#hyperandrogenic PCOS

[dhddmods]

I didn't want to continue derailing the topic on the comment thread but I had a question about something you all mentioned about PCOS.

I was diagnosed with PCOS very young (I believe I was 9, before I had a period)

How would someone be able to know if they have hyperandrogenic PCOS vs hypoestrogenic PCOS? Or is it something I'd need to get blood testing for?

Blood testing would give you an answer, however you might be able to tell based on your symptoms.

If you have hyperandrogenic PCOS (which is roughly 80% of PCOS cases, so it's extremely likely), you'll have the typical hyperandrogenic symptoms. Which we discuss in our intersex guide, but we'll summarize it here.

You'll likely experience at least a few of these symptoms:

-Increased body/facial hair, higher muscle mass, a deepened voice, and/or clitoral growth -Early puberty (which may lead to a shorter height than average), oily skin, higher levels of acne, a high libido, bald patches, high blood cholesterol, diabetes, behavioral disorders, mood disorders, and/or anxiety disorders.

For hypoestrogenic PCOS, its a bit more difficult to identify, but you may experience a few of these symptoms:

-Less or minimal development of secondary sex traits -A delayed puberty, a low libido, genital dryness, a higher risk of urinary tract infections, less body/facial hair than average, low bone density, heart disease, sleep disorders, depressive disorders, anxiety disorders, and/or frequent headaches.

[yourfaveisintersex]

Jenny Becker from Our Permanent Vacation (made by @ravenlynclemens) is canonically intersex, and her variation is Polycystic Ovary Syndrome (PCOS)!

[newtscamandersbf]

girl i got snow vision syndrome, tinnitus, i need glasses (u aint ever catching me wearing them tho), low vitamins d and c, low omega-3, low iron, pcos hyperandrogenism, various mental health problems, acne, am trans + gay + aroace spec, neurodivergent, intersex, PICK A STRUGGLE !!!!!!

[tfem-confessions]

My friend (they/them) has hyperandrogenic PCOS and wants to know if they can identify as transfem. I've tried my best to search on the Internet for them, but there hasn't been much luck.

I saw this blog and thought that asking y'all might help. Thanks in advance for any help/advice!

I would say so! I'll put this up for other people to comment their thoughts too, though.

-🐺

[ipsogender]

Mesosex

EDIT 2023-11-23: the term has been revised to:

Mesosex: a person who has an intersex variation, but one which does not conform to perisex (non-intersex) ideas of what intersex is. For example, people who have intersex traits that are considered "mild", or who have variations such as PCOS Hyperandrogenism and Poland Syndrome.

Meso- for middle/in between, to refer to the state of being in between what the intersex community accepts as intersex and what the broader public (mistakenly) thinks intersex is.

More info on why the revision has happened: https://www.tumblr.com/ipso-faculty/734822362966540288?source=share

For archival purposes, this was the original post:

Mesosex: somebody who identifies with intersex people but not as intersex, and also feels perisex does not quite apply to them either. Meso- from Greek mesos (middle), to indicate that one feels in between having the intersex experience and the perisex experience. For example, people with reproductive disorders who feel they have common ground with intersex people but not so much common ground as to feel they are intersex.

There are conditions like PCOS and Poland Syndrome that exist on a spectrum from definitely intersex to perisex-ish, and I hope this term gives people on the perisex-ish side of the spectrum more useful word for themselves than the current language of "intersex-adjacent".

I want to be clear that people with conditions like PCOS and Poland Syndrome are completely entitled to call themselves intersex and that there is broad agreement within the intersex community that anybody with these conditions who feels they are intersex is intersex.

In coining this term I am hoping to validate and connect people who would otherwise call themselves perisex yet not feel it is quite accurate for them.

Mesosex people can have any gender, similar to how intersex people can have any gender.

In designing the flag our goal was to give an impression of something in between the intersex flag and cisperinormative gender colours whilst also including nonbinary people. The salmon background is chosen as a colour that is not quite pink, and the periwinkle ring is chosen for being not quite blue, but still reminiscent of the purple ring of the intersex flag. The white centre, put inside the purple-ish ring, is chosen to reflect how the nonbinary flag has white and purple in its middle.

The term and flag were workshopped with @scifimagpie. I had been thinking for a while that it would be useful to have a term for people who feel in between intersex and perisex, and these recent posts by @queercripintersex on identifying with rather than as not only convinced me there is actually an audience for such a term but also inspired me to get this done! PS. If you are questioning if you are intersex, check out this post by @intersex-support with a big list of intersex media, which you can use to get a sense on whether you resonate with intersex experiences. (Also check out their FAQ! And their past posts! They're really great!)

