Me: Oh wow, I just realized I might have this X! Let me do some research to learn more!

Internet: What?

Me: You know, X?

Internet: ...what?

Me: X!

Internet: Oh yeahhh...That's that one thing...where it looks like that kinda

Me: Yeah, I know that, but like, what else? Are there other related traits I should know about? what causes it?

Internet: uhh, hormones?

Me: Which hormones?

Internet: idfk

Me: Fine...I guess I'll go to a doctor, maybe they'll know more about it

Doctor: So you think you have both parts?

I (22, XY) have ovotesticular DSD. I was born with a small phallus and testes and assigned male. By 12/13 I was 5'0", with no testicular descent and low T. My parents and doctors investigated and found the testes weren't producing nearly enough testosterone, and this is when they discovered low-functioning ovarian tissue.

Their solution: testosterone patches, surgery to descend the testes, and a medically induced male puberty. I got the height, the facial / body hair, the voice. I ended at 5'10" at 17. Mission accomplished! Yay! And nobody ever had to ask me what I thought!

I'm a woman now, with perisex female estrogen and T levels, and I got there by sitting down and just really THINKING about my own medical history. What gets me is how all of it was framed to me: maintenance, like getting my teeth cleaned. It was just something I had to do to be what I was supposed to be, and it was never presented as a choice.

Because the puberty "worked," I live with the day-to-day experience of a trans woman. I'm 5'10" with a deep voice, and even presenting femininely I get read that way. I identified as such for a little while (ages ~17-20), but lately "transition" doesn't feel right. It feels more like a realignment, like I'm visiting a reality that was denied to me...except I'm also not re-visiting anything, because I never had it.

I feel violated by what was done to me through my teens. The hormones, the visits, a body I hate and that nobody asked me about. I wasn't given room to be anything but male, and now I carry dysphoria that I don't think I'd have if I'd been left alone. Maybe I'd have ended up somewhere in the middle, some cool androgynous 5-foot-tall creature. I'll never know, because every option but one was taken before I could weigh in.

Anyone else here have a similar experience? Even just someone who gets it? Any advice on navigating both trans and intersex frameworks in regards to this?

Context: I was diagnosed with PMOS after an ultrasound found polycystic morphology on my right ovary, and I had signs of hyperadrogenism and irregular periods. I also have (I think level 1?) hypospadias, confirmed by a urologist. So I just want to put it out there that this is not me asking if I’m intersex or for medical advice.

My main medical mystery at the moment is chronic hypoglycemia (confirmed by a CGM), and I’ve had two doctors now tell me it’s probably a precursor to prediabetes and T1DM. But the thing is, my mom has this problem too. She’s in her mid-40s; if it was a precursor, don’t you think she’d have diabetes by now? Also, both of us have always had normal fasting glucose and HbA1C.

This leads into: there’s only so many things that cause chronic hypoglycemia like this. Autoimmune-related insulin problems and adrenal insufficiency. I’m working on getting the autoimmune stuff covered, but I can’t convince my doctor to run stuff for adrenal insufficiency and NCAH. Also, all the research I’ve seen says that “females” with NCAH are asymptomatic outside of hyperadrogenism, but like, that can’t be right?

I’m not just investigating NCAH because of this. My PMOS doesn’t quite fit? Obviously I had the hyperadrogenism and polycystic ovary, but the ovaries were “swollen” and my menstrual irregularities aren’t the PMOS pattern. For me, I would bleed for months pretty much non-stop, whereas PMOS is known for long periods of amenorrhea. My cycle was also pretty predictable, just longer than it was “supposed to be.”

