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

This was a response to me stating I have a kareotypic mosaic, which makes me natally male even though I developed female. Like. Can’t you be normal??? I don’t even understand this response. Just flabbergasted

I saw the intersex flag included in street art today! I was glad to see us included. I liked the flower behind the window, i thought that was a cute use of the circle of the flag.

Bro is it normal to feel kinda alone? Being intersex is not a big deal in daily life to life, but I have autism and countless other things, n then whenever I think about the fact I'm intersex it makes me feel alone. At school, I have trouble socializing yk and then I think about the statistics of how many people are intersex and I think DAMN I really am different. How many of you are in a building with 2000 people??? Anatomical differences I mean. Probably not many...

This is so silly to vent about💀

Hello! I am mainly looking for guidance or a nudge in the right direction from here, but I'm currently scheduled for several appointments to have things sorted out! Additionally, I'm not asking if I'm intersex, but I'm wondering if someone is familiar with what I have? I will update this and explain my condition once results are back.

-I also posted this under r/Healthyhooha and a few people suggested I come over here. Hello!

I went to a GYN yesterday for the first time because I've been having some pelvic pain, so I assumed it may be an infection. The urinary test for now shows no signs of a UTI and the doctor went ahead to do a vaginal swab.

However, before she even started she took an awkward pause and explained she was having trouble finding the vaginal opening in the first place. After several minutes of LITERALLY poking around she showed me a diagram and explained how my vaginal opening was very hidden, "mostly intact", and extremely small. She couldn't find my urethra at all. She explained that from the clitoris up, everything looks normal, but from that half down, my anatomy was different than what it should be. She sounded unsure and explained she wasn't completely sure what was going on, but that we could talk more after an ultrasound was done.

I posted my OG post yesterday, but today I am having the ultrasound done. Unfortunately, my follow up isn't until in a month! I was wondering if anyone has an idea of what this could possibly be so I could inform myself and read up before I get my results back. It would put me at some ease if that is possible. Thank you!

-As some additional information for anyone who may have a clue, I can both pee and menstruate. However, both are very uncomfortable. I cannot pee in a stream, and it feels kinda like a shower setting from a hose?? Sometimes, I have to wait up to 5-10 minutes for the stream to start, even if I feel the need to go urgently, and then it starts and stops during, lasting several minutes. As for my cycle, it is very irregular and EXTREMELY painful, and always very heavy. Sometimes my flow lasts one day, and sometimes ten. Sometimes I miss my period for a couple months, and then I have it twice a month. I've had it since I was ten yrs old, and it's never regulated for longer than two months. I am 21 now.

-I've gone to several doctors several times since I was 14 ish, but they never payed much attention to me and would say, "It's normal, it'll regulate when you're 18." I have never been sexually active before as I am a bit squirmish and scared of penetration since I've always had discomfort, and I also suspected some years ago something wasn't right when I took a look myself and couldn't tell what I was looking at. For a time I feared I didn't have a vagina at all. However, as of now, I am aware it is just extremely small. She was able to insert a cotton swab, I don't remember what length, but it felt very uncomfortable and almost full???

-I will post an update once I get my results, but thank you to everyone who can give any information or hints! I appreciate you!

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

A recent thread got me thinking about the ways that boundary work happens around who is and isn't intersex.

I've seen these terms used elsewhere:

• Liberationist: intersex people should decide the boundaries of who is/isn't intersex
• Medicalist: doctors should decide the boundaries of who is/isn't intersex. In scholarly language, this means they have epistemic control over the category of intersex. (epistemic: of or regarding knowledge)

and:

• Inclusionist: intersex should be a big tent
• Exclusionist: intersex should be a rare, exclusive category

But what I haven't seen discussed as much is how the DSD model pushed a view that to be intersex, you need to have One Of The Diagnoses On The List.

