#yeah the more I learn about PCOS and being intersex

[hazel2468]

I know I've said something similar before but like.

People are all "uwu we shouldn't let kids do hormone blockers or have surgeries because children can't consent to that!" and like. Aside from the fact that no one is doing gender affirming procedures on kids.

I would be willing to bet my left tit that these are the EXACT same fucks who would have given me shit from middle to high school and into college about getting laser hair removal, about my voice change from a soprano to an alto (not severe but noticeable, as I was a singer), who said I should amputate my healthy stomach so I could be more thin and "ladylike", who gave me ENDLESS shit for my body hair, including facial hair, who demanded I shave and pluck and squeeze myself into clothes and an image that didn't fit me and who ENCOURAGED me to take medications and have procedures that would permanently alter (and in the case of weight loss surgery? Damage, most likely) my body to fit what THEY thought I should be.

All because I have PCOS. My body is not what people expect of a cis woman's body.

Gee. It's almost like it has nothing to do with kids not consenting, and EVERYTHING to do with these chucklefucks wanting to deny trans kids access to life-saving care AND wanting to force intersex kids into medical treatment that they, by their own logic, cannot consent to.

But that's all fine when they're making us intersex folks "normal", huh?

[ipso-faculty]

Is saying "intersex and/or mesosex" the same way of saying "trans and/or nonbinary"? Sorry I'm trying to (un)learn, I don't want to be seen as insensitive

No, mesosex should be thought of as a subset of intersex. I'd just say intersex. 👍️

I'm gonna give you a wall of text of context so upfront a TLDR: 😅

TLDR: positioning mesosex as in between perisex and intersex is like positioning bisexual as in between queer and not-queer. Intersex people are organizing for inclusive views of intersex and trying to create a middle ground between intersex & perisex plays into conservative efforts to divide and conquer us. 🧑‍🏫

So a big difference between being intersex and being trans/nonbinary comes from the role of medicine being far, far more powerful in its control and oppression of intersex people. In a lot of ways intersex is more like disability than like other queer identities. So much of intersex identity is gatekept by doctors. Intersex people are often told they're intersex by a doctor in a context of telling them they are disordered and broken. Fostering community amongst intersex people is hard because so many of us have been conditioned by doctors to think of themselves as rare freaks.

Right now we in the intersex community are fighting a kind of desperate battle for people to understand that it is intersex people who decide who is and isn't intersex, as opposed to it being up to doctors. And the intersex community consistently says that people with PCOS, Poland Syndrome, or even no diagnosis, who feel that their experiences line up with being intersex are intersex.

Meanwhile TERFs and other conservatives are pushing real hard to keep the definition of intersex as narrow as possible. They don't want intersex people to be common or for us to find community. They're invested in a narrative that intersex people are rare, and are disorderd men/women.

Right now, the track record of treating mesosex as not intersex has unfortunately been that it reinforces those conservative narratives. It's gotten used to imply that people with PCOS aren't really intersex, that they are mesosex instead. Same for undiagnosed intersex people. 😭

Even though this is not what I intended for the term, seeing what's happened with it in the wild it's been honestly scary and upsetting seeing this term get weaponized against an inclusive view of what intersex means. (And more experienced intersex folks raised concern about this well in advance 😨.)

Intersex being an umbrella category I think there is value in having microlabels within the umbrella category, which is why I updated my definition of mesosex rather than abandon the term altogether.

But yeah I would definitely steer far away from treating mesosex as though it's in between intersex and perisex - it's really not at all analogous to being nonbinary. I'd say a better analogy is that treating mesosex as if it is between intersex and perisex is like treating bisexual as being in between queer and non-queer.

The stakes are political inclusion and organizing - politically speaking, any effort to create a group between queer and non-queer generally serves to weaken the collective organizing of queer people. Same deal with intersex. Hope that clarifies things. 💜

[butchbarbieagainstterfs]

Would you be willing to analyze this post? This is not like how my PCOS was diagnosed at all and feels like PCOS and other intersex conditions are being used as a talking point here. I'm nonbinary myself, but I don't support using my chronic illness as "proof" of whatnot about gender. I had to start taking birth control to stop having a period 24/7, and my hormones had been so out of balance due to PCOS that taking birth control finally helped me make progress with my mental disorders that were impossible to lessen while my PCOS was untreated.

