I am so hurt / sad / angry / upset y’all.

There’s some things related to my intersex body I’ve recently found out that i havent given myself time or space to process.

You would think during quarantine I would have all the time in the world, but naw; I never stop thinking (about other things), moving, or working until I pass out tired at the end of each night.

Anyways, let’s start with what I thought I once knew about about myself. When I was 18, I discovered I wasn’t like other girls. My medical records read “male pseudo-hermaphrodite 46 XY” & other BS terminology that pathologized my healthy/beautiful intersex body.

I discovered then that I had been diagnosed with partial androgen insensitivity syndrome (PAIS); my XY body couldn’t fully utilize androgens (like T) and so I developed mostly like a typical female person externally.

For me, this meant that I had a somewhat “ambiguous” looking body (aka a non-binary body) and the doctors performed 3 unnecessary cosmetic surgeries to make me look more like a “normal” girl:

gonadectomy
Clitorectomy
vaginoplasty

Not to mention, they lied to me about ALL OF THIS and then forced me to take Premarin (a low dose of estrogen made from extracting the hormone from pregnant mare’s urine )

Anyways, I got in touch with a new endocrinologist recently thanks to my therapist at @RushMedical who suggested I see him.

He did something no other doctor has ever done. He asked me if he could see my medical records, all of them, and then took time to read of them.

He even reached out to other experts in his field when he was confused by something.

Wow. We love humility in medicine.

Anyways, he ends up suspecting something is up and that perhaps my PAIS diagnosis is wrong.

He then orders me a genetic test. Thanks to covid it took almost half a year to get the results, but a month or so ago I got them back.

Turns out, I don’t have PAIS. I actually have something else known as NR-5A1. Now this is big news mostly because 1. It supports my thesis that docs who deal with intersex kids don’t know shit...

And 2. P/AIS intersex folks are believed to not be able to utilize androgens and so we’re often only given estrogen (never T), forcibly “feminized” with fucked up “cosmetic” surgeries, and forcibly assigned female.

Doing what they did to me was fucked up enough, but now realizing that they didn’t even have the diagnosis right—and that I *can* utilize androgens—is fucking infuriating beyond beyond belief.

We need to #EndIntersexSurgery y’all like yesterday.

I’m also upset and sad and feel so robbed because I’ve been to so many “good” doctors since finding out I was intersex in my early twenties; doctors who are queer and work at the lgbtq clinic, and they

1. Never caught this (which granted is a difficult thing to catch)

But 2. And this is what really breaks my heart, they never ever stopped to consider the fact that me having estrogen levels below 30 (which is what post-menopausal cis women typically have) throughout my twenties and early thirties WAS NOT OK OR HEALTHY.

They literally check my hormones went 6 months. And not one single doctor, and Lorde have I seen many, has ever told me I need to up my dose of estrogen.

NO WONDER WHY I’VE HAD OSTEOPENIA SINCE MY MID TWENTIES.

Our bodies need certain levels of either E or T to build healthy bones; and somehow for 15 years no doctor ever connected my post-menopausal E levels with my damn near osteoporosis bone scan results.

Here’s just some of the side effects of having low E

I am SO SICK AND TIRED of not only fighting for my people everyday so future intersex kids don’t go through what I did, but also because I always have to rely on the unpaid labor of my trans & intersex siblings (who aren’t doctors) on top of doing my own research to be healthy.

This is infuriating. Doctors working with intersex kids and young adults are incompetant and owe us reparations.

It’s past time we roll up to their homes, in their quaint suburban gated communities, and let their neighbors know what type of bullshit these “well respected” pediatric urology surgeons and endocrinologists be on.

Intersex people are not here to be your effing experiments.

No justice, no peace.

Please add your name to @IntersexJustice’s #EndIntersexSurgery campaign: https://www.change.org/p/end-intersex-surgery-at-lurie-children-s-hospital

I’m tired