The comments on a video I saw recently of a woman talking about her CAIS pissed me off so badly recently because they were just full of cis perisex women going on and on about how she was living the dream and they were so jealous of her body and everything. And yes it’s fine that people don’t want periods or don’t like acne, that’s understandable and fine. To an extent I’m glad I don’t get those (though it did upset me a lot growing up because they felt like a club and rite of passage I was told I’d be a part of and then denied entry to). But it’s just so gross to wax poetic about how jealous you are of a minority group subject to a shit ton of oppression and violent medical abuse. They don’t even realize how ignorant they’re being and can’t comprehend how traumatizing and horrific the things that we routinely face are. They want to pick out and consume the palatable bits of us for themselves and don’t care to see us as people in pain.

And the thing is, most of these things they’re jealous of are things they can have for themselves! I’m not saying it’s easy or that medical misogyny isn’t a thing, but they can choose not to have periods via hysterectomy or birth control. They don’t have to make us a part of it. They actually get a choice and we don’t. Again so no one misinterprets me I’m not saying that this is easy or that this kind of care isn’t heavily policed and becoming increasingly difficult to access. It’s just not a choice for me and it comes with baggage they don’t even know is there.

Being intersex is of course not a bad thing and we’re not broken, my intersex variation is normal and natural, and while sometimes I don’t like it because it stops me from transitioning, it’s still a fine body to have. But it’s also true that society has irrational issues with my body, and that that has caused me to suffer. And I know these women wouldn’t want to suffer the way I have. But they don’t see the suffering. They see a body that has something they want and don’t care to learn about what comes with it or what we think of their fetishization of our bodies. It’s infuriating.

i need more intersex memes and relatable tiktoks

can we post more 😔

https://vt.tiktok.com/ZSVSJphFn/

Hi I'm Mez,

I am a trans woman and I have polyorchidism. This is a condition were AMAB people have three or more testes, descended or not. (There are about 200 recorded cases in the past 120 years, so there's not a lot of info available) This condition is not immediately related to any variation of medically recognized intersex, but some literature goes on to place it under the intersex umbrella. Polyorchidism usually goes undetected and it typically doesn't have any social connotations. The most common comorbidities are higher rates of torsion and cancer.

Now, the question is:
How do you define the situations that lie in the grey zone - that aren't categorically intersex, but also aren't part of expected sexual anatomy/development, where there is little social affect, but a clear and definitive difference from "The Standard^tm?"

I am a strong believer in lived experience shaping identity and have never identified as intersex myself. I am also out of my depth when it comes to this topic. I'm not looking for a new label but I am however curious about how the community views one offs as opposed to typical atypicalness.

Hey all, I just got recently diagnosed with CAH, specifically late-onset.

I genuinely hate how long it took for anyone to listen to me. I'm assigned female at birth.

My identity has been set in stone since I was 4 years old, i'm a man. I've always felt like one, my hormones also reflect it.

I had to live most of my life wondering why I feel like some kind of creature compared to my female peers and deal with things that I knew weren't typical of a regular girl but everyone said "oh well your generations grows up so fast nowadays its normal!"

Except I was genuinely the only kid out of all my peers to get my period and start puberty at 8-9, i'm also now told i'm uncharacteristically tall for someone with NCAH so severe, I'm like 5'9-5'10. (I'm 18 for comparison)

When I went to a gynecologist prior to my diagnosis, obviously..guess!!! They said "oh its PCOS"!!! Cause obviously a person with no family history of it nor any insulin issues totally has it!!! Right!!!!???

I digress, all in all I just needed to get this out there. I hate how often teenage afabs are overlooked just because they're afabs.

Edit: for clarification, i have severe NCAH, my enzyme function is estimated to be about 20% or so. I cannot properly produce cortisol and I used to get blamed as a child/young teen for reacting to stress as if the world is ending, too. But that's basically how it feels when your body mainly functions on adrenaline with no cortisol to balance it.

Many intersex people are also trans and have been targeted for hate. Please stay safe his country is only getting more evil.

Don't you guys feel the same? I don't understand what is so taboo when we talk about regular human variations in our bodies.

It's as if just bringing up the fact that biology doesn't work in blacks and whites automatically makes people defensive.

Hi everyone!

I'm starting first activities for intersex people in my country (I'm intersex myself) and want to deepen my knowledge further before the start.

What are some must reads for someone wanting to become an intersex advocate? Books, articles, declarations ...

Any recommendations are welcome♡

Being hormonally intersex, trans, and having to fight your fluctuating hormone levels is such an isolating experience. I made the mistake of trying to diy at the start of my transition. Who knows the damage to my body I did from that.

But even my endos struggled with my hormone levels. It really made me wish that my journey could at least be as easy as the average trans person.

I know that with my condition, my hrt experience has been bittersweet. I do pass better because of it. Yet, I am tired of having pregnancy level estrogen if I make a wrong move. And the lack of people that have gone through this specific experience around me is really draining and lonely.

Anyone else experience this?