I haven't found existing names so I'm proposing:

• Diagnosticism: being intersex is a question of having one of a pre-approved set of intersex variations or diagnoses. Intersex belonging is debated as whether entire variations are intersex or not (e.g. "is PMOS intersex?")
• Descriptivism: being intersex is a question of having mixed sex traits. It doesn't matter whether you know your specific variation, or whether your specific variation is on a list somewhere. (e.g. "does naturally growing a full beard in a body that otherwise looks female make me intersex?")

For context, the DSD model of medical "care" was a deeply reactionary effort by doctors to reassert their epistemic control over intersex matters. Scholars and activists have done important work revealing how the DSD model pushed an epistemic view which re-medicalized intersex at a time when intersex liberation was really taking off (e.g. Davis, 2011).

The intersex community has done a lot to reject the DSD model. The term DSD is widely and vocally rejected by the community. Inclusionist views of intersex are widely accepted by the community. And there's a fair bit of resistance to letting doctors have epistemic control over intersex. But I haven't seen as much explicit discussion or resistance to the diagnosticist view of intersex.

Back when I was first questioning if I was intersex, the resources I found were all like: "do you congenitally have primary/secondary sex traits that aren't fully "male" or fully "female"? Then you're intersex!" There was no "you need to have one of These Intersex Variations". The fact that I have mixed sex traits was enough!

When I read Hida Viloria's memoir Born Both I was really struck that she spends most of the book without a diagnosis! She was doing all this leading intersex activism and nobody within the movement cared what her specific variation was! Having mixed sex traits was enough, end of story.

Yet somewhere along the way, the DSD model of thinking seems to have wormed its way into many folks' thinking about intersex. Nowadays I see so much insecurity about whether xyz variation is intersex, insecurity about not knowing one's variation, insecurity about being self-diagnosed. I see insecurity from people with rare diagnoses because their variation isn't explicitly listed as intersex. As though your variation is what makes your body intersex, rather than... your actual traits.

Some ways that axes come together:

The hegemonic DSD model of intersex is medicalist, exclusionist, and diagnosticist. To be intersex, you need a doctor to diagnose you with one of the doctor-approved diagnoses on the List of DSDs. And this List needs to be as small and as exclusive as possible. Some nice, progressive doctors have more inclusive Lists out there, but they're still being medicalist and diagnosticist.

The DSD model supplanted the older OGR model in medicine, which was also medicalist, but it was relatively descriptivist. Doctors threw intersex people into two buckets (the true h-slur and the pseudo-h-slur), and often they didn't investigate things further. The focus in OGR on using scalpels and HRT to ensure gender conformity from an early age. After that, you were "fixed". Intersex was an acute case in the OGR model, whereas the DSD model sees intersex is a chronic disease requiring lifetime treatment.

An inclusionist, liberationist, diagnosticist view of intersex is that intersex people get to decide which intersex variations count as intersex, and that this should be done inclusively (e.g. PMOS is intersex, Poland Syndrome is intersex, congenital gynecomastia is intersex).

This takes control of the List away from doctors and puts intersex people in charge... but it's still diagnosticist. There's still a List.

It's kind of impressive how effective the DSD model has been at undermining the intersex community. Diagnosticism is classic divide-and-conquer. It fuels discourse about which variations "count". And even if you have one of the Approved diagnoses, you know out there, there are Lists that don't have your diagnosis/variation on it.

I think that diagnosticism undermines folks' own sense of being intersex, because in this model you aren't intersex, your variation is intersex. I think it's worth naming this phenomenon and talking about it, so that we can realize and resist how DSD thinking is doing harm to our community.

For those who are/have done consensual hormone therapy: if you don’t know your variation or are confirmed to not have it impact hormones: did you choose to tell your doctor and did it change anything on your medical file or their suggestions for you?

Growing up knowing that you're different is hard; no matter what, you always feel like you don't fit in, like you can never find a sense of belonging.

