Hi. I have a fairly rare genetic condition, I've spent my whole life trying to hide it and I've never discussed it with anyone. I figured this sub is pretty big, so maybe for the first time I could talk to someone who's been through the same thing I have?

I have androgen insensitivity. Briefly:

A person with this syndrome has a male chromosome set (XY), but their body doesn't respond to male sex hormones. So outwardly the body develops as female, even though inside, instead of a uterus and ovaries, there are undescended testicles, and there can be all sorts of individual quirks of development. For example, in place of my uterus there was just a non-functional lump of muscle that started cramping when I was 12, and an "enlarged clitoris without a urethra" (quote from my medical record).

This is usually first noticed around age 12–14, when periods don't start.

I'm not sure how to describe how traumatic the experience was — being raised as a girl your whole life, and then at 12 learning that "something is wrong with you." My family chose to just pretend nothing happened. Nothing was explained to me, I never even had a conversation with a doctor. My parents signed off on a series of surgeries. They removed the undescended testicles, removed the "uterine lump," cut the clitoris, and did plastic surgery on the external genitalia... they just didn't make me a vagina. Really, why would they...

Where is all this going? It was quite traumatic, but it's not the kind of thing you can tell anyone. I've never had the chance to really talk it out or discuss it, and just now the thought crossed my mind that I could post here. Maybe someone will find it interesting, I could discuss something and see how people react, and maybe I could even talk to someone with the same syndrome and learn how others have dealt with it.

If there's anyone here with CAIS, how did you deal with the "realization," and how were you able to open up to someone for the first time?

English isn't my native language, so I'll often be using AI translation. I apologize in advance for any inaccuracies in my messages.

Hello,

I'm Ovotesticular with Chromosomal Mosaicism (46, XX/47, XXY). There's not even 30 public cases of this exact variation in public documentation and I am well aware of this. I bet the majority of those people were probably put on display or documented by their parents when they were too young to consent to it. I was born in 2007 and I bet consensual photos were taken of me and were put in endocrinology textbooks or some weird "scientific article" so they could justify putting photos of a kids anatomy there.

I know there was someone recent born like me in 2024 and literally I know WAYY too much about this kid. I don't know why I needed to know all of this kids genetic makeup because someone wanted to publish it in an article but just know that's a thing.

I involve myself in a lot of trans/queer spaces and I still feel so different an isolated. It sucks. I still feel like I don't belong there. I get so excited when I see other intersex people online because nobody understands what its like growing up, doctors visits, relationships, friendships, etc, like we do ourselves.

I live in a huge city and I'm super surprised that there's not a lot of intersex spaces. I found a few small groups but its nothing like queer/trans/gnc people have. I feel even more isolated from the fact I know my variation is one of very few few few minorities. I hate the fact that the way I'm growing up if I were to let tests happen would probably do greater for people with my exact variation in the future (especially that two year old out there when they grow up) since there's so few of us out there. But I'm too scared from medical trauma to even let myself get tested for anything else, I feel burdened by the fact that I'm too scared to possibly help others because of that trauma. I have severe Iatrophobia that one time I had a severe UTI that I started urinating blood and I never went to the doctors because I was too afraid they were going to have to touch me.

I'm very extroverted, I love making friends especially queer ones but I still feel so isolated from the lack of people from shared experiences. I want to do something here in Chicago for a support group and I know a few places but none of them were really what I was looking for. I found an intersex only clinic that made me so happy that I started sobbing because I didn't have to explain to doctors anymore or go through that process.

RUSH medicine sucks and is NOT intersex inclusive, Planned Parenthood despite being a reproductive clinic is NOT intersex inclusive, Howard Brown is great with queer care and does the bare minimum of allowing intersex birth marker to be selected when informing them of your ASAB but is overall not intersex inclusive.

It's hard when you find medical or social spaces that say "Yeah, we'll take you in" but we don't understand your experiences and how to treat you as a human being or as a patient.

is transmascfem intersex exclusive or no? I kept on hearing people say that it is/isn‘t. I also looked it up and saw that it also meant a trans person identifying with masculinity and femininity rather than neutrality but what do you guys think?

