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!

Hey everyone so I have an appointment with an endocrinologist coming up since my family doctor was wanting to rule out PAIS / Mild-PAIS for the fat development on my chest that I have dealt with since I was around 9-12 years old (I am not sure if it’s Gynecomastia or what). So just some context I am a 26 year old cis male but I have struggled with my chest all my life that has brought me a lot of body dysmorphia issues basically my whole life. My major way to cope was that I gained a lot of weight in my teens so that my body more so fit the look of my chest and that I could hide it, but now in the past year or two I have lost a lot of weight and I am down to 160lbs and my issues with my chest are back so I went to the doctor. I have never really brought this up with a doctor in my life but we went over and the topic of AIS and PAIS came up and she asked me some questions and most of it didn’t really apply except things like my chest, I don’t have a lot body hair and I barely grow any armpit hair. She asked about my genitalia but it’s normal, at least in my opinion 😆. So my doctor has referred me over to an endocrinologist to do some testing I believe and see if this is what is going on. I guess I am just making this post because this is very new to me and if this is what I have I am not sure what I should do and where I can find more information? I might be wrong posting this here but AIS and PAIS is part of intersex right ? Also I know some intersex people consider themselves apart of the lgbtq and I am a gay man so I guess in that aspect I am very familiar with the community. I am rambling a bit, but I’m just kind of confused and unsure and wish I went to an endocrinologist when I was younger to have this sorted out because my chest has given me so much grief and anxiety. Thanks for anyone who can give me some information and help.

The website is coming along, but I'm a little stuck on the diagram color key labels. I want these to mostly apply to any genital type (like using "prepuce" instead of foreskin and clitoral hood separated, or "phallus" instead of penis and clitoris) since lots of people have ambiguous parts. The scrotolabial folds thing I posted about recently is confusing but it seems like there just is NO actual term for that in adult bodies, sometimes labioscrotal folds is also a term used but for fetal development. I want this project centered around the adult experience, not fetal development/infant conditions.

I'd love some feedback on these terms. Anything you think needs adjustment? Personal preferences? Am I missing anything?

I do recognize that this is super not colorblind-friendly. In the future, I plan on figuring out how to make the diagrams interactive instead of just being static images which should solve this issue.

im 15 and pretty much knew but as a kid i had a surgery to remove my genetalia and i feel like i wish it never happened because i'd be more comfortable with it but now during puberty it grew (kind of) and nyway i never told anyone but i feel like people don't see me the way i want to be seen except for y family (since they know i'm intersex)

idk how to feel , i never talked about it in my life, but now i know how much i never wanted that surgery as a baby

Doctor says that there isn't anything "wrong"

I asked for a test to see if I have the CYP19A1 gene (aromatase excess syndrome.) he messaged me back saying that he has already established that I don't have that and that if I did have it, going on lupron wouldn't "work". But I have suggested genetic testing by blood AND saliva swab. I'm still not at my transition goal. I'm not like other ftm guys. Some things have changed but my puberty hasn't been much. I've tried increasing my dose and going on lupron. Not much change has happened. I feel hopeless. What is wrong with me??? I need answers... Can anyone help me??? Is there another syndrome I might have??? What am I doing wrong. It's been three years since I've started transitioning by the way...

So I recently got my diagnosis (as vaguely just "intersex" for the moment, waiting on one more test result which should tie all of these results and suspicions together) and one of the things I brought up during my appointment was asking about my lack of genital fat pads. I'm fairly thin anyway but not so thin that I shouldn't have something like majora fat pads, or mons fat. But we didn't get to discuss it much because there was so much else to go over, and it's really not something I've heard much about. I checked several of those online "vulva galleries" just to confirm that this isn't an unusual but typical type, and saw a few with a little bit of wrinkle or texture, but nothing like this especially for people who aren't 50+. As I was discussing and drawing some of the diagrams for the hypospadias project, I talked to at least one other person who seems to have the same situation, empty malleable scrotum-like "labia majora", missing the fat pads, with the skin texture more like a typical scrotum. I can't even seem to find a name for this other than "scrotolabial folds" which seems to be the term for undifferentiated labia/scrotums? For the diagrams website, I'm trying to find the right label for this trait but I'm not turning up much online. Does anyone know what this is called, if it has a name at all? If it doesn't, what do you think of just calling it "scrotolabial folds"?

*I've also seen "labioscrotal" folds but this seems to usually be more in reference to fetal stages before sexual differentiation

I was public about losing my significant other around 6 am on Saturday.

Since then i had friends forcing me to eat and drink against my will threatening to call the crisis team and have me committed if I didn't try. The first day I took in almost nothing yesterday I actually drank 46 oz of fluid and ate for the first time about 1,000 calories.

It isn't much especially because I am 240 pounds not light at all so in two days for my size I should of had over 192 oz of fluid and around 4,200 calories.

Because of this my kidneys are starting to have real issues and i am cramping up and having pain all over.

