I'm having a hysterectomy next month they are removing one ovary, uterus, fallopian tubes and cervix. Also extensive excision. I'm stage 4 DIE with adenomyosis and endo on my bladder and bowel. As I was diagnosed at the higher level we are hitting it hard so it doesn't penetrate my organs then Visanne or other drug to keep down my estrogen until menopause. I'm terrified too! But after researching it's the right thing for me as fatigue is my biggest issue not pain, the sheer amount of endo is destroying my day to day life. Also my body is very damaged by the scars left by endo and I have a higher rate of getting certain cancers if they leave my cervix. I hope this helps. Hang in there xxxx

Does anyone else have pain that lingers all month or just about? Not horrible like during your period but not pain free either?

I had a hysterectomy at 32. They left the ovaries. They did the hysterectomy after excision a few months prior. Now I have only ovaries and I am spotting and have horrible pain again. I am going back to the dr. Tomorrow to figure out what next. I know taking the ovaries is not what they want to do but this is unreal. Have the hysterectomy was the best thing I ever did but this last year things have taken a turn. It happened slowly but the last two months have progressed much faster and it is unbearable. I would want to know their plan for after the hysterectomy if you choose to do it. I had the endo in the lining of the uterus which is why they did it. If I was on the pill after or some medicine maybe it would not have come back. I don't know. Good luck. It is a hard decision.

That's the thing I love about this site- knowing there are others out there that truly get it. Stay well :)

I've heard a lot of stories of it coming back but there are some women who say they still wouldn't have done it differently and others who wish they didn't do it. Having excision surgery seems to be the best bet to avoid removing your uterus completely. If it's very bad some doctors just can't handle that type of surgery so they suggest hysterectomy, but there are doctors out there who can do more extensive surgery where the endo has spread to other organs. Maybe try getting a second opinion from a doctor from the List on Nancy's Nook page on Facebook. They have assembled a list of recommended surgeons who do excision surgery. Worth a shot.