Adenomyosis support thread

[Redandpinkstripes]

I posted this week about there being a high possibility I have Adenomyosis after struggling for many years. Another poster came up with the idea of a support thread, which I thought was a great idea.
I have been in severe pelvic pain, that worsens significantly before my period. I have had a few episodes where the pain has been so bad, I've almost passed out. I've had the Mirena coil, which has helped a bit. I was put on Prostap, which was brutal as they thought it was fibroids causing it. They then added HRT, which made my symptoms 100 times worse. I was signed off of work for a month. The pain was so bad I ended up in a and e. Even Morphine didn't touch the pain. After stopping the HRT, the pain has reduced but I still have really bad days. It affects my bowel and bladder too.
The pain is deep in my pelvis and left ovarian pain that radiates to the back.
It would be great to talk to others that understand, as there is so little out there. It doesn't just affect you physically but mentally as well 🥺

Hi all would like to join this thread. Just had a TVS scan and she told me I have a cyst, fibroid and adenomyosis. The consultant I saw before the scan said he wanted to remove both ovaries and tubes due to the cyst and my mum passed away recently from ovarian cancer. With the adeno should I be pushing for a hysterectomy ?

What did you decide in the end? It is a big decision but I know others upthread have taken that step to huge relief. What else have you tried?

Has anyone tried continuous Utrogestan to help? I was first prescribed the pill (QLAIRA) but the effect on my usual good mood was bad to say the least. My GP called to see how I was getting on after a few weeks and agreed I should immediately come off it.

She then suggested continuous Utrogestan but instead I took it on a cycle, as I still have regular periods (age 45) so I thought this was best. However, if I forgot I would have a bleed at the wrong time, then not bleed etc. So, I have been taking it continuously for 3 months and it has been magic!

I spoke to the consultant and he has recommended a full laparoscopic hysterectomy so I'm relieved he made that decision for me . Hoping it helps and it reduces my risk going forward.

Hello I have just had a scan on Friday and told I have cystic spaces in my womb and need further investigating. I have heavy painful periods each month, makes me so weak and tired. I've had mirena suggested to me in the past. I'm not sure how severe anything is yet. The radiologist said it's likely the gynaecologist will likely want to send a camera into my womb.

Has anyone experience of this? Thank you.

Can anyone recommend any West Midlands based consultants who they've used? Feel free to DM me thank you.

So glad to have found this thread. Has anyone had unbalanced HRT cause their adenomyosis?

I'm 53, I've had almost painless periods throughout my life. I started HRT 3 years ago and was switched from sequential combined HRT to continuous combined HRT with no issues for a year before pelvic pain suddenly started end of November, ramped up so quickly I ended up in A&E whilst waiting to see a gyne privately. I have been in pain for 2 months now, the only sitting down has been for a super quick meal.

Gyne suspected adenomyosis after TVUS and was adamant that hysteroscopy and laparoscopy were the only way to confirm. Had both a week ago as was in so much pain she slotted me as an emergency; adenomyosis was confirmed, but not to what extent. I'm struggling to get clear information from this gyne, it's frustrating. I didn't get her first report until 20 days after the first appointment, and only saw after the surgery that adeno can be identified using MRI which made me quite upset.

My questions about completely stopping HRT have been met with her adamant not to stop, as she is a firm proponent of HRT. She pushed for Mirena coil which I refused, I've instead been put on a halved dose of Estrogel with the same Utrogestan. I'm recovering from laparoscopy and a day later decided to halt HRT hoping it would calm down adeno. What are the chances of it going away?

I'm going to switch gyne, butt fear that in the end I'll end up having histerectomy all because of HRT. It wasn't supposed to be like this ...

Cinnamon. I have had similar. I had a hysterectomy a year ago for Adenomyosis/fibroids. They ruled out Endometriosis. Like you, I ended up in A & E due to the pain due to hrt. They had put me on add back hrt, when I was on Prostap before my hysterectomy.
I thought I would be cured after the hysterectomy. I was pain free, until I started estrogel. The pains all flared up again. They now think I must have Endo, as my symptoms are estrogen receptive.
You have my sympathies. I have just turned 50 but had painful/heavy periods my whole life. I am waiting to see an Endo specialist x

@Redandpinkstripess I am so sorry you are suffering again. I wonder why breast cancer is still the main risk mentioned and no one says anything about the risk from endo and adeno! I intentionally started HRT at Hormone Health clinic in London, they do blood test so thought I had some assurances. It's been 10 days without HRT now, adeno pain is still unchanged and constant, it's getting depressing. Work is a nightmare, I'll have to return to the office next week, no idea how that would work out.

Was your hysterectomy advised mainly due to fibroids?