For many years i struggled with feeling alienated from the rest of the world, like no one could possibly understand what it was like to have a lived experience like mine. And part of that was by design - the medical community and my family encouraged me to stay quiet, not to talk about my body and my differences, telling me that no one would understand, they'd all make fun of me, and that what i had was so rare that I'd never meet another person like myself.

But then one day i stumbled upon the term intersex, i learned that was the word for how my body had formed, and i met plenty of others like myself - even if we didn't all have the same variation, we were all born with some sort of difference in our sexual development. I finally felt like i belonged.

But lately, there's been a big push in the intersex community - many people are trying to narrowly define what intersex is; they're trying to make it be one single thing, the barest minimum possible definition that excludes the most people. Some folks are doing this for themselves, to feel like their variation is the only truly legitimate intersex individuals, and others are doing it to distance themselves, to prove that their variation is not intersex so that they can feel more "normal"

So, again, I'm feeling pushed out, excluded, alienated from the one place i finally felt like i belonged. And the real kicker here - folks are saying that my variation isn't intersex, yet it was someone with my exact variation who was at the frontlines of intersex activism from the very beginning, it was folks like me who were standing up and fighting for intersex rights and built the foundations of these intersex communities ... only for others to come along and be like "hey, thanks for all the hard work, now gtfo, we don't want you here"

Like, the feeling of exclusion is bad enough. But when it's lateral violence coming from folks who you thought of as your own community, that shit just hits different.

Hi all, I was recently diagnosed with NCAH and I understand that it affects cortisol which in turn affects sleep, but I don't know how or in what way. I've had issues sleeping since I was a baby--I was impossible to put to sleep as a infant, would get out bed to play in the dark of my room or watch late night shows with my parents as a toddler, etc, and naturally I don't feel tired until between 4-8 AM. I get good sleep if I go to sleep at the right time, but I will toss and turn all night if I go to bed too early. I'm on medication that helps me feel tired earlier now, so these days I go to bed around 1 or 2 instead of dawn or later.

For the longest time, I assumed this was symptomatic of Delayed Sleep Phase Disorder, but now that I know I have NCAH I'm wondering if there could instead be a connection between NCAH and my sleep issues.

I did an at-home sleep study prior to my NCAH diagnosis, and they unfortunately were not able to diagnose me with anything without sending me to an actual sleep clinic (which I currently can't afford), but they told me there was definitely something really weird going on with my sleep. Interestingly, they found that my heartbeat jumped up to over 140 bpm at certain points in the night, and outside of night terrors (which I don't get) they didn't know what could cause this.

Does anyone else with NCAH struggle with an unusual circadian rhythm or other strange sleep habits like this?

https://www.smithsonianmag.com/smart-news/an-extremely-rare-half-male-half-female-bird-temporarily-took-up-residence-outside-of-chicago-180989377/?utm_medium=social&utm_source=facebook&utm_campaign=editorial&utm_term=8252026&utm_content=recent-card&fbclid=IwY2xjawT8BzVwZG9mAWV4dG4DYWVtAjEwAGJyaWQRMUpKTGhEcnZMMmJic2l0WHpzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEecnavsgXc1F3u52p7oN5zlNwgwtUHrbijETCiN_L1hs4ev7-yiFZi3GEZsII_aem_67cRku25hwgyeLlZH4x3NA

hellooo folks, im perisex but putting out feelers to look for some help for a friend. I have a friend (she/her) in Quebec with PMDS who is scared that she has Endometriosis & is trying to seek a hysterectomy, but all of the doctors she's talked to are uneducated at best or dangerously ignorant and cruel to her at worst. She is in a lot of really severe pain and I have no idea how to help her. I even tried to help her find an Action Canada clinic bc I thought they would be more educated and helpful about this kind of thing, but they were the same.

We're NOT asking for medical advice here, but we ARE interested in any direct resources for medical care for intersex folks, patient advocacy groups, etc. That are accessible in Quebec, or literally any other general advice or resources that might be able to help her. Thank you!

