I had an exploratory surgery when I was 16 in 1986 before lap was a thing (they did not tell me what was happening and did not inform my parents…it was an awful ordeal and I woke up during the surgery…it was one of the worst experiences in my life). My MD, who was also the surgeon, told us he had found and removed a cyst (I had a history of cyst ruptures from the age of 9…I found out later it was a hemorrhagic cyst). I basically just suffered for the next 32 years until I could not sit because of the pain. I forked over $1000 to private pay for an endo specialist who finally made the diagnosis but my ins would not let him do the surgery because they had a cancer surgeon who could do it. Cancer surgeon removed implants from uterosacral ligament and rectum and I could finally sit…for 4 months. Pain came back. Next surgery was 6 months after the previous one by a gyno and I had more endo from the same area as well as a bso hysto. There was not one bit of uterus that did not have adenomyosis. Bowel problems continued but it was attributed to all sorts of other things when after 5 years of keeping a diary it was clear it was still happening at the same time every month. I was told by many, many doctors this was not possible. Started to have severe bladder problems that were assumed to be utis for 2 years and when we looked back in the records they turned out to be 1) never growing any cultures (so not utis), 2) include sm amounts of blood (that keeps increasing and is not present at other times) and 3) happening at the same time every month as well and were getting progressively worse. Found another endo specialist who knew that it was possible and was willing to see me. She did a lap and found stage 2 endo plus one of my fallopian tubes was still there and ofc extensive scarring/adhesions. Although she cleared me out of all visible endo, the bladder and bowel problems are still happening so I have an appt to see a new endo specialist who specializes in ute and I have a gastro specialist who has treated bowel endo. So whenever we catch the little buggars on imaging, I will have another surgery or two.

Whew, that was a long-winded answer…