It actually isn't totally accurate to say that it comes back after hysterectomy, because usually it isn't fully removed in the first place. Endo grows in a lot of areas other than the ovaries, fallopian tubes and uterus. It frequently grows on the uterosacral ligaments which aren't removed during hysterectomy, and on the rectum, small bowel, bladder, ureters, pelvic/abdominal sidewall, and appendix.

And although less common, it can grow on the kidneys, gallbladder, diaphragm, even into the lungs & onto the sciatic nerve root. Endo can be a full body disease. Unfortunately hysterectomies just keep you from having severe pain during your period, and ovary removal prevents pain during ovulation. But it is still usually left in somewhere else too.

That's why the gold standard for treatment is excision surgery with an endometriosis specialist, where they find all visible growths and remove them. I definitely recommend finding one of these surgeons in the Facebook group Nancy's Nook Endometriosis Education and doing a consultation to see if they think you need exision surgery, if you've never had one 🙂

From what I've learned from my Obgyn, endometriosis can return after having full hysterectomy- due to endo being accidentally missed. A miniscule bit of Endo could've been missed due to scar tissue being in the way etc. With your ovaries being gone are you taking add back hormones? If so that could encourage the Endo to spread.

I dont have my ovaries any more. They left my right one that was completly clear and a year later it was ate up with endo so they removed it.

My gyno says Endo can come back after hysterectomy if you still have your overies. I also have interstitial cystitis of the bladder with pain similar to yours.