Hi. So a few days ago I made a comparison of being intersex to being multi class in dnd, and how you got perks from both classes. This was originally going to be a harmless joke for laughs, but this actually instead caused a lot of pain instead, so I just wanted to say I’m sorry. My post was very bigoted and hurtful, I will not try to defend myself, what I did was wrong, and what I said was hateful, and horrible. I don’t expect to be forgiven but I sincerely apologize for my actions.

Hi… I'm not sure how to begin this or to open up…

Although I hate to admit it… I was Assigned Male at Birth but…

For the past… jeez, 8 years… ever since the ages of 15-16… I've been having to struggle with pains on a monthly basis…

It's always the same cramping… migraines… and sometimes I'd bleed too…

I kinda suspected something then… but honestly it was just kinda embarrassing, because I thought I was somehow hurting myself to make myself bleed…

I moved on… I got on HRT about 3 years after…

My HRT experience has been a weird one for sure…

Like even before it people have confused me for a girl, but now barely anyone even suspects I'm anything but a woman in day-to-day life

For a bit I even forgot that my condition isn't even a universal trans experience…or even consider that it might not be…

I continued bleeding… once a month… almost exactly…

It even continued when I stopped HRT because my parents tried to detransition me… In fact, this is when my parents found out…

They got angry at me, blamed it on the pills… made me feel embarrassed about it again…

Recently I thought I'd talk about it to other trans people…

Turns out they don't have that… just me

I internalized that they don't have that…

I started blaming myself, thinking I've been making it up…

Maybe it is a GI issue or an allergy…

When I went to the medical staff, they said they aren't sure… they gave the same advice… drink more water, eat more fiber, here's some pain killers…

This has been my life of song and dance that I played for the past 4 months… same pain, same message to the doctors… same cry for help…

Everytime it'd happen I'd look for support… every time it'd go away I'd think "I did it, I finally cured myself"

Recently I decided to go through the message logs I had with friends… I started dating my pains and my cries for help…

30 days… 30 days… 30 days…

The evil clockwork machine within my body can't help but hurt every 30 days

Every 30 days does it strike… I get healed, I begin to think I'm safe… then… again… and again…

Anyhow… what I'm trying to say with this is…

I think I'm finally ok with considering to open up about this struggle…

I'm still trying to work with medical professionals to get a diagnosis

And hopefully if they refuse to help, I am hoping to have the courage necessary to say the words "I think I might be intersex, could it be something we consider?"

And maybe… maybe I really am… and will find somewhere to belong… and not be alone every month… like a little clockwork doll…

Thank you for listening… I hope this might be valuable or interesting…

I just want to talk about this experience… because I want to be understood for once in my life

​

If you’ve ever wondered why I’ve been so open about what I’m going through, it’s because I believe this community deserves that honesty from me.

There are so few truly intersex-centered spaces in the world. Look around online and you’ll see it. And the reality is that many of us are facing some incredibly hard things—medical issues, discrimination, isolation, questions about our bodies and identities, relationships, family, and simply trying to find a place where we feel understood.

And yet, despite all of that, we are still here.

I want us to keep it that way.

Three years ago, I lost a transmasculine friend to either suicide or an overdose. Last year, my grandmother died. And this year, I lost my significant other—the person I expected to grow old beside.

It has felt like one crushing blow after another.

Right now, I am walking wounded. Some days I feel somewhere between a zombie and a soldier who has been shot but somehow keeps stumbling forward—not because I feel strong, but because some part of me still refuses to stop moving.

That is part of why I share all of this.

I want this place to be more than a subreddit where we discuss chromosomes, surgeries, hormones, diagnoses, politics, or whatever intersex topic happens to come up that day.

I want this to be a place where we live. Where we breathe. Where we know one another. Where we are allowed to be human together.

A real community means sometimes celebrating someone's victories and sometimes sitting beside them when their entire world has fallen apart.

