Deep Infiltrating Endo trapped in scar tissue?

Background:

I (47f) have PCOS and had a uterine septum that was surgically removed 25 years ago. At the time I had an endometrioma as well that the doctor said we were would just watch. A dx of celiac disease helped with a lot of my symptoms once I stopped eating gluten so I wasn’t incentivized to push for a diagnosis.

Fast forward to my mid forties and after some intense pelvic pain, my doctor ordered a pelvic u/s and they noticed some changes to the cyst I’d had for two decades. We watched it for some time and it continued to grow and change so we moved forward with a removal of the ovary and tubes since the doctor worried it was ovarian cancer.

When he got in there, he said I hve stage 4 endometriosis and that the ovary was basically consumed by the endometriosis and that there was not much ovarian tissue left. He ablated a lot of the endo from my abdomen wall. I have hepatic endometriosis (on my liver) my bowel is sitting under my uterus. My uterus, bladder, bowel, and left ovary are adhered together. When I woke up I knew something was wrong. The pain in my stomach about two inches to the left of my belly button was excruciating. For context, I have an insanely high pain threshold. I told the nurse to tell my doctor my pain was an 8. He’s known me for years. He was alarmed enough at me reporting pain at an 8 that he had them admit me.

I felt like there was a hole in my stomach that my insides were going to fall out of.

The assumption has been that it was nerve damage from the surgery. We injected cortisone into the spot. I’ve been told by a surgeon that with time the nerve will heal. The surgery was in December of 2023. I still have pain that’s bad enough that I can’t wear jeans or have anything touch the spot on my stomach.

I asked ChatGPT today if it’s possible that some of the endo got trapped in the spot where it was burned off when it healed. The reason I suspected this is because when i ovulate or menstruate my liver aches because of the endo on it. I’ve noticed that the spot on my stomach also hurts the most when ovulating or menstruating. ChatGPT told me I likely have Deep Infiltrating Endometriosis since I have stage 4 and it had basically destroyed my ovary.

So now what? Do I see a specialist? Can they even do anything about it? I have a good enough quality of life. I’ve had to learn to adapt and not have things touch my stomach. I am able to dissociate when the pain is really bad. I fear that surgery could mess me up even worse.

But I also fear that not diagnosing could lead to worse issues in the future. Has anyone dealt with this? I’m in the SF Bay Area. Can anyone recommend a specialist that may be able to help me with options and at least help me not feel crazy?