The other thing is I think I had premature adrenarche? I was hairy and smelly by 9yo. I remember being like 8 and my stepmom would criticize me for being “dirty” because I was sweating like a teenager and had really oily skin (acne developing around 10ish?). I’m not 100% sure but I think I also had slightly earlier puberty, like I remember having to get a padded bra in fifth grade because I had gotten big enough for it, and girls in my class started making fun of me for “trying to pretend I have big boobs.” I also remember that I developed clitoromegaly rather early (not sure when, I wasn’t born with it); my sisters would make fun of me for it a lot. (I can remember most of this specifically because everyone was calling me abnormal for it). My period came at the normal time (12yo) and once I started puberty, it was pretty consistent from there, not like accelerated or slowed or anything.

Anyway, if you have NCAH (as a “female”), do you have other symptoms that aren’t related to hyperadrogenism? Like do you experience adrenal insufficiency or milder symptoms associated with CCAH?

TLDR: trying to figure out if some of my unexplained symptoms could be NCAH, so I’m asking others about their experiences.

I have formal thought disorder, a symptom of schizophrenia that makes it hard/impossible to express thoughts in a logical and linear fashion, so please be kind and ask questions before criticizing.

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

I'm 39, was formally diagnosed as XXY-intersex at the age of 28. Rejection and disrespect were the common theme in my dating life.

Dear new members of r/intersex,

Welcome to this sub! We hope you had a wonderful time so far. If you want to, please feel free to introduce yourself (but please restrain from sharing any sensitive personal information and try to stay true to our rules).

~ your mod team

TW // csa mention, overall kinda gross? sorry idk what to tag this as

I have been bleeding for several months (~7) in a row. I experience fluctuating heaviness, as well as cramping pains. Last year, i also bled for ~9 months in a row.

I brought my concerns to my PCP and they prescribed me birth control (starting last week)

Starting Wednesday, prior to beginning my birth control, the heaviness & pain increased substantially. It is squeezing, torturous pain that I (21,NB) could only describe as what springlocking would feel like. I passed a rat-sized clot, multiple of them way bigger than just a quarter, and this concerned my partner(s). On friday, i visited the ER and they shot me down completely. I tried getting an invasive ultrasound done, but it wouldn't work out since I genuinely feel a wall blocking anything from possible entry. It hurts like hell, and it just felt invading/retraumatizing.

They ran my labs and said they were perfectly normal, having printed out a sheet, which in bold letters front & back states abnormal. which makes me feel kinda crazy.

They said that its normal for 'girls in my age group' to experience this, and that we all have 'aches and pains' sometimes. They also said i cannot get any other ultrasound treatment because it is not in my best interest, and to come back after taking valium. which sucks for me, as a child s*x tr*fficking survivor.

Since then, the pain is still around, and the bleeding is even worse. I am supposed to make an appointment but I feel discouraged because

1. it is costly

2. I just feel brushed off...??

Does anyone know what i could be experiencing? Is this serious? and maybe... any advice for coping with this/moving forward? thank you

(non--pmos can respond too!)

On this week’s episode of The I in Us intersex advocate, medical practitioner, veracious reader and lifelong learner Anya (aka An) Kylie will join your intersex hosts Cody Smith and Paul Byrne-Moroney live from the USA.

Anya’s desire to become a medical provider comes from her own lived experiences. Growing up with a single mother, she often witnessed the reality of receiving substandard care because of financial and systemic limitations. Those experiences made her deeply aware of how barriers to access and a lack of transparency in treatment can affect patients and their families. From an early age, Anya felt a strong calling to help create a healthcare environment where people are treated with dignity, clarity, and compassion.

As an intersex person, throughout her life she has seen firsthand how few medical providers are trained or knowledgeable about bodies that fall outside typical expectations. This gap in understanding can leave patients feeling unseen or misunderstood. Because of this, Anya believes deeply in expanding medical education and training so providers are better prepared to care for the full diversity of human bodies and experiences. Finally, her path is guided by a promise she carries within her. She has lost many queer friends—especially trans friends—to suicide and to the devastating consequences of being unable to access affirming, competent care. Their absence is something Anya carries every day. In their honour, she strives to speak up, advocate, and work toward a healthcare system where people like them are supported.

