Need advice. Adenomyosis

Hi everyone,

I am new here and struggling with pain right now. I had excision for endometriosis 5 weeks ago and a lot of the pain I had, is still there. I was diagnosed with adenomyosis just before my surgery but there was nothing that could be done since I'm still TTC.

I've completely changed my diet to an anti-inflammatory diet and I think it is helping a bit but I'm still dependent on pain meds (I'm getting by with Tramadol since diet change).

Anyone have advice or the same struggle with adenomyosis? I'm almost ready to call it quits and have them remove my uterus

10 Replies

  • Actually I was diagnosed with severe adenomyosis in 2001 and had a hysterectomy. Not sure how severe your symptoms are but prior to my hysterectomy, my doctor did scraped my uterus but it didn't help. If you're having severe pain and excessive bleeding, which was my case, removal of the uterus may be the answer. Best of luck to you.

  • A hysterectomy so cure adeno but not endometriosis you are still recovering I wouldn't rush your body into surgery again so soon. Join Nancy's Nook closed Facebook group you'll learn a lot there abs get very good educated advice

  • Thanks ladies!

    I wanted to give it a year for conceiving but not sure how much more I can take. The surgeon said my Adeno is actually mild but it's so uncomfortable. I don't have heavy bleeding but what I would consider a normal menstrual flow. It's just the pain and fatigue that's getting to me! I recently had three failed IVF cycles with perfect embryos :( 2 of which I miscarried. I had a feeling something was wrong with my uterus.

    @notalone--did the hysterectomy bring you relief? What all did you have taken out? Did you also have Endo?

    I'm gonna get on Nancy's nook. Thank you Pepper. I'm knowledgable about Endo, it's the Adeno I'm trying to figure out now.

  • Hi Evil-Adeno,

    You have my sympathy with this. I had adenomyosis as well as severe endometriosis and two egg donation attempts but didn't have a hysterectomy. There are a couple of possibilities that you may not have tried and may like to explore. This page which we produced to inform people about the current situation regarding adenomyosis may help you decide what to do and what to questions to ask.

    Let us know how you get on and good luck

  • Thank you Judy! Great article. If you don't mind me asking, did you get any relief with the Adeno and Endo you have?

  • Glad its useful especially as I researched and wrote it !

  • Unfortunately not because pelvic nerve damage due adhesions and trauma resulting from the endometriosis.

  • It's a devastating disease! I'm sorry you haven't had relief, which is usually the case :(

    This is the most informative article I've read. Thank you for taking the time to write it ! I'm sure it brings understanding and peace to many women.

    My IVF nurse and Dr had a hard time accepting I have adenomyosis and said I could have fibroids. I read from your article how easily they are confused. Would fibroids enlarge my uterus? My surgeon is Dr Cynthia Mosbrocker and she is highly skilled. She noticed on ultrasound my enlarged uterus and a thickening of lining. She also confirmed during surgery. If it were fibroids would it be seen? She looked inside my uterus and it was clean. I don't doubt her expertise at all actually. I'd just like to hear your opinion.

    I knew something was wrong with my uterus after multiple MCs and failed IVF treatments. Drs keep telling me it doesn't cause infertility but I know for certain it does. I've had every other test under the sun.

  • I've also had a presacral neurectomy, which didn't help at all.

  • Hi, I do not know if you have had your children or what your age is. It is only five weeks since your operation so you may have to wait a few months for the hormones etc to adjust. Try to be positive. If you still are suffering a hysterectomy may be what you decide on to improve your quality of life. Let us know how you are getting on. Good Luck.

You may also like...