Urinary Tract and Kidney Endometriosis

Hi everyone,

After years of pain and advocating, I finally had my first exploratory lap. last week. The surgery found extensive endometriosis over my uterus, ovaries, bladder, urinary tract (ureters) and biopsy results came back positive for endo on my kidneys as well.

I know that endometriosis of the urinary tract is rare (only about 1% of endo cases)- but wondering if anyone else on here has experience with that?

Dr. said she was unable to remove any of the endo on my ureters or kidneys because it was “too dangerous”, but I have been reading that if left untreated, it could continue to spread and result in my kidneys failing. She is not an endo specialist, so wondering if anyone has had any luck with a specialist removing endo in these areas, or know the likelihood of this causing major kidney problems?

Freakin out a little and would appreciate any advice!