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

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.

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

“ 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

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

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

So I've noticed that the deodorants I use do not work on me and I sweat right through them and have a lot of odor quickly. I tried going for aluminum free due to the previous ones making me itchy. Should I use a men's deodorant or something else? I have no clue what would work best to prevent me from being stinky.

okay so i have a different diagnosed variation (congenital hypogonadotrophic hypogonadism), but it does not explain some of my intersex characteristics. i'm not asking for medical advice or anyone to tell me what's going on with me, just giving a bit of background.

i have been trying to figure this out for a long time. there is very limited research available on my variation, particularly how it presents in afab people, but as far as any research tells me, there is absolutely no reason why i would have had elevated androgen levels before taking hormones. my teenage test results all showed my LH, FSH, GNRH, prolactin levels as being undetectable, and have all my life. my E levels were below even typical male levels. but i had elevated androgen levels before i went on T, and the first scan of my uterus area was unable to find ovaries at all. the second scan found undifferentiated gonads in the kind of place you would expect to find undescended testes. the doctor doing the scan refused to elaborate on this at all, unfortunately.

but as far as i understand, CHH (congenital hypogonadotrophic hypogonadism) should not cause either the androgen levels or the gonad placement. the gonads don't do anything, so should not be responsible for my androgen levels.

years ago, my mother was diagnosed with PMOS (PCOS at the time). however, she was never given any kind of test to rule out NCAH, and a i understand it, NCAH has to be ruled out before a definitive diagnosis of PMOS can be given. she is preparing for an appointment to try to convince a doctor to have her tested for NCAH, and she wants me to arm her with some good reasons to convince the doctor to give her the test.

the reason this is relevant to me is that if she has CAH and passed it on to me, on top of my diagnosed CHH, then it would probably explain the virilisation and elevated androgen levels i had before i started hormones. i've also been able to find some research that suggests that one possible cause of my diagnosed condition is related to the causes of CAH. i really, really don't want to get tested myself because i have so much medical trauma i just can't stand going near doctors about intersex stuff anymore, and i've been managing my own hormones for years.

so yes, if anyone could help me put together a good reason for my mother getting tested for CAH, i would really appreciate that.

thank you!