You are so right about the endo/adeno risks not being widely publicised. I have seen a private menopause specialist and I am taking progesterone pessaries, which so far haven't done a lot.
I have also left my job due to the mental and physical strain of it all 😢

Has anyone on here been given Medroxyprogesterone acetate to help stop bleeding?
I've been bleeding for a month now heavy with clots and the GP yesterday gave me this to try and stop the bleeding. I'm on cerelle which she said to continue and have one tablet of Medroxyprogesterone a day for 10 days to see if it helps along with sending me for an urgent scan on Monday.
I'm sooo fed up now. Gynaecologist refuse to offer anything other than the coil which I've researched and says it can make endo and fibroids worse.
I'm 30, done having kids due to a lot of pregnancy complications but they refuse to do an MRI, hysterocsopy, ablation and hysterectomy.

I'm so done with all this now and no idea what to do. I have PMDD as well.

I've got my gynae appointment this Friday to consult for surgery
Stage 4 endo with adenomyosis

@Redandpinkstripess Oh, I'm so sorry about you stopping work, but fully understand. I'm not sure what will happen with my work, I'm new to adeno and have only discovered the heat pad for pain relief, unfortunately it doesn't always work. It's been only 12 days since stopping HRT to say that would work long term. Which progesterone pessaries have you been put on if you don't mind me asking? I am seeing a new gyne next week hoping Mirena coil won't be suggested, the gyne who operated only mentioned the coil. TBH I can't deal with another procedure after having hysteroscopy and laparoscopy, I would prefer to try pessaries first.

I know, it has been awful as I'm now worrying about money :(
They are the utrogestan ones. I have them vaginally as I am progesterone intolerant, so it's better not to take then systemically x

@Redandpinkstripess I still think trying to work and going through so much physical pain is impossible. We are not all Naga Munchetty! If you can try not to burden yourself with worries about finances. I do understand as had a break from work for different reasons last year and only started in a new job a month before adeno hit. It took me a lot of effort to rejoin the workforce in a job I wanted so I just thought that it wasn't meant to be. I'm still working (from home since op), but if being off HRT does not help I don't think I'd be able to deal with physical pain and the demands of work. I'll check with my nee gyne about Utrogestan pessaries. I hated Utrogestan capsules anyway, really struggled to swallow them.

Ohh can I join: I was diagnosed last year March. Living with it, but my aneamia was so bad and iron tablets didn't work so I had an iron infusion to get my ferritin levels up before xmas as I can't absorb iron well and I felt really good, periods were not so bad, but am due on any day and I can feel that rawness inside already. Its hard.

Abbs 1 that is so young to be suffering. Can you get a second opinion?

At my pregnancy check 12 years ago a different registra at my ante natal check went through my notes and suggested I had more investigations after baby was born, life kicked in and I lived with it, and then finally got myself sorted. My emergency gynea appointment took 18 months but I was ill in between whilst waiting- but I still chased up. Glad I kept chasing, but so frustrating. Please keep asking or getting a second opinion, It took a Gp who was diagnosed herself with Endometriosis to take me seriously.

@adenomynightmare Hi, I went back through the thread and saw that you had HRT suspected as the cause of adeno flare up. How did it go with Mirena coil, has adeno pain subsided?

I'm seeing a 2nd gyne after hysteroscopy and laparoscopy I had 2 weeks ago which confirmed adeno (I wasn't told about MRI at all). Gyne who operated said to reduce HRT from 4 pump oestrogel and 100mg oral Utrogestan to 2 pumps and 100mg. I decided to just stop HRT as my priority right now is calming adeno by dropping the level of oestrogel asap. It's been 2 weeks, slightly less adeno pain, but it hasn't gone yet. Would no HRT work I wonder? I don't feel like getting Mirena coil, more messing woth my insides and I've read it had mixed results.

@CinnamonBunz After the mirena I was told not to take utrogestan or the mini pill I had been taking as the mirena would do the job of both. However I still had pain and bleeding (having already reduced from 4 pumps of oestrogel to two). My GP said I could take bridging utrogestan till the mirena kicks in so I've been doing this for 4 months. The bleeding has stopped and the pain is better. So I've gone back up to three pumps of gel which gives me much better control of menopause symptoms (which were awful). So far so good but I plan to reduce the utrogestan in next 6-8 weeks. By 6 months the mirena should be as good as it's going to get. So I'll reduce to 50 utrogestan and then nothing. If that doesn't work I might have to get rid of the mirena and go for utrogestan again. I tolerate it well. It helps me sleep and does seem to control the bleeding. I reckon the four pumps of oestrogel massively flared up my adeno/endo and no one warned me this was a risk. I would have gone much more slowly/taken more progesterone with it if I'd known. Also I've always been on continuous utrogestan. I would give anything you try a couple of months if you can before changing again as otherwise it's hard to one what helps. Good luck!

