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 🥺

I tried PIP recently as I have PMDD as well which is a registered disability but because I don't "tick the boxes" they rejected my claim. So frustrating as there is no way I can hold down a job. I nearly lost previous jobs due to absence from gynaecologist issues over the years. When I got pregnant I had severe hyperemesis putting me in hospital and the family run company I worked for were so bad I had no choice but to quit. Thankfully I got full MA but my symptoms post 2 children is 1000 times worse than before.

hi all out the blue I have got deep left sided pelvic bone pain and it is really like there’s a knife in there and someone is twisting it.. I am on prostap and Ita due in 2 weeks again… but never had it this bad .. any advice is this even endo related I also have adenomyosis

@safa2 I think you could get further information on Adenomyosis Advice Association Discussion Group on FB. You would need to request to join. Members are mostly UK and US based.

Hello, just joining this thread!

I had an US yesterday for something unrelated, and the sonographer (when pressed!) said it looked like there might be mild adenomyosis. However as I don’t have any symptoms, it wouldn’t be diagnosed as such. She also said is doesn’t affect pregnancy so not to worry.

Looking at the NHS website, it states that it’s possible to have no symptoms. It also seems clear reading around that it can have a significant effect on pregnancy, implantation, risk of miscarriage (including 2nd trimester) and premature birth. What is going on that this was all glossed over?!

I am currently TTC (just finished an IVF egg retrieval and anticipating a transfer later in the year.

I am now trying to piece together what this means and how concerned I should be. I’ve also read a bit about downregulation (aka ‘temporary menopause’) and I feel this is not something I want to do to my body.

Any thoughts or advice much appreciated!

Hi all I am on prostap it’s been 6 months and I had a Mirina coil in which I had removed 2 days ago but today I have loads of fresh red blood .. is this normal ?

@kungfoofighting I'm afraid I can't add anything about IVF, but I also was told a year and a half ago I have mild adenomyosis which showed up on a scan - which wasn't to diagnose this! I am lucky and also have no symptoms so was a bit of an incidental finding. I have two children so the fact I have it hasn't affected my ability to conceive - just to give you a bit of a positive. All the best with your IVF :)

Thank you! :)