Diagnoses help

Hi again, I have just had a letter from my consultant about my lap last week...it says my uterus was hyperaemic consistent with adenomysis, with active endo in both ovarian fossa and thickening of the uterosacral ligament, stage 3 Endometrisis, could some body put that in English for me, And what should my plan be from here? Will I ever be able to be pain free? Also on my bladder refilling had mild petechial haemorrhages? I know one of you wonderful people will be able to explain it to me xx

10 Replies

  • Hi adenomyosis is where endo grows within the muscle wall of the uterus. Uterosacral ligaments support the uterus. Ovarian fossa is what catches the eggs I think. If you are with a general gynaecologist then I would suggest getting a referral to a specialist endo centre via GP. Have a look on the BSGE website for one near you. You definitely need to have the endo excised, as this will give you a much better chance of being pain free with regards to the endo. Unfortunately the only cure for adenomyosis is hysterectomy but I think there are treatments you can try like nerve blocks to reduce pain. The bladder thing I can't help with unfortunately. I've recently had hysterectomy (due to adenomyosis) along with excision of stage 4endo. So if you have any questions just let me know. I wish you all the luck in the world Hun. 

  • Thank you so much, it's all a bit much at the moment trying to understand it all. Suffered for 15 yrs so glad to get some answers. I will ask my gp to see a specialist, he's not great though just given me pain killers for last 15 yrs since first being diagnosed with endo. He will only give me Dihydrocodeine that does not touch the pain. I had to pay private for the latest lap, it's all such a battle. Once again thank you xx

  • Hi Hun GP cannot refuse . If they do get them to put it in writing why they won't. Also ask for appointment to see practice manager. These things sometimes help to get referral. If this fails then search on here for a lady called Lindle. She is great and will be able to help . I do know what you're going through, I suffered with symptoms for 30 years before someone finally took me seriously. Just wish I knew then what I know now. Having endo and adenomyosis is an emotional roller coaster so just take each day as it comes. I'm here if you need me. Sending hugs.

  • Awww thank you, unless you live this I don't think people can understand the pain you go through xx

  • Hi hun just been doing some research and the petechial haemorrhage looks like it means you may have ic institial cystitis.( painful bladder syndrome) . Causes you to need to go a lot but not completely empty and pain like a uti etc. Hope this helps. 

  • Yes that's what I found on the Internet makes sense is I have constantly got water infections or that type pain and never done a urine sample without high White blood count... Will I ever be pain free lol xx

  • I know what you mean. I'm starting to suspect I have ic as it seems to be getting worse .

  • I did ask the Dr if this was possible he basically said no......

  • Hi - the ovarian fossa is the depression in the pelvic side wall where the ovary sits. It is lined with peritoneum (the thin membrane that lines the abdominal cavity). The most common form of endo is called 'peritoneal' so this means you have endo on the peritonuem there. IC is sometimes found with endo as it is thought to be autoimmune and endo is autoimmune-related but they are different conditions.

    Stage 3 endo with uterosacral ligament involvement must be dealt with in a specialist endo centre so click on my name and have a look at my post on the treatment pathway and the one on how to find a specialist centre. 

  • Thank you so much, having a look now xx

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