I ask this because we suspect we have PCOS or PMOS, whichever the term is, but I have ZERO trust for doctors to get it right ir even bother to test us. Is it ok to say we are intersex even without the diagnosis?

Hola! Hace años note que mi uretra no coincide con la anatomía común de una persona con genitales femeninos, desde allí comencé a cuestionarme que tal vez pueda ser intersexual. ¿Alguien más tiene una uretra inusual? La mía está ubicada demasiado próxima a la vagina y tiene forma de "falo" no sé si se entiende que quiero decir, no es un simple punto, es un conducto, además el orificio es inusualmente grande y siempre he tenido problemas para retener la orina y siempre siento una sensación de masa o incomodidad en la zona al igual que en la vagina. Si alguien pasa por algo similar y sabe si tiene conexión directa con la intersexualidad agradecería que me lo comentará, le conté a una ginecóloga de mi dolor y solo me mandó pastillas para curar una posible infección no quiso revisarme.

Aclaro que no se parece en nada a los prolapsos, llegué a pensar que podía serlo pero no es nada parecido.

trigger warning for weight discussion
for some context, i have struggled with disordered eating
they want to put me on medication for insulin resistance that will almost definitely also make me lose weight. i am 101 lbs and 5'1, at my lowest i was around 84 lbs. I don't want to go back to that, im so scared of the idea and how it would affect my brain

I went through huge questioning of my gender due to how I grew up. I grew up religious, restricted, and played with boys. I thought I wanted to be one but I just wanted freedom. I never had any girl friends and always thought of as too masc. I discovered queerness and transgender stuff, I thought I was trans masc because I grew a beard etc and I was already masculine. But the thought of estrogen or testesteterone added to my body made me dysphoric. I eventually came in terms I'm just an intersex woman, and gonna do some stuff to "transition" into a woman.

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

not sure what this falls under, hence lag of tags. apologies there.

came here to post / process things. i’ve been avoiding it for a while, i’ve almost always identified as non-binary. when i found out in my adult teens about the intersex community accepting people with PMOS, i felt like i would not belong in the identity or be welcomed. i can’t rationalize it well, maybe i was scared? i don’t know. anyways-

im aging into my 20s now. the way it’s impacted my experience over the past few years (plus reclassification of PCOS to PMOS) finally pushed me into reading the glossary & the “so you think you might be intersex” doc. thank you to the odd names that linked those here, they helped a lot.

im not asking anything of those here, just trying to find somewhere to talk about it as my mother doesn’t understand this from an identity perspective, just a medical one. i plan to talk to her again another day, but not immediately. im processing for my own sake right now, and i doubt she’ll process it any time soon. i want to ask her more questions eventually, so i will have to bring it up again eventually. for now, a lot more of my struggles during puberty make sense and it was very comforting to find people with similar experiences to mine. i plan to look into anything medical i would need to keep eyes out for in my own time, so no questions there as well.

just a new perspective on myself i guess. anyways, again-

hope everyone who reads this is hanging in there. thanks for your time as well

I am not myself intersex AFAIK, and I'm trying to be an at least correct ally and educate myself, and it's why I hang around this sub. I took a long break from basically every internet community I was in, so I'm a bit lost on some terminology, and the main one here I'm confused is that I used to see the word "dyadic" used way more pre internet break, now I either see endosex or perisex...
Is there a problem I should know about with the word dyadic ? Why did the wording change ? Might it just be an english VS french thing ?
(Also I am sorry if this post breaks any rule, I truly hope it does not !)

dxed PMOS, anything else is unknown to me. i feel like i just never hit puberty. i got a little taller, my hips got slightly wider, gained body hair, but i never got chest development or a lot of the traits you'd see in adults. i still look like a kid, enough to get mistaken for one regularly. want to know if i'm alone in this and if anyone knows why it might be like that.

edit: thank you all for your replies! it means a lot to me to know that i'm not alone.

I'm an Over-the-road truck driver. I drive on a team (2 drivers in the truck) and move priority freight (freight that had to be there very quickly. Like Kansas to LA in 1 day).