[menacewithawolfcut]

so, i think i might be aro-spec, actually… and I’m not exactly sure what to do with this information, but the more i question things about myself, analyse my past and deep dive into the topic, the more sense it actually makes

[queercripintersex]

I’ve seen people discuss that PCOS is possibly an intersex condition. I can’t seem to get a straight answer from google, so I think it’s like a “some doctors say yes, some say no” situation. I’m not 100% sure what I think about it, but I want to know if I can interact with your polls as someone with PCOS? If not, that’s totally understandable!

All forms of hyperandrogenism are intersex. That includes hyperandrogenism attributed to PCOS. If you have hyperandrogen PCOS and feel intersex applies to you, try on the label and see if it fits you. Hang out in intersex spaces and get to know other intersex people. <3

Not everybody with PCOS has hyperandrogenism. There's some legit ambiguity about where the people with PCOS who don't have hyperandrogenism fall. (Personally: what matters is participating in the intersex community and seeing if the label sticks upon immersion, not any given diagnosis.)

I wanna point out that doctors have a terrible track record on speaking about intersex people and have a very long history of failing to listen to actually intersex people.

Who is and isn't intersex is a question for the intersex community, not doctors. And we intersex people are unanimous that PCOS counts as an intersex variation. Lest you think this is some weird tumblr phenomenon, InterAct includes it in their list of intersex variations.

In every intersex community I've followed I've seen the PCOS question come up again and again and intersex people are consistent that it counts.

The only people who don't want PCOS to count are anti-trans people who can't stand the idea of sex variation being common, and doctors who think they know better than intersex people (including intersex doctors).

I hope that helps understand the situation! If you want to learn more about PCOS as intersex, intersex-support has answered a lot of asks on the topic. <3

[kirbyofthestars]

sorry if this is intrusive or out of your expertise but can you have pcos without being overly hairy? because my periods have been irregular to the point that I needed to take birth control to stabilize them

yeah! hirsutism is just one potential symptom of it

[anxietycreation]

I never realised how much the hyperandrogenism caused by pcos actually impacted me. I've honestly never paid that much attention to what people's bodies look like and my only real idea of "normal" was myself.

I never realised that my body hair was thicker or darker than a perisex cis woman's typically is. I never realised it was growing in areas different to theirs either.

People often commented on my voice when I was talking on the phone but typically said I sounded tired because my voice would be a bit deeper, usually because I wasn't putting on a higher pitch. At the time I didn't know this was what I was doing and I still raise the pitch of my voice to seem friendlier.

I didn't realise that my periods were so different to what they should've been and that the amount of pain and blood was abnormal. I didn't realise that frequently skipping 1-3 months wasn't normal. I only realised something was different when it had been over six months without a period.

But I'm also the person who didn't realise that not being able to breathe through my nose was anything to worry about either so I'm not exactly the most observant 😂

[dhddmods]

so, I had a question about being intersex.

so I’ve been questioning being intersex for a while but it’s only really become more prevalent recently and I wanted to get other(?) intersex people’s opinions on it.

so I’m mullipatherian except due to hypothyroidism my body produces too much testosterone (I think that’s called hyperandrogism?). It also mimics symptoms of PCOS which i may have but that’s another can of worms. So I guess my question is would you consider that intersex?

Hi! That is most definitely not mulleripathian. If your body is producing high levels of testosterone naturally, that is intersex.

If you've read our intersex guide (you really should if you haven't yet!) you'd see that hyperandrogenism (including hyperandrogenic PCOS) is an intersex variation.

Here's a copy and pasted version of the hyperandrogenism segment:

Hyperandrogenism: A trait in which an individual has high levels of androgens. If they have ovaries, this describes having higher levels of androgens than mulleripathians do. If they have testicles, this describes having higher levels of androgens than wolffipathians do. As a lone variation, this comes in both an XX form and an XY form. In 80% of cases the XX form is caused by Polycystic Ovarian Syndrome (PCOS), a genetic condition that causes the ovaries to overproduce hormones, which may cause cysts to develop on the ovaries. Those with the XX form have XX chromosomes, a vulva or clitoromegaly, two ovaries, and a uterus. During puberty (without the influence of HRT), they will either have estrogen and androgens at near-equal levels, or have androgens as the main sex hormones, and will likely develop increased body/facial hair, higher muscle mass, and a deepened voice, with the possibility of breasts and widened hips. If androgens are their main sex hormones, they may also have hypoestrogenism, meaning their estrogen levels might be lower than mulleripathians. Pregnancy is possible, however they are at a higher risk of infertility. Those with the XY form have XY chromosomes, a penis (possibly a macropenis), two testicles (possible with macroorchidism), and a prostate. During puberty (without the influence of HRT), they will have testosterone as their main sex hormone (though it will be high), and will likely develop increased body/facial hair, higher muscle mass, and a deepened voice. They may have hypoestrogenism, meaning their estrogen levels might be lower than wolffipathians. They may be capable of producing sperm, but are at a higher risk of infertility. The XX form is extremely common, occurring in 5-10% of AFAB people. The XY form is rare. Common traits and disabilities that may co-occur include an early puberty (which may lead to a shorter height than average), oily skin, higher levels of acne, a high libido, bald patches, high blood cholesterol, diabetes, behavioral disorders, mood disorders, and anxiety disorders. Familial Male-Limited Precocious Puberty (FMPP)/Testotoxicosis is an extremely rare form of the XY form of hyperandrogenism, where puberty-influencing androgen production begins extremely early, causing puberty to begin between the ages of 1-5 years old.

