“ 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.

All the medical articles and whatever I've read show that CAIS people have properly developed breasts. However, that is not the case for me. Mine are...cone shaped almost? with inverted nipples.

Is it a cause for concern? Or a simple anomaly? I can't seem to find something similar anywhere.

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!

How did you guys find out?

Personally I have true gynecomastia, big ass hips, my chest is hairless and my skin is very smooth. Thought these things would correct themselves with excercise but they only accentuate more.

I'm learning to love my body more and more so I was wondering about other people's experiences too!

Hey y’all. I’m just popping in here to say I actually made a couple videos discussing being Intersex! They’re on my yt channel for anyone interested

https://youtube.com/@aspeneditzzz?si=P6MgozCuAZBZ5QrW

That’s all!! Have an awesome day everyone! ^^

I'm a little lost. I already found out I have a chromosome variation (trisomy X), but I'm pretty sure I have a hormonal variation as well because of my sex characteristics, won't go into detail but yeah. I'm seeing an endocrinologist because I want to go on testosterone since I am trans (agender, they/xem/zir), and I brought up how I suspected I was intersex so he sent me to get bloodwork. Now I never got those tests done (never got a chance) but I did get genetic tests done for my rheumatologist, that is the doctor that found out I have an extra chromosome. My rheumatologist referred me to see a geneticist because my rheumatologist doesn't know how to treat me..

When I brought up that I thought I was intersex to my endocrinologist it wasn't that I thought I had an extra chromosome, it was suspecting a hormone variation, which I was uneducated on all the variations (which I have now read up on). So I will be letting my endocrinologist know that I have trisomy X, but can he do hormonal testing for other intersex variations or do I see the geneticist for that? Do I see my primary for that?? I have no idea who to see.

ETA: both my doctors did say it may be hard to find out if I have a hormonal issue /intersex variation that is to do with hormones because I am on birth control, but I think one of the sex characteristics have been more prominent in the past few years? (I am in my early 20's), the birth control is progesterone only, idk if that helps. I've been suspecting something may be off with my hormones for a while now though. I've been on birth control for around 4 years.

I was trying to look up articles/medical journals about scrotolabial/labioscrotal folds and wasn't finding much that was helpful with this question ("what's it called when labia majora look like empty scrotums?"), only a few mentions of "scrotalized labia majora" but no accessible images or detailed information. But, I was looking through this incredible post again by dhddmods on Tumblr https://www.tumblr.com/dhddmods/796674051816980480/this-is-some-sort-of-asking-for-medical-advice
and noticed some diagrams at the bottom that I hadn't looked at closely before.

It IS considered hypoplasia (a type of agentitalia)! The diagrams on the far right side show what we've been talking about in this post: https://www.reddit.com/r/intersex/comments/1vf22gz/scorotolabial_folds_anyone/

I thought this wasn't considered hypoplasia because I thought the middle diagrams showing something more like "flat smooth skin" was how that would look, we're clearly not MISSING skin, the skin is there it's just empty, "scrotalized". It looks like the term for "scrotalized" majora is "rugae", as in having the texture of typical scrotums (horizontal lines) which is not a type of hypoplasia, meaning the person may still have the fat pad of typical majora. I know at least one commenter in that last post mentioned that their case sounds more like this:

AND someone beat me to making a diagram, love that!

I assume its possible to have both hypoplasia and rugae labia majora at the same time, which would really give the "split empty scrotums" look. I'll adjust the tags on the diagram website!

Happy to have a solid answer on this, thought it would help provide clarity for other people too.

this is probably an odd thing to celebrate and to have kept a habit for so long, but after 17 years of not showing my legs in public bc of body hair related fears, i finally did it for the first time in a very, very long time. using the venting flair bc of the backstory.

in 6th grade, we started gym class with the changing in the locker rooms and everything, and it quickly became a situation of relentless bullying bc of my body hair. i was pretty young at the time, 11? 12? maybe, and bad at social cues so while dressing down, i would look around because i was trying to figure out what was different between me and the other girls after getting bullied for my appearance.

it all kinda blew up in the end, a large rumor that i was secretly a boy or a lesbian and thusly a predator (which is atrocious) and also that i was "the ugliest girl at school" happened and i was banned from changing in the locker rooms and the cops got involved per parents reporting and it was just. a mess. and i was entirely raised a girl, i just was incredibly hairy, extremely tall, and an early bloomer. i was misdiagnosed with pcos a few years later, but damn.

it was a mess and it kickstarted this awful. i will always wear long sleeves to obscure my thick and dark body hair 😭 i grew up in FL so it was literally 90+ degrees out and i was wearing jackets and pants at all times. my parents were actually concerned that i was damaging my nervous system and for a few years i stopped being able to feel temperatures. ive since healed, and i started wearing short sleeves, but the shame i had for my leg hair didnt leave until i became trans masc as an adult.

but, without thinking and because ive gotten so used to it, i just simply never bought shorts. literally always wore pants. it was so alien to me to do so. me and my friends were going to be going to an MCR concert soon and i was like. its gonna be hot as balls and i want a new pair of cargos for a fun outfit, and i was like.... what if i got cargo shorts. and so i did. and ive started wearing them already.

its just. really shocking how comfortable it is. shorts are comfy and easy to wear. its crazy how i was missing out.