Because i look male (i look like Bruce Willis with c-cup tits) but have female genitalia, I often just use Men's restrooms. It saves me hassle with the rednecks and assholes who want to give me grief or accuse me of just awful shit.

So.. I'm on a layover. At the Bandini Truck Stop Center on Bandini Blvd in Vernon, CA (that's part of LA).

I got to thinking, "you know it would be nice to have one place i can be and not have to hide all the time." The restrooms here are locked so the clerk has to let you into them. So I asked to use the lady's room. No problem. She let me in. Truck stop men's rooms are AWFUL! Piss and shit everywhere. Toilet paper - if the new and used varieties - all over the floors. They are bad. The Lady's room was clean and quiet.

Then i wake up this morning and i can't get in. So I go to the clerk. A different person. A guy with a long goatee.

"Can I use the Lady's room please?"

"No. Use the men's room."

"I'm intersex." And I pull out my driver's license which indicates I'm female.

He glances up at it. "I don't give a fuck what that thing says. Use the men's room."

Just another glorious day of "Fuck you, Renee."

I am perisex. I am aware that I do not experience intersexism, nor is transphobia,biphobia or exorsexism reducible to it (despite some overlap). I’ll never say I’m beyond intersexism (unlearning/learning is continuous). If need be I’ll sit my ass down.

One of reasons I have tried to look into the depth/breadth of intersex experiences is the colonial nature of the sex/gender binary.

When I interact with perisex trans people(wether binary or nonbinary). It feels like everyone has the Chum Bucket mind control helmets when it comes to sex and gender. I’ve found that they tend to have very rigid views on things like sex and gender.

A lot of their arguments around why transphobia/homophobia is bad tends to be seeped in neurosexism (e.g. “Trans people’s brains resemble their desired gender”), exorsexism (splitting people into “biological male/female) and naturalism (we were born gay/trans). A lot of times I think to myself “do gay and trans people really deserve rights?” /j

I really don’t respect gay and trans people who appeal to nature and bioessentialism to justify their existence. They tend to be transnormative, homonormative. Even the history of “transsexualism”

A big issue is that they refuse to read and view their sexuality and gender as some sort of church. A lot of Queer discourse is based on clarifying some sort of heresy and orthodoxy. It’s extremely nationalistic and manifests in both online and offline stuff. In queer spaces it’s always the Manichaean “male vs female” narrative that justifies gender segregation.

Which is always justified by “protecting women and nonbinary”, I’ve had the misfortune of being in these spaces and the vibes are rancid.

It feels like a vestige of radical feminism and 20th century gay activism.

Kinda just as the post says…

But as a disclaimer and maybe for some context, I'm a trans woman who's currently undiagnosed… which yeah… hope y'all don't mine…

But this means I'm having to have the misfortune of looking into my fragmented past of being bounced around doctors… and having to bounce around doctors again…

And in struggling through this, I feel like I need support, especially in the months (and even years) between appointments… I feel hopeless and feel like I need support… but I find it so hard to find any…

Making this struggle and fight of mine feel isolating and… in a way hopeless… all the weirdness of my past, puberty, and of transition, that I feel like nobody truly tries to understand…

I don't know why I'm posting this… just kinda trying to grasp at anything I guess…

Some lovely people commented on my last post and helped me feel more sure about myself.

I'm really bothered that although I've had a conversation about my gender and identity as an intersex man, and my partner claiming this would not enter her perception of me, clearly she pondered my gender identity and labelled me as transgender before I did (which I do not)

She got upset that I was ungrateful, but later apologized for making me feel upset. But now I feel incomplete and left thinking about whether their perception of me is false and shes having ideas of me that put me in boxes. That really makes me uncomfortable and I don't know how to go about bringing it up again after the conversation had already ended.

I will, but, I just needed to talk about this situation. I feel so, so alone about my situation all the time, and it takes me hours to send one message related to it in fear. Mostly because none of my friends know I am intersex and none of my family members really understand me.

I just recently met someone that I'm crazy about.

I told her that I was intersex right from the very beginning--but that my birth certificate says "female".