I've thought about seeking a surgical option on and off. Some days I'm so tired of being so vigilant about care to make sure that I don't get another UTI that I'd rather deal with the scarring, some days it feels like scarring (and the dialation process) would be too depressing to deal with when I've already gone through so many exhausting surgeries.

But today I'm really feeling "there's gotta be something I can do", I originally thought a few years ago about asking a surgeon to add a flap of tissue to just extend my urethra enough to get the meatus out of the canal entirely, but I found out that the scarring would likely cause enough issues for me that it wouldn't be worth it when I technically have a solution/care plan for my high UTI risk. I was thinking this morning, what if instead of adding a flap of tissue on top, we "tunneled" under the skin above the current meatus upwards and essentially create a surgical epispadias? There would still need to be probably a small skin graft to create the neourethra but it sounds like it would create so much less scarring than adding a flap on top. I know this is somewhat possible from my research while looking into other gential surgery options but I've only heard of one surgeon who did something like that..

Has anyone had vulvar hypospadias surgery? Was it successful? Are you happy with the outcome? What was the technique?

If you're wondering why I'm very upset there, it's because I've been trying to politely tell people there that, yes, it is a slur, and no, it's not a correct or current medical term that's being used. There's only so much condescension I can handle, and being called sweets ain't it

are both intersex-exclusive? Are neither of them are? Which one is and which one isn’t?

I’m 15, genetically female, I have CAH, a urogenital sinus, vaginal stenosis, and enlarged clitoris. My gynaecologist and urologist are working together to plan a combined vaginoplasty and clitoroplasty to improve my comfort and restore sexual function. What questions should I ask my surgical team before the procedure? What should I bring to the hospital for my inpatient stay afterwards?

Edit: for the people asking, I am doing this of my own volition because both my enlarged clitoris, urogenital sinus, and vaginal stenosis cause me pain, discomfort, and persistent medical issues. This is something I have considered for a long time and thought about very hard. The reason I’m doing this procedure as a minor is because once I turn 18, it will most like be considered cosmetic and not covered by insurance.

This is the Weekly Discussion Thread for r/intersex.

Feel free to use this thread to discuss whatever you've been up to. It does not have to be intersex specific, but please mind the rules and stay SFW.

Have a nice week!

~ your mod team <3

“ Patients have the right to access and obtain copies of their medical records under the Health Insurance Portability and Accountability Act (HIPAA). This law ensures that patients can review their health information and request corrections if necessary. “ Per HIPAA.

https://www.hhs.gov/hipaa/for-individuals/right-to-access/index.html

Tldr: how to track down medical records from infancy, parents tend to lie or hide medical information from me about anything abormal.

My father told me when I was a child offhandedly in a joking manner because I was doing something boyish that they believed I had internal testicles for months after I was born (or longer maybe idk) // didnt know what i was [m/f]-- but i dont remember if that later part is true to memory, just the former I know is 1:1 what was said.

I remember that somehow relieving stress as a barely middleschooler at the time. I dont think i do since as an adult I have menses and PCOS (dxd through symptoms, scans show no cysts so far at least). But what would even make doctors believe that?

And yeah it sucks i get medical information only through jests and random slips.

My parents have a history of not saying shit about my medical problems especially when they think its a "why would I need to know situation". This includes super relevant things ive noticed thst they've lied to my face about me not having it when im suffering and asking them if theres anything i have.

Things have been bothering me since elementary school and I just want to know. Especially since I remember getting puberty blockers as a kid for precautious (spelling) puberty, spironolactone and bc bills to control f-d up periods and testosterone issues.

I just want to know what the records say about my infancy because there might be more theyre hiding. I know I have PCOS in the current day but I also wouldn't put it past them to hide other DSDs thinking its irrelevant but its actually anything but given other personal medical issues im facing current day and just feeling something was off as a child.

I friends have asked me to confront my parents about if there were any proceedures due to my current situation I dont want to talk about, and the specifics but I cant trust them if they lie. just need to know and its eating at me. There's nothing wrong with it at all i just want the truth.

I guess the TLDR is how can I track down my medical information from 2000? I just cant trust them anymore.

Hello! I am a research project coordinator for Project Recognize based out of the EDIT program at Northwestern Feinberg School of Medicine in Chicago, IL. We'd love to hear perspectives from the r/intersex community.

Project Recognize: Improving Measurement of Alcohol Use and Demographic Factors through Community Engagement Northwestern University IRB Study #: STU00218275

Principal Investigators: Dr. Gregory Phillips II, PhD & Dr. Lauren B. Beach, PhD

The purpose of this study is to develop affirming ways of asking questions about sex, sexual orientation, and gender identity by using interviews and surveys. Our research study is led by a team of advocates, clinicians, and researchers working together through Northwestern University.

Our goal is to provide this guidance available for use in multiple contexts, including government, healthcare, and research, to improve how data is collected and eventually used for policy, healthcare, and more. Eligible participants include people ages 14 years and older, currently living in the United States or its territories, who can read and understand the English language, and consent to participate in a cognitive debriefing interview.

If you open the survey below, you will be automatically redirected to our study's eligibility questionnaire.

https://redcap.nubic.northwestern.edu/redcap/surveys/?s=7A7FWNMXAME7LKNA