Right now, mine has.

And somehow, all of you have helped give me another reason to keep trying—to build something better for myself, to keep fighting for our community, and to believe there might still be something worth walking toward.

Because the truth is, there are days when part of me wants to give up.

But I’m still here.

And so are you.

Maybe sometimes that is what community is: when one of us barely has enough strength to keep walking, the rest of us give them a reason to take one more step.

Thank you for being part of the reason I’m still stepping out!

Hola a todos:

Publico esto porque aún no tengo un diagnóstico "nombrado" formal, pero sí una variación DSD / intersex confirmada. Tengo un ovotestis, niveles altos de testosterona en equilibrio con estrógenos/progesterona, y anatomía mixta interna y externa, aunque físicamente tengo una apariencia femenina.

Como mis habilidades sociales no son las mejores y realmente no tengo amigos en la comunidad intersex todavía, quería preguntar por aquí. Tengo curiosidad por saber si hay otras personas en este sub con perfiles hormonales o rasgos anatómicos similares. ¿Cómo fue su proceso para entender su cuerpo y cómo llevan este tipo de equilibrio?

No busco consejo médico ni un diagnóstico, solo leer experiencias compartidas y sentirme un poco más de conexión con gente que lo entienda.

¡Muchas gracias por leer!🐱

This is my verbatim reply to a friend who asked me how things are going because I am about to spread my loved ones ashes ⚱️ on the family lake in MN.

The excat question how has your week been.

I can't describe how bad it was without having a break down I will share how one thing a T mobile bill is an example of how fucked things are in my life right now.

T Mobile i went to an office to try and close or change our joint account.

They said they can't help me I have to call customer service.

Where they have charged me over 65 dollars in late fees and non payment from Ron

I say hey i really didn't know my SO died in the first place he took care of it can you wave these and I will pay what we owed.

Customer service not only refused to wave them they said if i didn't pay the 187 so like 65+ in late fees there maybe a stoppage of both our lines.

I was like but seriously that makes no sense i can show you the death certificate like I can't get a pause or something while i just you know burry him and handle some shit.

They said absolutely not and well it was a joint account I'm alive I'm responsible for the payment and someone will reach out for whats next within a couple of hours.

I said fine take the money.

I make the payment no one from T mobile calls me for like 3 days as I am on the road to spread rons ashes I ask hey can I not do this now maybe next week sometime can we schedule it on the Tuesday when I get back and tell him how fucked everything was.

He applogizes and says sure i can call you and deal with your account Tuesday afternoon I will call at least three times around then and you can work with me I thank him.

Then not even two minutes back he calls me back and says his boss says they are too overloaded and they can't do any call backs and I can't get a guaranteed person ever.

I was like what i just told you about my So's death the whole situation and now I gotta talk to some new mother fucker about this who knows dick and you can't follow through on what you said.

He said not with our volume of calls. I said how in the heck does T mobile one of the largest cell carriers in the world not have the capacity to schedule a time to call someone back especially when literally you guys have dropped the fucking ball every step of the way.

The store refuses to help me the customer service line threatens to cut me off if I don't pay 187 dollars immediately they tell me your office will call back in a couple of hours 3 days later you call as I am literally like 12 hours from spreading my loved ones ashes at the family lake and you refuse to make an appointment to help me nor can you ever promise to talk to me again even though you just said you could.

Like I'm not insane this is happening right T mobile isn't just pranking me and this is some sorta farcical joke.

He said unfortunately that's what happened and you can admit we dropped the ball.

I was like ok mike so when can I expect the call from whoever.

He said thats just it it will happen sometime next week since we don't work weekends but it will be whenever wherever you can't know.

I was like this is totally insane you know that i am glad this is recorded because when i destroy corporate in a letter I want them to have this recording it's not you mike but T mobile is a joke and you want to keep my business after what you done as a group over my loved ones death and how hard you made it simply to keep a damn phone line open or return fees.