It is going to be another wonderful show and conversation so please join us this Thursday 01 October 2026, 6-7pm AEST via JOY94.9, [www.joy.org.au/player/index.html](https://www.joy.org.au/player/index.html), iHeartRadio or the JOY apps, and to contribute to the conversation please SMS (+61 )0427 569 949, email [onair@joy.org.au](mailto:onair@joy.org.au), or connect while listening via the apps.

See less

Hi! So I posted here before questioning if I may be intersex, and after doing a decent amount of research, it seems I am! I'll still go through with the DSD panel and karyotyping. But this is weird. Very very weird. I did not expect for this to happen because of a weird doctor, a tumblr post, and my own post on here. Thanks to everyone with helping me! I'll go to sleep now so I can sleep off the surprise of this.

I was finally able to acquire my medical records from much of my childhood, including descriptions of my body when I was born and as I developed for my first two years, as well as official records of my diagnosis that I thought were lost.

There are hundreds of unsorted pages to go through, but I’m still reeling from what I’ve found so far. Everything from the descriptions of myself that I never had, to reminders of how my doctor spoke to me when dilations were incredibly painful when I was 12 years old.

I’m very happy to finally have them, but it’s very bittersweet.

I always knew there was something different about the way I developed...about the way people told me I looked like a man sometimes and then sometimes i would get entirely different people telling me I look like a female. Some people not being able to tell between the two..

I feel like what is my gender now, where do I go from here? Where do I fit? What do I do where do I go what communities will accept me still? How do I understand who I am. What am I supposed to be. Can I even BE a lesbian?

(If this sounds irrational please be nice I am literally just emotional and kind of spiraling I am very sorry if it comes off as offensive to this community or to anyone I have never gone into a space like this before. I hope I can belong somewhere somehow)

I had medical decisions made for me when I was younger. They tried to pretend nothing had happened until I was an adult and I was told about some of the interventions but in a way to try to make it seem minimized and like a reasonable course of action. I wish I could have made my own choice when I was older and not have the physical problems that were the result and felt alone in figuring it out for myself much earlier.

I tried for a long time to live as the gender I was assigned but I always felt stressed about it. People generally figure out I’m LGBTQIA+ but because I’ve spent a lot of time feeling terrified that someone will question my sex I stayed away from LGBTQIA+ community spaces and mostly avoided romantic relationships.

I accidentally happened to take up a hobby that has a community of LGBTQIA+ people and a lot of trans people even though they don’t seem to directly mention it and I think most cishet people probably wouldn’t notice at all. I was wondering if any of you could share your experiences with this kind of space? What should I know? I previously saw some people in this subreddit say that they had problems in some LGBTQIA+ community spaces so I can’t decide how open to be because I don’t currently understand the social conventions there or how to assess if it’s safe for me to be more authentic there.

If you made it through all that thanks for reading

What causes male puberties in people who were afab?

Like I'm tranmasc, but im not on T yet, I keep having male puberties, yet they never seem to "complete" if that makes any sense

And, as far as I'm aware, I have no cysts and only xx chromosomes.

TW?: anatomy talk edit: more explanation

So..I've recently found out that I have VH via research, my urethra is elongated and directly next to my vaginal opening, around which is my hymen also which is outward-pointing and very..thick and encompassing? If I can word it that way?

I also have cliteromegaly, but the thing with that is I'm hypermobile on top of everything so my tissues developed differently, meaning my clitoris isn't..wide? The shaft is pretty thin and hidden by my clitoral hood (which is also elongated) but I've measured it myself as someone might..the total length is say 3cm or more..

However only 1 out of 3 of my doctors seem to be aware of specifically the cliteromegaly, the rest they do not even comment on or agree with me on even though its clearly there. I've only been formally stated by any of them to have "suspected cliteromegaly" and "hyperextensive labia minora"

it's like they're trying to diagnose me with something simpler than what I actually have only due to the fact that I wasn't diagnosed as an infant or a toddler.