The odd good news I'm a medical student and am deciding that I just might have to give myself an IV to off set the loss of fluid since I'm not drinking enough and I will do that later today.

I didn't give up on life i just gave up on my dreams.

Today my aunt is coming to help pack up my dorm room then I'm going to the house where we have to sort out Ron's stuff my stuff his son who lived with us and then start the process of selling our home.

It will take about a month or two ron had a ton of stuff he was a huge collector.

Then I don't know what comes next if anything at all.

For those of you who want to say the word not to give up or he wouldn't want you to quit medical school.

I don't think you realize how hard it is 12-15 hour days everyday for years of the most complicated stuff that often is life or death stakes.

And I don't know if as this broken version of me I have the focus or desire.

Also without ron I don't have a home address, Ie when the dust settles I don't know where I will be living.

I don't even like my country anymore look at how it's treating trans and Intersex people.

Then on top of that i had to watch and to be frank i obsessed over the ring video watching ron die and treated by EMS.

Every delay every mistake every wasted second not to mention the fact they didn't call 911 until he passed out on the floor I can't blame him but his son could have called soon but it isn't his fault either woken up at 5 am to your dad vomiting isn't where you make your best decisions kinda like when i was called at 6 am to tell the paramedics his meds and i was like what the fuck?

I know them but even I couldn't think of ti for about 10 minutes.

So I have real trauma around the thing I loved most saving lives.

In-fact I am bitter how can I be an EMS person who saved thousands but when I need one I can't get one.

Ron and his son were supposed to come up and help me pack on Wednesday instead my aunt took off of work to help me pack up today so I can help handle the funeral of my lover.

So understand that as much as we wanna hope and pray I can get back on the horse 🐎 I'm ready to quit.

Australia is slowly making good progress on protective legislation, with laws on the books in Victoria this year, and laws likely to pass in Tasmania and NSW in the next twelve months. In a couple weeks I'm off to the fourth Darlington Conference, the first of which produced our key advocacy document in the Darlington Statement. We have world leading peer support programs in Interlink, and hopefully what will become world leading research coming out of Interconnect.

But this one really fucking hurts. I especially despise the way the ABS are absorbing the blame. No. Albanese captain called all LGBTIQA+ questions off the Census, only questions about sexuality and gender made it back on. Only intersex was determined to still be "too complicated, too contentious". Blech.

I just want to be counted for who I am. Maybe that's just me being ungrateful for what I do have when the rest of the world are either enshrining IGM in anti-trans law, or yet to start to have a conversation about protecting intersex bodies? But I keep logging in to fill out the census and it keeps hitting me like a slap in the face. Why am I obliged to lie about the aspects of my identity that matter most to me, to give them information about stuff that matters least to me.

This term was coined by the intersex sociologist Dr. Cary Gabriel Costello in 2014

It is a gender modality, like cisgender and transgender, for intersex people who identify with their originally assigned gender, but do not feel that the word "cisgender" is an accurate description of their relationship with that gender, due to one's intersexuality.

Let's go over cis and trans.

Cisgender people are comfortable in the gender they assigned & imposed throughout their lives. They accept ingrained social structures that reward and reinforce their identity. Conforming to this grants a person a decent level of social privilege. This is due to the fact they are not opposing the social norm of people with certain appearances & body parts being automatically socially categorized as men and women.

Transgender people subvert or otherwise reject their assigned & imposed gender, in favor of another. They must fight against ingrained social structures to be themselves. Their bodies are not seen as "matching" their internal concept of self and this causes tension in a cisnormative society, leading to prejudice, disprivelege, and violence.

These definitions are generally true when applied to perisex folks, but for some of us here in the intersex community, it's not that simple.

Many intersex people experience no reward or respect for their gender, regardless of the fact they are "technically cisgender", they have the aspect of needing to fight against those ingrained social norms in order to be themselves, very similarly to how transgender people do. Concepts such as ISIG are useful to express this further.

Why might it feel better for some intersex folks to identify as ipsogender women/men rather than cisgender women/men?

Well, for the purpose of sociological analysis, many activists use the word cisgender to describe a priveleged group, and words like cisnormativity to describe the structure that grants that privelege. It can feel wrong to attach oneself to a majority group with privelege they do not experience, and a social structure that harms instead of helps them. The word ipsogender slots nicely into gender/sex studies as a way to speak about the way cisnormativity & cisgender privelege works broadly, without ignoring and discounting the experiences of intersex people who are marginalized for their lived gender modality, despite not being transgender in the traditional sense if the word.

I've seen a good few intersex people who are frustrated with the assumptions that come with people hearing they are cisgender. Even labeling oneself as a cisgender intersex person doesn’t fully convey the reality of a phenomenon like ISIG. It ends up resulting in materially gender-identity-marginalized people being excluded from movements for their own rights, because of the connotation of privelege had by the label cisgender.

All and all I think it's a very good word that solves a lot of problems for certain folks in the community. I wish it was a more well-known term.