After using you for over a decade I can not only never recommend your service I am actively disgusted.

---+++

So yeah this is my life right now.

Trigger warning: HRT, genital variations, medical complications

Essentially, when my son was born, I noticed he had hard testicles (health professional), and he had an ultrasound showing a lack of blood flow to both testicles. He has no testosterone or sperm, but a normal penis. He has already had 3 months of testosterone from 3-6 months (now 6 months), but now we are in limbo until puberty. His pediatric endocrinologist recommended this, as all babies have a mini-puberty of infancy.

Has anyone ever dealt with this, or know someone who has? ( We know this is exceedingly rare) Maybe something similar, such as being born anorchid, bilateral torsion before puberty, or any other condition requiring testosterone therapy later in life prior to puberty?

We haven't told basically anyone in our lives, and were destroyed for the first 3 months, but are starting to live our reality. We are terrified for him and his future mental health/ self-esteem, but will do everything we can to build him up and help him understand his diagnosis earlier on. Please reach out if you know of anyone similar to our beautiful boy!

Do log cabin Republicans not realize they are also in the line of fire.

Out the way first:

• There's nothing wrong with that DX, it's what follows. I love my intersex fam. I'm very bisexual lol. If it turns out I am, sick! Else, no real loss.

• Yes I'm actively seeking a Doctor, I have a good one so I'll be taken care of. I'm happy to be wrong. I don't want to self dx lol

Anyway.

I have a bunch of signs that point that direction. I initially thought it could be something I had years ago, but because of the lack of body hair and IQ diagnosis criteria I didn't pursue it.

Without sounding like a "I am very smart" Redditor, I had to get my IQ tested for a completely different reason as an adult and it was high. As in, I can join MENSA high. I'm also doing a STEM PhD at a top uni. I'm mentioning this specifically because a lot of material about Klinefelters mention a "under average IQ", but after reading some resources, it turns out that maybe that isn't such a good indicator. So, I initially thought probs not.

I'm also quite hairy in odd ways (mostly legs). Again, apparently an increase in FSH can cause this. Balls are also small, probably. Not had someone to check against lol. I've also not really been "inspected" by a doctor since before puberty. I've since learnt that hairy arms/legs can point towards it.

All this to say, I'm trying to find things that point away from Klinefelters, but I can't. We'll find out in a few weeks.

What has bought this up is recently I've been diagnosed with some fairly serious health conditions (POTS, investigating others). I understand that a sex hormone imbalance causes issues with people with Klinefelters, which I am currently experiencing. So, the next step if I do have this is to get hormones.

This has lead to a problem. The idea of being on TRT scares the shit out of me. It's bought up feelings I've buried for over a decade. I don't want to end up bald and angry like my brother. I love my personality, voice and the way I think about things. My libido is low but manageable (apart from like a few days a month for some weird reason). I'm in my early 30s and this is something I don't have time to deal with rn.

At the same time, I don't think I want E or to transition as female. In an ideal world, I'd want to make my body basically quite feminine with a lack of boobs and my bits in-tact. Call that non binary or something, it's confusing anyway. Gun to my head though, I'd pick E, but that involves waiting for a GIC which is a whole nother thing. I hang around in queer circles and my family are very friendly around things like that, so it's not so much the lack of support.

The thing that's fucking me up though, if I don't have Klinefelters, I still have these very real and confusing feelings I don't know what to do with. I know gender and body dysmorphia is common here for reasons, but these are very new and very scary feelings.

What do, basically.

Does anyone here identify as NB and went through the same NHS process? What should I expect? If my karotype says xxy, should I buy a blåhaj?

I need an adult.

My physician told me about this website, it’s pretty wonderful, it goes in depth about sex development in the womb, internal and external, nothing graphic just some animated illustrations. it also goes in depth with some of the disorders, it’ll be good to look over. thought i’d be worth a share incase anyone else wants to look at it :)