Adenomyosis: Hi, I was diagnosed with endo... - Endometriosis UK

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Adenomyosis

Ejrn profile image

Hi,

I was diagnosed with endo last year and had excision surgery this year. My surgeons are adamant that they removed every bit of endo they saw, and mine is only stage 2. However, 6 months on I have experienced no relief at all and am now starting to wonder whether I could have adenomyosis. Was wondering what other peoples symptoms / experience of this was and how they got diagnosed? I have copies of my ultrasounds from the hospital which could be useful but these were never looked at by specialists. Thanks!

25 Replies

Hi I was diagnosed with Adenomyosis via MRI scan. Nothing showed up on an ultrasound. It shows a bulky uterus on my MRI and I have symptoms such as very heavy bleeding through clothes, periods for months at a time, labour like pains, anaemia and deficiency in other nutrients too. Hope that helps. Ask anything else you want to 😀

Ejrn profile image
Ejrn in reply to AllthatGlitters

Thanks for your response - thats really interesting as have just had my hospital notes back and I am anaemic and low in red blood cells, ferritin, b12 etc. My pain is still so severe and feels much more muscle related all across my back and down my legs, just cant understand why its still so bad if the endo is gone!

AllthatGlitters profile image
AllthatGlitters in reply to Ejrn

I get pain that radiates down the front of my legs, I would definitely push for an MRI, I now tell the doctors what I expect 😀as it’s me living with pain and bleeding x

Ejrn profile image
Ejrn in reply to AllthatGlitters

Yes exactly! Now you've been diagnosed what were your treatment options? X

AllthatGlitters profile image
AllthatGlitters in reply to Ejrn

I have had 1 lap for endometriosis and 2 endometrial ablations which never worked as this usually helps with heavy bleeding. Take tramadol. Menefemic acid or tranexamic acid don’t work for me. Currently on decepeptyl injections whilst I wait for a hysterectomy x

Hi! I have adeno too. My pain comes during ovulation/mid cycle and is across my lower back and sometime down my leg too. As well as stomach cramps. I was the same and partially diagnosed after an MRI and then more definitely after a lap due to my uterus being "bulky" too! I also think the adeno is causing more bother than the endo but that's just my own gut instinct rather than any medical knowledge!

Ejrn profile image
Ejrn in reply to BikeRiderGirl

Yeah that sounds very similar to me, however they've never mentioned my uterus looking bulky during laps so not sure. What treatment did they recommend for adeno? Want to get it looked into but almost feel as though theres no point pushing now if they can't do much for it X

BikeRiderGirl profile image
BikeRiderGirl in reply to Ejrn

I have a merina coil which I think can help with both of endo and adeno as it helps reduce the size of the uterus wall/lining. I asked what else could be done about adeno as you can't remove it in the same way as endo and he said a hysterectomy but to wait and see if the coil helps first..which (touch wood/fingers crossed etc) three months in seems to be making the pain a bit less frequent and more managable.

Hello I read your symptoms and it describes similar to me. I have had a sub total hysterectomy though (and did have adeno) . Have you had a scan for the position of your ovaries? Mine are fixed, not sure to what! and that's what they think is now causing the pain around ovulation. It's the worst pain for me, much worse than around my 'period'. Hope you find some relief with the coil. I got a good couple of years out of mine before my hysterectomy.

Hey thanks. I did have an MRI and then lap but they didn't mention anything about the position of my ovaries. So hoping that's a good thing! I'm hoping to coil continues to improve things, it's good to hear it helped you for a while.

April1983 profile image
April1983 in reply to Gardenist

Hi how many years have you have had you’re hysterectomy I’ve had mine coming up 4 years and I’m getting all the same pains back thinking endo has come back x

Gardenist profile image
Gardenist in reply to April1983

Hello 5 years ago but I've been waiting on further surgery for just over a year. It's definitely back in my case. Sadly time for surgical menopause. Sorry you are getting your pain back. Some of us only seem to get short term gains xx

April1983 profile image
April1983 in reply to Gardenist

Yes what are u symptoms I’ve been on and off in pain for 6 mnth and been putting it down to gastrointestinal problems but I’ve just been reading it causes that also then I noticed blood which I did not like Also are you on hrt xx

Gardenist profile image
Gardenist in reply to April1983

Not on HRT I still have my ovaries, that's part of the problem I think. It feeds the endometriosis. I have some bleeding too as there is endometrial tissue left in the cervix. My pain is unbearable now. It's like being in labour. Running out of pain medication options and pain is taking up half of my cycle and making life hard. Hopefully next surgery will make a difference! I would definitely get the blood checked out if I were you.

April1983 profile image
April1983 in reply to Gardenist

Yes I’ve still got my ovaries but my hormones was going crazy and had blood tests and I was low so went on that about 2 years ago and fill a lot better in my self no one warned me about hormones and just kept getting offered depression tablets ?? But been seeing this grows back more with it

Did u keep the cervix what scans have u had I’m waiting on referral xx

Gardenist profile image
Gardenist in reply to April1983

Yes I kept it last time but my cervix is being removed next week. I've not had any scans as this is my 4th surgery and so I asked to go straight in without diagnostics this time. It was noted 5 years ago what would need to happen next. I just tried to put it off. Sadly then covid knocked the waiting lists sideways. Hope your referral happens soon.

