Endo all over bowels
Does anyone else have superficial endo all over their bowels and other extrapelvic areas?
My last surgery they just removed what they could from my bladder, pouch of douglas, pelvic walls and ureters but didn’t do anything on my bowels or other organs as they didn’t have any other specialities there as they didn’t anticipate it to be so widespread (nothing had shown on scans as it is superficial).
I’ve been told by 2 very experienced excision surgeons now that my endo is too widespread for surgery to remove it all, as it would be impossible to remove all the lesions safely.
I can still have surgery to manage what they can when what was removed grows back, but I’m starting to feel really deflated. I’m 26 years old and I don’t want another 20ish years of this until I reach menopause (if that even helps).
Has anyone else had this, and if so what treatments have been you found useful? Any experiences/advice are really welcome.