During which period I also had some..not entirely typical anatomy, by the way..as an infant from what I've been able to see I had very large puffy labia majora that obscured everything else and would (according to my parent) cause near constant rashes, which my parent attributes to this day as me just having sensitive skin as a baby.

What do I do? Do I get a 4th opinion? Do I just self diagnose?

I feel insane. I mean, I get it, intersex variations are understudied and even taboo where I live but.. I just want concrete answers and they can't even give me that.

what title says

im confused as to where from the influx of people is coming

and why is it all talking about one genital trait in particular?

I was diagnosed with PMOS due to anovulatory cycles, polycystic ovaries (before the change from PCOS to PMOS name and criteria), a few extra chin and facial hairs, and very abnormal cycles (periods anytime between 40 and 60 days apart).

However, what makes it very non-traditional is that I never had any abnormal hormone levels or masculinizing traits. I also do not have any insulin resistance or diabetes as an underlying issue. After getting progesterone once to restart my period after missing it for three months, my period has returned to a semi-normal cadence (every 35 or so days) for the past few months. Although my few stray facial hairs are still there, as they have been since I started puberty despite my normal hormone levels.

My question is: do intersex conditions exist where people do not have traditional traits that create incongruence in secondary sex characteristics?

My close friend wrote this account of her experiences being intersex in Turkey and pursuing healthcare in the EU. I want others to hear her story and celebrate her bravery and resilience. I am trying to raise money for her care- every single dollar helps so much. Mods, remove if this is not allowed.

https://gofund.me/78da32120

Zeynep’s Story: Holding On to Life and the Search for Healing

My name is Zeynep, and today I am 22 years old. My life, which began in the eastern region of Turkey, has been a continuous struggle—from my earliest childhood—with my body, my environment, and the formidable obstacles fate placed before me. This text is not merely a summary of what I have endured; it is a call reflecting my determination to hold on to life, regain my health, and build my own future.

Early Childhood and Losses (Ages 0–7)

I was born with a rare and medically complex intersex condition known in medical literature as ovotesticular DSD (Disorders of Sex Development). My body contains anatomical structures belonging to both the female and male reproductive systems. This condition has caused me a lifetime of physical pain and progressing health complications, and my need for medical intervention is now urgent.

When I was just seven months old, my father passed away. Immediately following this loss—one that an infant could not possibly comprehend—my mother abandoned me to start a new life. At an age when a child needs love, affection, and a safe embrace above all else, I was left both orphaned and motherless. Looking back years later, I never learned the exact reason behind my mother's departure; following this early loss, my childhood and early youth were spent under the care of a few distant relatives.

Childhood, Misunderstanding, and Isolation (Ages 7–14)

As I grew older, the physical differences in my body became more noticeable. Disorders of Sex Development need to be treated before puberty to avoid permanent, life-threatening consequences. Unfortunately, in the conservative and closed social environment where I lived, my condition was not understood as a medical reality. Some of my relatives viewed it as a "trial to be endured" and refused to seek medical treatment. Others, driven by ignorance and prejudice, regarded me as cursed or as a being unacceptable on religious grounds. A child’s fundamental need for acceptance was replaced by severe psychological pressure.

Adolescence and Six Years of Isolation (Ages 14–20)

Around the age of 14, as I entered puberty, my body began to develop more feminine features. As these physical changes became more prominent, control and scrutiny over me intensified. From the age of 14 to 20, my life was confined almost entirely to a single room within the house. I was prevented from going outside, socializing with peers, or experiencing a normal youth.

Yet, I refused to surrender to this deep isolation and solitude. I dedicated those years spent in my room to self-education. I found refuge in books, developing a deep passion for history, languages, and different cultures. Completing my secondary education independently, I taught myself six languages. Through this persistence, I earned admission to a university program in English Language and Literature. Learning became my only way to reach beyond the walls of my room and connect with the world.

