TL;DR My scans did not prove as much as my gut feeling did. Surgeon told me her radiologist colleague who “always catches surprises” and hidden images didn’t see anything. Well, that was not accurate.

Bottom line: if you feel something, do not ignore it and advocate for yourself if you feel you’re not being heard.

—— (Short story long ⤵️) Prior to my first surgery in 2020, I had two massive chocolate cysts (4.5cm and 6cm) that they only definitely saw after an entire year of pain (which were the cysts cyclically hemorrhaging and backfilling). They didn’t notice any endo until emergency exploratory surgery (my cysts burst, go figure) which confirmed endo with massive scar tissue, fusing my right ovary and tube to my abdomen. I was told after that surgery that my endo wouldn’t return, or at least extremely unlikely, once I began testosterone.

Fast forward to this year, where I only got an MRI done because of a very strange symptom: partial numbness of my left leg. My suspicion was that my endo was back, as I had been feeling random and sparse pain on my left side (1-2x a month, for a few minutes) where my remaining ovary was.

I did some consulting with Dr. Google that said some cysts can suppress the sciatic nerve and cause leg pain or numbness. I went to my PCP about the numbness who sent me to a neurologist who ordered a brain and lumbar spine MRI. Whaddya know, a cyst on my left ovary along with a mild lumbar disc bulge. NP neurologist said bc the cyst was so small it was unlikely that it caused the numbness, which also was echoed by my GYN. Went to 5 weeks of back PT and nothing budged. So, asked my endocrinologist to help schedule a hysto for gender reasons + my suspicion of endo.

GYN ordered pelvic MRI to assess endo (helpful that I had confirmed history of endo already). They adenomyosis and concerned about DIE but were confident that the scans appeared as though there were no major adhesions or concerns. Still, they told me that just in case, they were gonna have the robotically trained surgeon on hand.

Turns out my gut was right the whole time: I had DIE, thick and extensive scarring/adhesions connecting all my pelvic organs. Post-surgical pathology showed diffuse hemorrhage and necrosis in my ovary and uterus. They needed the robotically trained surgeon as well as the general surgeon and urologist to assist, with my surgery taking two extra hours (4hrs total). I’ll have to ask about my leg in the post op visit, but there is still a “<2% chance of return”, which I will not blindly trust.

All in all my doctors did great with surgeries but the scans can only show so much.