I was so sure I had adeno and an MRI showed nothing. I eventually had a hysterectomy as I couldn't cope anymore and when my uterus was tested they said there was loads of adenomyosis there. I hope you get answers and some relief x

Ahh interesting, I feel like its really not spoken about much so even harder to diagnose. But thank you appreciate it Xx

I have stage 4 Endo and suspected adenomyosis. I get lower back and pain all around my right hip and down my right leg but do have bowel involvement. My uterus has been described as “bulky” too which is a sign of adenomyosis I believe. My consultant explained that you can’t really fully diagnose unless you have a hysterectomy. I’ve always had low iron as well. I hope you get some help with your pain xx

Hi, I had a 3D sonohysterography to diagnose adenomyosis. Had previously been diagnosed with endo/though two doctors didn’t think I had it/it was a bit confused. My symptoms got better (and the best post pregnancy and BF) but a few years ago I had pain in my lower back sharp shooting pains up my coccyx and very heavy bleeding. Painful periods (when I was in my early 20s, used to faint/be sick with periods) and then pain on ovulation got worse in my late 20s and early 30s- bloating developed and eventually pain was every day for a really awful 6 months. I still don’t know why it got better-just wanted to say that it is possible. I really trust my current doctor and I probably don’t have endo -it is prob only adenomyosis so it can be that much pain only from this in my experience.

If you have any more questions just shout-it’s such a horrible road when in pain. X

You could have adhesions . I had a lap last year and it made me worse now I am left with adhesions where they took the endo that are pushing on the nerves causing pain. It’s just a never ending story 😕

Ejrn profile image
Ejrn in reply to Ziyahaze

Yeah I also thought this could be the case, just wonder if my last surgery was worth it, am scared I’m doing more damage than good! Xx

Yh personally I won’t be having anymore surgery as it made me worse . Good luck with whatever you decide xx

Hi,

I was convinced for 2 decades I had Endo. I went to my GP only a few years ago just because i finally built up the courage after being laughed out of A&E on a couple of occasions after having excruciating period pain. My GP seemed to think it was Endo and referred me to a Consultant who also concurred. Looking back it was based on a checklist of couple of symptoms and not even a physical exam let alone scan. I was offered contraception but with my mental health particularly low when I have a period I just couldn't take the thought of adding more hormones to the mix. So just got on with it. I have now been trying to get pregnant for three years. Im 39 soon so thought it time to get things moving. Blood tests my GP ran were fine and they were going to refer me back to an endo specialist rather than fertility services. I have gone private now and my consultant was quick to say without any notes or exam she didn't think I had endo- I wont lie it was crushing and confusing. But being pragmatic I had a ultrasound literally yesterday as the end goal was ultimately to resolve fertility issues and the radiologist gave me a run down of findings which included adenomyosis. I had never heard of it but bemused to find symptoms include pain and heavy bleeding not too distant from Endo. That is the confusing thing- so many conditions have similar symptoms its easy to get boxed into what seems appropriate. From my little bit of research adenomyosis is assumed to occur largely 40-50 age group but if I only have adenomyosis without Endo I have had symptoms since 15 :/ I am guessing age was in a factor in my initial Diagnosis of Endo. As a run down of symptoms I tend to get just before and most of period- pain/cramps in my lower abdomen, and pain lower/middle back. I also get most way through extreme bloating (ironically I can look 7 months pregnant peak period), I bleed quite heavily (but sounds like it could be a lot worse) I can only say I use the thickest pads I can be doubled up and I will even use period knickers and still leak through my clothes/bedding. I also get extremely fatigued just before and throughout my period until a Few days after. I used to have a short cycle between 23-25 days but this is now more 27 days but I tend to find this depends on how I eat. If I avoid wheat/gluten/refined sugars and exercise regularly I find my cycle gets longer and have less bleeding days and less pain days. Luckily I only tend to bleed 6-7 days med/heavily with some bleeding 1-2 days either side of this. I also bleed in between periods particularly if I stick to running. I keep a close on my cycle just to be ahead of things and plan work and commitments around it as I know I will struggle with pain, bleeding and fatigue. I am yet to book in with my consultant for next steps but am so glad I went private given the NHS waiting times. Given the treatments for Adenomyosis it maybe at odds with getting pregnant but trying to be hopeful at the moment. All I can say is keep pushing with your Dr and lots of luck, as we can all appreciate on some level what you are going through x

Hi I had adenomyosis and it took years to diagnose. Eventually had a full hysterectomy at 44. I'm 53 now and it was the best thing that happened to me. It gave me my life back after years and years of agony, severe pain I mean, I'd faint. Legs would hurt as the pain crawled down them. Horrendous PMT,

Mandy

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