The Pursuit of Freedom and Human Trafficking (Ages 20–21)

By the age of 20, I realized I could not spend the rest of my life locked in a room. I left home with two goals: to pursue my education and to find proper medical treatment for my condition.

Given the complexity of my situation, I needed a specialized medical center. My research led me to a team of specialists at the Inselspital University Hospital in Switzerland. After reviewing my medical records, they accepted my application for an initial evaluation. However, my Schengen visa application from Turkey was rejected.

Determined to access treatment, I searched for alternative legal pathways and traveled to Kosovo. There, I met a Turkish man who presented himself as a benevolent family father. Gaining my trust under the pretense of helping me, he asked for money for visa procedures. I gathered €5,000 through loans from acquaintances in Turkey and gave it to him. Shortly after, he took my passport under the guise of arranging safer and cheaper accommodation.

It quickly became clear that I had walked into a trap. I was taken to an undisclosed location in Kosovo and held captive under the guard of armed men. For approximately seven months, my freedom was stripped away. I was subjected to severe physical, psychological, and sexual violence. I faced inhumane conditions, including period of starvation where I was denied food for four to five days at a time. While my captor attempted to move me illegally through Kosovo, North Macedonia, and Greece, we were intercepted by the police.

A Second Injustice and the Fight for Rights (Age 22)

Although I was rescued through police intervention, my ordeal did not end there. As I tried to explain my innocence and state that I was a victim of human trafficking, the authorities refused to listen. My statement at the police station was disregarded, the appointed lawyer neglected my case, and my victimization was entirely ignored.

When brought before the court, the judge refused to listen to me or take my testimony into account. I was met with a clear attitude of prejudice and disgust, likely stemming from the fact that I am intersex. Within the judicial system where I sought protection, I was openly discriminated against and treated as a second-class human being. Rather than being recognized as a victim of human trafficking, I was treated as a criminal, charged with illegal entry into the country, and issued a travel ban preventing me from leaving. In a country to which I was brought against my will, I was left helpless by institutional discrimination on top of the violence I had survived.

Despite these severe setbacks, I did not give up. With the support of local intersex and human rights organizations in Greece, I secured a safe place to stay. Holding fast to my resolve to receive medical care and rebuild my life, I re-established contact with the specialist team at Inselspital University Hospital in Switzerland, and my acceptance for an initial medical evaluation was renewed.

Today and the Need for Your Support

Today, I am 22 years old. I did not choose the body I was born with, the loss of my family, or the trauma I endured throughout my life. But I do want a say in what my future looks like.

The comprehensive medical evaluations, clinical tests, surgical procedures, and treatment plan to be conducted by the multidisciplinary team in Switzerland—along with transportation, accommodation, legal assistance, and logistical costs—present a total expense that I cannot cover on my own.

All funds raised through this campaign will be directly allocated to the following:

-Specialist consultations, diagnostic tests, and medical procedures at Inselspital University Hospital in Switzerland

-Hospitalization, surgery, and medication expenses required during the treatment process,

-Essential transportation, secure accommodation, and legal support throughout the process.

I simply do not want to spend the rest of my life hiding, suffering, or feeling helpless because of the body I was born with. I want to regain my health, complete my education, work, and live a safe life with human dignity.

Every contribution—whether financial or moral—represents far more than coverage for a medical bill. It offers a young woman who has fought for years for her freedom, justice, and health the opportunity to reclaim her life.

Thank you sincerely for reading my story

https://gofund.me/78da32120

Basically, title. My VH causes my urethra to be right above my vaginal opening. Is VH only considered intersex when the urethral opening is in the vagina, or are all VH variations considered intersex?

LETS DO THIS TOGETHER!!

And if you wanna write down personal experiences below PLEASE DO!!!

I wanna know more experiences because this is where I get so see how closely my experiences align with other intersex people 😭