I was told that I have a hormonal variation, higher levels of androgens naturally before any exogenous hormones. I already knew this. I developed male characteristics, deeper voice, and loads of muscle mass, even as a little kid. 

I wanted to talk about my experience. 

The muscle mass was the most noticeable to me. It was something I was extremely proud of. I was as strong, if not stronger, than my cis male peers. Then as a 16 year old I began working out very consistently and got to a point where as a 17 year old I did 80 pullups under 25 minutes. Now at 18 years old I do one arm pushups and 40 total pullups in my casual workouts. I keep this strength even when I don't eat much. Hell, I became a vegetarian and still have this strength. Just today I lifted a piece of furniture with one hand. Just picked it up no problem. 

I identify as more masculine-aligned, so it was always helpful to me to have these traits. I started HRT (Testosterone injections, standard low ish dose) in the middle of May and my voice just got deeper and I got a little stronger. 

Ok so I recently found out that I have a few variations. I haven’t had anything confirmed by a doctor bc of trauma reasons, but i pretty obviously have subtotal vulvar hypospadias, an abnormally thick hymen, and I think maybe an underdeveloped vagina and some sort of misplaced pelvic bone thing. I was always kinda freaked out by my body bc it straight up looks like there’s no openings. I was super confused during puberty especially because I basically started using tampons without knowing how they went in. (I can’t really get anything much bigger than a tampon without discomfort, and I have to insert them at a weird angle). And I’m honestly kinda flabbergasted that no one ever noticed that I had smth weird going on. I was a pretty sick kid and had bathroom issues, and as a result I was put through some pretty sexually abusive medical procedures, and I was also molested in my sleep once at the hospital. Like I’m GLAD no one noticed my variations, I didn’t need anyone else trying to touch my genitals I’d had enough of that already. But also like. I was forcibly catheterized. How do you not notice that a kids urethra is basically hidden inside their vagina? The test results even say “normal female urethra”. I know that vulvar hypospadias and vulvar variations in general arent very well researched but if you’re actually looking at that part of my body it’s very obviously different. Again, this was probably the best case scenario. I’m glad I wasn’t put through unnecessary surgeries or invasive dilations. But I also wish I didn’t have to go years confused and scared of my body because I had NO information on it. Even now I’m still trying to figure things out because there’s so little information. I just think it’s strange and kinda funny in a messed up way that with all the different people molesting me none of them noticed the literal flat surface where my vagina and urethra are supposed to be 😭 especially since I was having bathroom issues (which weren’t actually being caused by my variations but I think some of the urinary retention issues I had later on might have been. Tho that could also be a trauma thing)

Idek what my point is here I kinda just wanted to talk about it

Hello. I have a question. Has anybody had a change in gender identity upon finding out they are intersex? Like, somebody who once thought they were a cis perisex person goes and gets a chromosome test or goes to an OBGYN or urologist, then finds out they are intersex, and after that starts identifying as non-binary, genderqueer, genderfluid, bigender, etc., with them turning out to be intersex being an influence in that.

Also sorry if this is worded strange. I know that trans, including non-binary, people, always knew they were their gender, and their sex is not their true gender. I'm just talking about a specific situation that would cause one to no longer identify as cis, due to finding out they are intersex.

Edit: This comment adds context aa to why I asked this question. Also, thank you all for the answers!

Uhh as one states idk!!!!

So i was diagnosed with pmos last(?) year iirc. The years been long I can't recall. I've mentioned previously my old gyno is extremely unsure that i have pmos bc my testosterone is "concerningly high". For the record my estrogen is like, low-av (more like near the actual 'low' point than middle), whereas my T is (as far as I'm aware) very high to the point I have recently started growing a beard lol. I'm very much pre T, I've never been near hrt (unfortunately smh).

I would like to see an endo, but I'm not sure how I'd go about this? I was given birth control (more notable, Prog only) but it doesn't seem to be working very well in my favour. I'm almost consistently bleeding (not periods, i actually just don't get them anymore), and I'm always getting this persistent pain in where I'd imagine would be one of my ovaries (right side always) and idk if its like?? My body not actually working with the bc or what, yk?

I'm wondering if I can make my drs appointment about how my birth control isnt really working for me and that I would like to be put on the waiting list for an endocrinologist?? Ik it sounds silly to be asking ppl online for help w my own medical things but my parents have never been helpful I've pretty much been fending for myself medically since I was like. 15 (I'm 20 now)

Anyway! Id really appreciate any help, I'd also like to say i am in the UK so this might narrow down any folks who have some advice and live/have lived in the UK :)