I'm apparently an Intersex anomaly.

Howdy there, my name's Zano. I'm intersex with a condition known as ovotestis (that's when your gonads are half male half female), and since at least my 30th birthday I've been undergoing a second puberty. I was born with a relatively normal looking male body, but aside from a random testicular torsion, nothing weird happened until about age 27. It turns out at that time, I started getting breast buds and now am at roughly a Tanner 2/5 complete with the gynecomastia diagnosis.

Endometriosis runs on mom's side of the family all the way up the tree and across all of the branches. The fellas who have kids seem to end up with daughters who have it, and the gals have it basically by default. In mom's case she lost over 100lbs and was anemic within 8 months of my birth, until one day when the bleeding started and just wouldn't stop until they removed both ovaries. As I've struggled through my all natural gender transition powered almost entirely by my gonads and Klinefelter's (a chromosomal intersex condition resulting in a sex karyotype of XXY), we've watched my blood serum estrogen level go up, my blood resemble chronic gout symptoms (purely blood uric acid level, no other symptoms confusingly), and my ALT enzyme ping-pong between a perfectly healthy score and 10 points over the healthy range in as little as a week. Early on when I started bleeding out of my rectum, I assumed IBS, a fissure, anything but where I'm at now.

I had to track bloody movements, I was having dramatic bloody bowel episodes with increasing frequency, and in Summer of 2022 I went to the ER and quite literally had someone get in there with a finger (professionally) and tell me they didn't see any signs or evidence of bleeding. We ran my blood panels less than 30 minutes after the episode, and my CBC wasn't just normal, it was perfectly fine. This eventually resulted in me getting a Colonoscopy and a follow-up in-office Anoscopy which ruled out fissures, cancer, and the other reasonable normal causes of rectal bleeding.

I'd been getting gelatinous red ribbons in my movements, sometimes to my displeasure seeing them on my bloody wipes. I have bleeds that'll just trickle out of me and cause swelling such that I can't move stool but literally trickle blood by the ounce. We've run tests for markers of Chron's and cancer and everything else, and I keep revisiting Endometriosis. Mom and I finally talked about her family history of it, and since then a lot more has made sense.

Now I have a new, weird problem. Like someone with PCOS I accumulate lining on a monthly schedule but sometimes miss sheds, and have heavier than normal bleeds afterwards. This month has been miserable, and every weekend or so I've broken out into a full body inflammatory episode that results in a fever. I've had 'period flu' before after some of these bleeding episodes, on schedule quite often with a 28 day clock, and a lot of the symptoms respond to NSAID's which is my go-to to try to make things easier on myself. That said, this doesn't change the visible spider-vein like deposits in my legs that are completely numb and full of the same gelatin-like shed that comes out of my butt! Oh and the decaying material every month makes my groin smell hideous, creating a strangely resiliant oily film that runs down both thighs every month which you guessed it smells of rotting blood.

I also get pimples that when busted eject entire blood clots, blood blisters I have to drain with a pin-prick, then gently tease clots out of, and monthly I'll have at least one episode where after urinating I get this incredibly painful tugging sensation at the back of my bladder. As a penis-haver, I run into skepticism constantly, and I'm due this week to show-down with my insurance provider over the gynecology consult my primary has recommended (since the gastroenterologist has literally quit on me, saying its not in his skillset to treat).

Even reading posts on sites like this, I ask myself constantly how in the heck are normal women supposed to do this, let alone myself?
I also wonder if anyone else has had inflammatory response triggered fevers as a result of barometric changes (I've only tonight found out these fevers have happened on nights where the pressure has dropped very suddenly the last three weeks)?

I did a very brief search and didn't find any hits for Intersex Endometriosis self-reporting here (nor on Reddit is it really a thing), and I'm told the medical literature on penis-havers with Endo is about 20 cases, so it's hard not to feel intimidated. Any insight or advice would be greatly appreciated, thank you for reading.