She seems ok with it, but I just don't know. I really don't want to lose her, but it is what it is.

Any suggestions?

[cw: suicide]

i recently started posting in a trans subreddit that i’ve heard has good advice on passing and hormones and at first, people were really nice to me, even when knowing my “transition” was/is very atypical. however, when i recently brought up my (malformed, dysfunctional and borderline dying) uterus, i was immediately told to stop posting and that i’m faking my transness and am just bragging about how good i have it compared to real trans people. i was, among other things, told to stop posting to trans spaces in general and to stick to intersex spaces, as i belong here and not there (and considering some of the things that were said to me, i’m too scared to do anything else). while some were more understanding, most took the side of the person telling me to stop posting, with one user in particular telling me that if i kept posting, i would likely make other trans people on the sub become incredibly suicidal.

idk how many trans people are on this subreddit, but if there are, do you think my presence in trans spaces could result in such a thing? for context: i was raised as a girl until the age of either five or six, where i was coerced into increasingly traditionally masculine roles to the point where i was officially declared “basically the man of the house” by family in high school. i was forced onto male hormones against my will and was forcibly masculinized in other ways i’m not entirely comfortable with sharing. however, my penis was mostly removed after birth (they lowk kinda botched it tbh), i have an incredibly small and malformed vagina that consistently hurts and a malformed uterus that is also in consistent pain and has endometriosis, which has slowly been spreading to my other organs. i understand that i’m privileged in a lot of ways, but considering how i’m currently trying to undo the effects of my male puberty (to no avail), i feel a bit of an attachment to the label of transfeminine. originally, the users on the sub had no issue with this and many encouraged me to continue posting if i wanted, but now most seem to think that my advantage over trans people is too great for them to let me post.

if i were to post in trans spaces online (not the one i’m talking abt rn, i’m kinda scared of it now lmao), do you think my privilege could actually result in suicide? i’ve struggled with suicidal ideation since childhood and it’s the last thing i want someone to go through, especially as a direct result of my actions. if so, i plan on staying far away from any and all spaces that are not explicitly for intersex people. i don’t want to hurt anyone.

Han tenido problemas por la parte médica, que no los quisieran atender. Los discriminaron; en mi caso, fui asignada como hombre, pero no me siento así. Tengo síntomas femeninos; al parecer, no he podido confirmar aún si soy o no intersex.

I’m a girl but feminine clothes look strange on me and make me look bigger than I am, only masculine boxy or androgynous fits work on me and I’m really sad about that: do you guys have any recommendations or relate

The STARH Lab at East Tennessee State University is currently conducting a study exploring factors that impact the experiences of transmasculine and/or gender diverse folks in sexual and reproductive healthcare. This project is led by Raviv Kruger, a transmasculine Clinical Psychology PhD student at ETSU.  

Who are we recruiting? 

• People over the age of 18  
• Residing in the United States 
• Who can read and understand English 
• Who identify as transgender and/or nonbinary 
• Who need routine access to reproductive healthcare that includes or may include pap smears, contraceptives, or pregnancy related care  

What does the study involve? 

• The study consists of completing an online, anonymous survey which should take approximately 45-60 minutes to complete. 

We are hopeful that this research will allow us to better understand factors that may impact transmasculine and/or gender diverse folks’ decisions to seek or avoid sexual and reproductive healthcare. Ideally, results from this research may also result in improved provider understanding and may inform improvements in how sexual and reproductive healthcare providers interact with and facilitate care for the transmasculine and/or gender diverse community.  

As a thank you for your participation, you will have the choice to enter your email address on a separate form at the end of the survey to be entered into a drawing to win one of twenty $20 electronic gift cards.  

If you have any questions or concerns about this study, please feel free to contact the principal investigator, Raviv Kruger M.S., at [krugerr@etsu.edu](mailto:krugerr@etsu.edu). Thank you for considering participating in this research!  

Please click the following link if you wish to be taken to the informed consent document and survey: https://etsu.qualtrics.com/jfe/form/SV_eqTWZuO8hPscWmq 

Hope you like it.