-I don’t know all that much about PCOS but yeah I have never heard of it being diagnosed in that way. If it is in some places, that sounds like malpractice which is a definite possibility, malpractice happens, but still.

-the race specific diagnostic tools aren’t something I’m going to touch on here really bc I’m white and I feel like analysing that part would be better suited to someone who is not.

-they’re definitely misrepresenting that quote about there supposedly not being a “normal” natural testosterone range in afab people. It seems like doctors do view there as being one, they just don’t necessarily know the specific range it needs to be in for it to cause adverse health issues. EDIT: someone else has said there isn’t in fact not really a “normal” natural range for afab folk, so perhaps I’ll do more research into it. I’m deffo open to being wrong here and learning new information :)

-the gender binary is racist but this isn’t also isn’t really gender binary, this would be more sex binary and bioessentialism. Which are equally racist from what I’ve read, but I digress.

-I feel like this person is a well-meaning dyadic but yeah I don’t think some of her sources seem to be saying what she thinks they are tbqh. She’s deffo misunderstanding and misrepresenting some things here.

-anyway @ everyone, if you’re going to talk about a condition that you don’t have, please please talk to people with the condition first if you can and please be very careful about how you represent information about the condition.

[intersex-support]

Idk if its related but ive been suspecting that i have pcos as my periods have been crazy forever(gone a full year and half without one), have a "t voice"( idk how to really decribe it but i sound like im on t despite never taking hormone blockers or patches), the hair on my arms, legs and stomache got darker and ive been growing a beard for a year now. (Also the other related things like weight gain though i dont have the pain. I had it bad when i got my first few periods but im 21 now and they dont hurt.).

However, i have abit of tmi question. Is it normal for those with pcos or other forms of hyper-androgynousism to have a more/less sensitive clitorus, less than average sensitive internal vagina(maybe even a smaller/shorter vaginal canal?) and/or to have a bigger clitorus than a perisex afab? I remember learning about t (i used to id as ftm/nonbinary but now im two spirit, though i still hsve full intentions of going on t eventually and getting top surgery.) And learning that on t, your clitorus might grow and become abit more sensitive, essentially becoming a "tiny penis"( with some obvious differences but yeah). Ive definitely been good with internal sex but it just dosent get me upto the place only messing with the clitorus has and my perisex female partner dosent understand how i can only go from that as well as mentioning that its bigger than any other afab shes been with.

To note: im fully aware that orgasming from just penetration is something only like... 1 in 3 afabs could achieve(i used to read studies about it cause i thought i was broken cause i couldnt finish with just penetration :/) but now im wondering if the fact its bigger than most ive seen on perisex afabs and i dont get as much enjoyment from internal play as i do from that if its just me being ill-informed on my own body/other afab bodies or if its a side affect from the pcos/my hormonal intersexuality. I dont fully know my condition so there could be some crazy stuff happening internally that i just dont know about but what i do know is that i have a hormonal imbalance that isnt present in the other afabs of my family and none of them have ever grown a beard or a deeper voice or been without a period for as long as i have.

Hey anon!

So, it definitely sounds like you're having a lot of signs of hyperandrogenism which could definitely cause clitoromegaly (having a larger clitoris). The other things you've mentioned like having differing sensations in the clitoris and a smaller vaginal canal are also both things that could be caused from hyperandrogenism.

To be honest, it's possible that these could be caused in PCOS, but studies say that this is a less common presentation in PCOS and it's more likely to be associated with a different cause, like Congenital Adrernal Hyperplasia. The shorter vaginal canal is defintely something more associated with (N)CAH then with PCOS.

I think that a lot of intersex people I know express that we have a lot of experiences of sensation, pain, and pleasure during sex that seem to differ from the way our perisex partner experiences it. Of course, everyone's going to have their own unique experience, but you're definitely not the only intersex person whose sex is impacted by their variation.

So overall: everything you've described could be caused by hyperandrogenism, and there are some people with PCOS who have these traits, but these traits are more commonly associated with NCAH or other variations then with PCOS.

If you have any more questions, please feel free to ask!

[sirenium]

'ignore everything about the condition' yeah okay. We wouldn't be advocating for PCOS being intersex if we 'ignored everything about the condition' lmfao. Honestly though, I'm tired of dealing with someone who's not here to learn and grow as a person, so I'm going to end the convo before I waste more of my time. good day.

