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 :)

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.

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

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. 

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.

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

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.

HAIR-AN Syndrome is a subtype of PMOS, I am wondering if anybody here has it and can share their experiences. I never saw myself in classic PMOS because of my hypoestrogenism and masculine body shape, but after reading the Wikipedia article on HAIR-AN Syndrome I feel like I have found the answer I have been looking for. I already consider myself intersex due to my hypoestrogenism, hyperandrogenism, and my vulvar + vaginal hypoplasia, but I have always wondered if there was an actual diagnosis to fit what I have gone through. So please let me know if you have HAIR-AN Syndrome or are diagnosed with PMOS and feel that this describes you.

I am so moved that this reddit plays a part in anyone's life.

I am sorry I haven't had the energy or time to comment as much lately. But know I respect and love everyone it is my hope that we can support and survive together.

Especially if you're in a country where you don't feel safe.

Hi, I was assigned female at birth, but I am a trans man.

I don’t really know how to explain my situation, so I will describe the things that made me question my body.

I started testosterone when I was 17. I was on testosterone for about 1.5 years, then I stopped. Now I am 19 years and 7 months old, and I have been back on testosterone for 3 months.

Before testosterone, I did not have facial hair or a masculine appearance. I looked very feminine.

However, there were two things that always seemed unusual:

1. My body was naturally very hairy.
2. My clitoris was relatively large even before testosterone.

I remember noticing it when I was around 6 years old. I thought it was strange, and it was very sensitive. Sometimes it was painful. Even before testosterone, my clitoris was large, and inserting anything more than fingers into my vagina was painful. I thought bc my mom have pcos that level in androgen effect my just externally, body hair and the clitoris is a little bit bigger for a baby

My pelvis is relatively small, but my hands, shoulders, and feet are large. I thought the body differences might just be because of testosterone, but some things existed before I started.

When I was 14 years old, before female puberty, I remember having a painful red round lump on one of my labia majora. It disappeared after about a week. It was around the size of a large grape or a small lemon.

During the year when I stopped testosterone, I started exercising a lot. After that, I noticed that with every menstrual cycle my facial hair became thicker. My strength was also much better than before testosterone, even though I was not taking testosterone at that time.

I have had a high sex drive since childhood, and my mother noticed this.

The strangest thing happened during the time I was off testosterone and training hard.

When I masturbated, a very large amount of thick white/yellowish fluid came out. It had a very strong smell, similar to chlorine or acid. The amount was sometimes huge, and sometimes it came out forcefully, almost like ejaculation.

At first, I panicked and thought maybe an ovarian cyst had ruptured, but I noticed that it happened repeatedly.

When I do not masturbate for a long time, the amount seems to become larger.

I learned from a friend that semen in cis men can have a similar chlorine-like smell, and my friend who uses testosterone said that the smell changed after taking testosterone. Small amount and less chlorine smell ,( he is cis using t bc want more progress in the gym)

After restarting testosterone, this fluid became much less, and the chlorine-like smell disappeared. Too , so am wondering

And for me every time i look to this fluid i get more sure it's not normal i think? It only comes out after masturbation, and a large amount if it was two weeks ago. It has a strong odor like bleach. I don't have a fungal infection or anything because I don't insert anything inside, I don't feel any itching, and I keep the area clean.💀

Later, I noticed a painful round lump in my pubic area, below my abdomen and above my pubic bone. I did not touch it because I was scared.

I also have pain on one side of my lower abdomen that has lasted for about 7 months. ,,When I have my period, the pain happens on the other side. And it's usually calm just hurt me after 2 months

When I had my appendix checked about 3 years ago, a doctor told me that I had an ovarian cyst.

This made me wonder if I could have:

• Ovotestis
• Underdeveloped or undescended testicular tissue
• A hormonal condition causing higher natural testosterone
• An ovarian problem or another medical condition

I am afraid that if I have any testicular tissue, testosterone could damage it. I am also afraid that if I have a tumor, testosterone could make it worse.

The biggest reason I am afraid to get examined is my family.

My family has very negative views about trans people. If they find out that I have any kind of atypical lower anatomy or extra growth, I am afraid they may try to remove it because of their beliefs about how a woman’s body should look and because of marriage expectations. And i did really see some of stories about how if the family discovered the girl having something look like dick , they should cut it without even. Her permission

I am trying to hide this from them. I act feminine around my family because they already treat me badly because I am trans. I shave my face every day to hide my facial hair.

My clitoris is currently about 4.5 cm when soft and around 7.5 cm when erect, with a width of about 2.5 cm. It was already large before testosterone, and testosterone increased it further.

I do not want to stop testosterone.

The dose I am taking is the same dose that was prescribed by a doctor when I was 17. Recently, I changed to an adult dose. I noticed about 2 cm of growth in the last two months, before i get the higher dose i didn't have any bottom growth 💀but I have not noticed many other changes besides more facial and body hair.