It's such a hard situation to be in. My life has been on hold for 3 years :(
Let me know re the pessaries x

@adenomynightmare Thanks for sharing your experience with Mirena. I'm still holding up without any HRT, so far I had some overheating in the night wihout the sweats. Adeno is still the main issue, dull pain in the day, the only relief is the cordless electric heatpad. Bladder also seems to be under a lot of pressure, I get up about five times now in the night. As for oestrogel pumps, I was put on 4 pumps and following blood tests Hormone Health clinic insists on I was kept on 4 for the following three years with a switch to continuous Utrogestan after 18 months. Gynae waved me off to come for a check up 'whenever'. Adeno pain only ever started in the last 2 months. I've been to TV scans annually to two different gynaes and neither mentioned a bulky uterus. I wonder how adeno can ramp up so quickly.

@Redandpinkstripess Thanks for responding re Utrogestan pessaries. My assumption is since I'm off HRT now that the new gynae will not suggest adding Utrogestan only to calm adeno.

I've seen like 4 gynaecologists since I was a teenager and none of them will listen. Keep saying I'm too young for xyz. Have the pill or coil. Mini pill hasn't worked and I've read coil makes endo 1000 times worse.
The medication i was given made my bleeding even worse and I was passing clots the size of Mayland cookies. I went back to the GP who said stop and gave me tranexamic acid. It's finally stopped the bleeding for now.
I had a transvaginal scan all they could see was the same small fibroid ive had for years and nothing else. The sonographer said to ask gynaecologist for MRI or CT scan. GP has re- referred me but no idea how long the wait is now.

No one wants to fully investigate. It's so frustrating. I hate being poorly and don't have time for it. I need to work but can't because I'm in too much pain, or bleeding everywhere and PMDD is awful I'm struggling just to function with 2 young children. UC won't help me as I've been out of work for too long.
Apologies for the rant I'm just fed up.

@abbs1 I have a fortune to use private medical insurance when pressed, which it turns out can introduce huge risks if related to more complex gynae conditions such as adenomyosis. Gynaecologysts are jumping on the opportunity to operate coercing you towards hysterectomy before trying any non surgical options.
I have undergone a completely unecessary hysteroscopy with laparoscopy by the 1st gynae to 'diagnose' adeno suspected at TVU scan. I totally didn't feel safe after that. Even findings from the operation were not explained to me or my husband as if we were children. You have to repeatedly ask for lab printouts or pictures of scans like they are a top secret.
I then learnt from 2nd gynae that MRI scan should have been used. 2nd gynae also loves hysterectomy, the complete opposite to the long waiting lists on NHS. It's try Mirena if you wish or hysterectomy followed by 'it's you choice'. Well what choices are those when presented at the 1st appointment before they had a proper look. @Redandpinkstripess I forgot to ask about Utrogestan pessaries as the alternative to Mirena coil, I'm not sure when they choose coil over pessary. Now it's the waiting time to have MRI scan to determine how extensive adeno is, I have to wait some weeks for tissue to heal after laparoscopy.

Abbs 1 rant away that's what we're here for.

That sounds absolutely debilitating and I think so many of us can well understand and appreciate the pain and exhaustion. You said UC isn't helping and I don't want anyone to think I am trying to scam stuff but have you considered possibly applying for PIP. I know it is support for disability but when I was filling in my son's care needs for his form I assumed I did nothing above and beyond normal parenting. What you're describing your in an inability to work, pain and bleeding as as result of medical needs is it worth a try.
I know when I was in pain and clotting and bleeding all I could so was stay in bed and crawl to the bathroom - the suffering is real.

It doesn't help the medical side but surely any financial help might make things manageable.

I didn't know this thread existed, can I jump on board?

I haven't gone through the whole thread, will do later.

My issues are really getting me down.

I have suffered with gynae issues since my 20's (now almost 52).

I have been having yearly appointments with the same gynae department since 2011. Endless hysteroscopies to remove multiple uterine polyps and I always had a thickened uterine lining which caused really heavy bleeding. In 2022 I became very iron deficient so opted for a uterine ablation, this has proven to be the biggest regret of my life.

The ablation has failed and I have been left in agony during each period and pain during ovulation. Gynae just advised to take pain relief but I wasn't happy so requested a pelvic mri.

Turns out I had endometriosis all along which is now considered as 'deep endo' and because of this the ablation has caused the endo to infiltrate my uterine walls causing diffuse adenomyosis. NHS has now left on a waiting list for excision surgery (was put on it last May and could be up to 18-24 months).

The gynae went out of his way to put me off a hysterectomy stating all that could go wrong but I am really upset. I really do not want to live the rest of my life with a damaged uterus and as a 30 year long IBS suffer, since the op I have had no end of problems with my bowels and feel as though my uterus is sitting on my rectal area. I have constant discomfort in my pelvic and bowel area.