Not to be an annoying activist or anything, but I honestly really don't appreciate Kat Blaque, a PERISEX person, talking over intersex people because of what the infamously intersexist medical field has to say about PCOS. 'Doctors say that PCOS isn't an intersex condition' yeah and doctors have said that homosexuality is an illness. The medical field ain't perfect and can fuck up and grow.

I did NOT get put on hormones at 13 to 'fix' myself just for some perisex person to come along and say I'm not intersex because I don't have a medically recognized variation, despite the fact that things like CAH get misdiagnosed as PCOS and vice versa all the fucking time. Maybe we should take what the medical field says with a grain of salt and listen to actual members of communities. :/

[intersex-questions]

How often do you think intersex variations, especially ones considered really rare, go undiagnosed? I remember seeing someone talking about ovotesticular syndrome & saying that people make it out to be rarer than it is. I imagine medical intersexism is responsible for a lot of misdiagnoses/ignored symptoms/erasure & causing people to avoid getting diagnosed in the first place

Oh gosh yeah, I think they're super underdiagnosed. I'm pretty confident ovotestes are not that uncommon as I've known several people who thought they were perisex only to learn they have ovotestes, on their own, without a doctor.

There's a lot of intersex conditions that don't have adverse health effects, and when things are like that (so like, asymptomatic), they're rarely diagnosed.

In general, doctors don't like to diagnose things unless it's impacting your health. Like I'm intersex, but even if I wanted to get a diagnosis for it, it'd probably be impossible or incredibly expensive as I have little to no health issues from being intersex.

Even common intersex conditions like hyperandrogenism and PCOS are incredibly underdiagnosed.

I think some rare conditions are probably diagnosed more accurately if they're ones that can cause death without treatment especially at birth, but "diagnose" is a stretch as many doctors will hide the diagnosis, lie about it, etc.

But a lot, especially anything without major adverse health effects, are probably incredibly underdiagnosed. I see the claim and accepted fact that ovotestes are incredibly rare when, in my experience, outside of intersex spaces, I've met many people who've learned they have ovotestes. I've met many perisex people I've helped realize they were intersex.

And unfortunately, even good doctors are subject to intersexism due to the fact it shapes their knowledge, available tools, and the fact it shapes the system they work in. I've had doctors who want to help me in terms of being but can't.

PCOS affects like, at least 7-10% of cis women (this statistic might include people who aren't women with uteruses that can develop PCOS as well, unsure). And if you're in more open intersex spaces, you'll learn that yeah, PCOS is intersex. But medical professionals and sometimes even intersex people don't want to accept this because it means a LOT more people would be intersex. It means intersex people would have more power, but it also means there's intersex people who won't want to be or hate other intersex people despite being intersex.

Hyperadrogenism affects at least about 5% of cis women (and I don't know if this statistic includes other people who were assigned female at birth but don't identify as women, similar as above). Which includes many women with PCOS, but many women without it as well.

Clitoromegaly and micropenises aren't really that uncommon either (~0.5% for cis men iirc), and micropenises are a really well-known intersex condition (and one of the ones subject to incredible amounts of casual intersexism, I mean, how often do you hear jokes making fun of micropenises?).

And that's just talking about common ones that are definitely underdiagnosed??? And there's probably even more intersex conditions we don't even know about!

But basically, I think they're underdiagnosed all the time. I think there's a false narrative from some people in the intersex community that if you're intersex, it'll almost definitely have been found out by doctors by the time you hit puberty, and likely before then. And that if it wasn't medically hidden from you, you didn't go through medical issues from it...you're not actually intersex.

Which is crazy to me! I have ovotestes and hyperandrogenism, and I've never been diagnosed! My doctors had no idea! So I'm already one of those people with a "rare" condition by not included in those statistics!

I'm not a statistics person nor do I have a lot of knowledge on the medical field but I wouldn't be surprised if like, 10% of people were intersex. Considering that PCOS already affects like 10% of cis women (or people who were AFAB, potentially)...that's not even accounting for all the other intersex conditions cis women (or people who were AFAB) can have. And women/people who were AFAB are like, y'know, about half the population...

Like, queer people (outside of intersex people) are only a "small percent" of the population, but it's kinda obvious that's not true and it's much higher than that considering how many people must be closeted AND how many people who don't realize and never get to realize they're queer.

TLDR; I think they're super underdiagnosed in a significant chunk of the population, especially rare ones. I can't say any numbers for sure but it's definitely high.