this as a ‘woman’s problem’. I consider myself lucky but please spare a thought for the women that are going through fertility treatments as the emotions of going through this can be overwhelming for any women and we all need to support one another.”

My Story by Michelle D

So this is not something I would usually post about and to most people its probably a little embarrassing but whatever, nothing is ever going to change if people aren’t made aware that it exists.

Since I was 14 years old I have suffered with some ‘girly’ diseases ranging from Polycystic Ovarian Syndrome (PCOS), Endometrioses and more recently in the past 3 years or so, have been diagnosed with Adenomyosis.

April is Adenomyosis Awareness month. Adenomyosis occurs when the lining of the uterus penetrates the muscular layer of the uterus. The result is an enlarged, tender uterus, causing labor like contractions, heavy bleeding/haemorrhaging, bleeding in the muscle and clotting among other things. The disease is confined to the uterus and is more common in women who have had children, who have had a C-section and are typically in their late 30’s and 40’s. It is extremely rare in women who have never had children and the only cure is a hysterectomy.

The impact of these diseases on everyday function can be debilitating and the worst thing about it is no one can see it.

I’ve had eight different hospital procedures to remove and investigate these conditions, gone through monthly hormone injections ( that put my body into menopause), had gadgets implanted, landed myself in the hospital emergency department, travelled to Melbourne to see my specialist too many times to count, tried multiple treatment options, I take daily hormone tablets, pain killers and gained an alter-ego called Patricia (who if you ask Alex….is not a nice person!), not to mentioned the thousands and thousands of dollars on doctors appointments and medications.

I know what it's like to experience the most horrific pain imaginable yet still manage to sit at your desk or do an inspection and take a few deeps breaths and hope that it passes. Other times its best just to stay at home, crouch down into a ball and cover yourself in heat packs and take whatever pain killers you can get your hands on! It’s something that impacts me almost everyday, from not being able to go to work, stabbing pains, constant body aches, bloating, sleeplessness, hot/cold sweats, nausea and sometimes, just bursting into tears for no real reason at all.

There is also a strong sense of guilt that comes with it. You can’t imagine how it feels to have no control on how you may react to something in a completely unrealistic way yet at the same time, be totally aware that that’s not really you. It’s too late… I’ve just cried because I can find a tea towel and 2 seconds later I’m laughing about it. It makes you feel like your going crazy!

So what does the future hold? Adenomyosis and PCOS will impact on my ability to have children and due to the lack of research and funding for me its daily hormone tablets, pain killers, more hormone injections, likely IVF treatments and eventually a hysterectomy if I ever want to get rid of this horrible disease.

Adenomyosis affects thousands of women around Australia yet there has been little research dedicated to how it develops and effective ways to treat it.

I know I’m lucky to have the support of my family and friends and a partner like Alex, who I don’t know how but has stuck with me through some pretty rough and horrible times. Many women out there are suffering in silence. This post is not about sympathy, it’s about raising awareness.

So…. If you see me acting like a psychopath, remember….. It’s probably Patricia!

My Story By Wendy A

I wanted to share my story to raise some awareness and give some hope to sufferers that there is light at the end of the tunnel. When I was in my teens and early twenties I suffered greatly with my periods. The pain was extreme and would leave me writhing in agony at times, and the bleeding was so heavy I was scared to leave the house sometimes. Eventually, without any investigations, my GP advised that I went onto the pill. It worked wonders - I took it for over a decade until I was ready to start a family. I had my son when I was 38 (natural birth) and my daughter at 40 (emergency caesarian). Luckily I managed to conceive reasonably quickly though I did suffer a miscarriage with my first pregnancy. A year or so after my caesarian I started getting niggling pains in my abdomen. I put this down to my age and the caesarian and dismissed it. One afternoon in December 2014 I started getting bad abdominal pain. By evening time the pain was severe and I went to an out of hours doctor, who sent me straight to A&E. I was admitted and spent three nights in hospital while tests were carried out. A scan showed my uterus was bulky, suggestive of adenomyosis, and I was eventually sent home with Tramadol and told I would get an appointment with a specialist. The process from there on was long and frustrating. The UK National Health Service had been suffering from underfunding for a few years at that stage and it showed, although the standard of care I received when I did see people was excellent. I didn't see the specialist for 6 weeks, sitting at home taking Tramadol and unable to work or care for my young family. They were elusive about giving me a laparoscopy, instead referring me for another another scan (which took over 2 months) which then led them to believe my uterus was fine and I had an ovarian cyst. Finally I'd had enough and I threatened to put a complaint in, with the support of my amazing GP and eventually some 5 months after I was initially hospitalised I had my laparoscopy which confirmed my ovaries were fine and I had adenomyosis, as they had originally thought. I then made a massive pain of myself and pushed them into performing the hysterectomy, which I had in 12th June 2015. I regard that as the day I got my life back. The op was carried out vaginally and during the procedure they also discovered an abscess in my abdomen but were able to allow me to retain my ovaries. I spent two nights in hospital and then recovered at home. The pain was manageable although trapped wind, a common problem post-hysterectomy, was pretty painful. I drank a lot of mint tea! After a couple of weeks the post-operative pain passed and I remember the morning when, for the first time in 8 months, I woke up pain-free. It was an amazing feeling! I returned to work 6 weeks after the op. Initially I found it utterly exhausting and was asleep on the sofa every evening. Afternoons were a struggle. I experienced tiredness on and off for a few months but got there in the end. I have no regrets at all about my hysterectomy. It got me my life back.

I am really pleased to be able to share with you all an article published in the Huffington Post in Australia entitled

'Adeno... What? The Condition Of The Uterus You've Probably Never Heard Of'

which has been written by Michelle Charles - an Adenomyosis Advice Association member to support the ongoing Adenomyosis Awareness campaign. Click on the above link to go straight to the article. Thanks so much to Michelle - and thank you to everyone for your ongoing support in raising a global awareness! x Danielle x

As part of the April is Adenomyosis Awareness Month campaign, Michelle wanted to share her story to help others. If you would like to share your story of your experiences and journey with adenomyosis, please feel free to make contact.

Adenomyosis Advice Association

advice, support and information on adenomyosis

Adenomyosis Awareness Month