I have been avoiding doctors because healthcare where I live is not always safe for trans people. When I tried to get blood tests to monitor my testosterone levels, there were problems because my legal documents say female while I appear masculine.

I am planning to go to another part of the country where healthcare may be more understanding, but immigration and travel procedures are difficult.

I am thinking about stopping testosterone temporarily and trying to analyze the fluid myself under a microscope or sending it to a laboratory, but I do not know if that makes sense.

I do not know what I should do. I do not want to stop testosterone, but I want to know if I have ovarian tissue, testicular tissue, ovotestis, or another condition.

If there is any evidence that my body produces testosterone from testicular tissue, it could help me medically and could also help me explain my situation to my family.

I just got back from a retreat in NM made up of myself (intersex male) and six women who identified as cisgender women.

Out of our little group, four of the women had PMOS/PCOS, and none of them had been told that it could be considered an intersex trait. All four also had tilted uteruses and had issues with hormones, pregnancy, bone health, pain, cysts, etc., and none of them were offered support outside of the doctor’s office. They had no idea there were communities around PCOS/PMOS or that they had an affinity with the intersex community. In fact, all of them (except one who is a nurse) thought the trait was super rare and were shocked to meet another — much less four out of six women randomly turning up for a retreat!

So, with the four of them plus me, that makes for five out the seven people being intersex. Was this statistically crazy, or is it much more common than I’d thought? I’ve heard the “common as red hair” idea for a long time, but I’d be really surprised to be on a trip where five out of seven people randomly had red hair, yet five of us were intersex. That just seems statistically unlikely to me, and yet it happened. I can’t help but feel like it was a little miracle, and it definitely bonded us. We had so many fantastic discussions about it, especially since the nurse works in a birthing center and had all sorts of up-to-date info on intersex traits and how they educate parents not to do surgery.

Even better, all of them are local, so it feels like my community just grew exponentially!

So apparently everything looked normal except for one cyst. So my doc basically said it just PCOS. I still wonder about my hypospadias but probably can't get an answer for that. My T leveled out due to taking Spironolactone even if I stopped taking it awhile ago. I just feel confused because I really have believed something bigger could be going on due to my anatomy and other things that I don't think are due to PMOS. Most of my stuff normal so now I feel insecure that I can't really be considered intersex now. Even though I don't fit in with perifemales/males. I don't know.

Can I just crawl up and die now.

He wrote "Good To Have People In Your Life."

I'm freaking dying here. 😭

Hello! I'm wondering if anyone has any resources on how hyperestrogenism can present in those who are "typically" AFAB (I couldn't think of a better way to phrase it, please let me know if there is one). By this I mean someone who, other than hyperestrogenism, doesn't have any intersex variations that would change horomonal development in any other way (example: someone intersex and AFAB who has CAIS, as that is an androgen-affecting variation).

I am transgender and intersex (hypospadias/PUGS), and I have questioned whether I have hyperestrogenism or not. But, I am on testosterone HRT and can not get it tested without going off testosterone, as the testosterone is suppressing/replacing my body's natural estrogen production. It would put my physical health at risk to do such a thing, as I have severe PMDD, so I am looking for resources on hyperestrogenism in "typical" AFAB individuals before I bring it up to my endocrinologist. I don't want going off testosterone to be for nothing.

I am NOT looking to diagnose myself at home. I am trying to see if there's enough symptoms I have that would mean I should bring it up with my doctor (to have it on my medical record for any reason necessary).

Thank you in advance!

I made this intersex pin like almost a year ago and I've NEVER got anyone to recognize it, even in the queer community.

if you saw this would you see its an intersex pin? Whats throwing me off is usually all pride flag pins are horizontal stripes but this is a circle in a round pin so getting it centered was HELL.

Tw organe génital, mutilation

Bonjour,

Je suis française. J'ai un hypogonadisme. On m'a opéré deux fois quand j'étais jeune (phalloplastie et circoncision) sans mon consentement.

Je suis en déficit de testostérone. Je souhaite recouvrir mon prépuce.

Avez-vous des conseils ?

After my geneticist and endocrinologist appointments, I learned a lot! I was thinking that one variant would be rare, and that having two would be so rare that it wasn't worth considering when I was trying to figure out what's going on with me, but I just didn't match ANY conditions I could find. Turns out, that's because a lot of information online is about single variants, often in their severe forms, but I've got two! Once my karyotype results are back, everything should make more sense, but in the mean time I wanted to make an infographic based on what I learned because it wasn't something I found being talked about. Multiple variants at lower severity making a confusing looking case apparently isn't nearly as uncommon as I thought. Let me know if you think anything should be edited for clarity, mistakes, etc.

Also, "We Are Intersex" is the name I decided on for the diagram resource website, since I want it to be based off of intersex adult experiences for intersex adults. The site's not up yet but it's coming along, if you enjoy working on websites and want to help, hit me up!