So TLDR; yes, you are intersex if you have hyperandrogenism!

The only time it's not intersex is when its from an androgen-producing/androgen-disrupting tumor.

[yourfaveisintersex]

Haruka Tenō / Sailor Uranus from Sailor Moon is intersex, and her variation is Polycystic Ovary Syndrome (PCOS) with hyperandrogenism!

[newtscamandersbf]

tboys w hyperandrogenism wya make some noise 🗣️🗣️

[ipso-faculty]

Compiling some terms/posts useful for people questioning if intersex

Note: If a definition in is in quotes, the source material it is quoted from is linked to by the relevant term.

Highly relevant terms

Extersex - "[A] term for those who do not know whether they are dyadic or intersex. It could be because one feels as though they might be some form of intersex, but are unable to medically confirm it, or cannot confirm what intersex variation it is. It may also be for those who have a variation that may be considered intersex, but are uncertain if they want to identify as intersex." - @themogaidragon

Inter-Questioning - "a term for anyone who is questioning if they’re intersex, for any reason. (Whether it’s due to one’s physical body, familial experiences that imply one is, or possibly simply a mental feeling that one is intersex.)" - @eldorr

Quoisex - "[An] umbrella term for anyone who doesn't quite understand their sex or doesn't want to define their sex." - LGBTQIA+ Wiki Note: I understand this as more general than extersex, and would include people questioning if altersex. See the wiki entry for subtypes (quoigonadal, quoichest, etc)

Altersex - "An umbrella term to describe having or wanting primary or secondary sex traits/characteristics that do not align with the binary sex model that a significant portion of society has adopted. It is primarily used by those who are not intersex and are trans+ and wish to or transition specifically to have a body that does not fit the aforementioned sex model." -@intersex-questions Note: Being altersex does not make somebody intersex. I include it because many people questioning their intersex status realize this is what they're looking for.

Anisohormonal - "Aniso (unequal/uneven) + hormonal (relating to hormones). An individual who has an imbalance of hormones for any number of reasons. Such individuals may or may not also be intersex." - @sproutflags Note: includes non-intersex variations such as diabetes.

Subtypes of intersex people

Note: In my experience most people questioning if they're intersex have a hormonal intersex variation like PCOS, so I'm skewing towards this accordingly.

Dysgonadal - "[having] dysfunctional gonads. This includes agonadal (no gonads) and hypogonadal. Also known as gonadal agenesis/dysgenesis, dyssex and nullogonadal/asexed (null sex or avaginal/aphallia)." - @arco-pluris Note: contrasted with eugonadal - "people with functional gonads (reproductive cells). Includes hypergonadal (hyperfunctional gonads)"

Interhormonal - "Someone who is intersex and anisohormonal and/or feels that being intersex has impacted their identity as anisohormonal in some way and/or that their identity as anisohormonal has impacted their identity as intersex in some way." - @sproutflags

Intermeer - "a term used to describe all intersex variations that are caused by an overproduction of horomones (testosterone, estrogen, or both.)" - LGBTQIA+ Wiki Variations include: AES, FMPP, PCOS. Part of The Autre System for categorizing intersex variations.

Intermindre - "a term used to describe all intersex variations that are caused by a lack of horomones (testosterone, estrogen, or both.)" Note: The wiki lists AIS and EIS as examples although they are not due to a lack of hormones, but rather a lack of sensitivity to them. Part of The Autre System for categorizing intersex variations. See the wiki for more subtypes. Thank you to anon asker who pointed out the AIS/EIS issue.

Mesosex - "[A] person who has an intersex variation, but one which does not conform to perisex (non-intersex) ideas of what intersex is. For example, people who have intersex traits that are considered "mild", or who have variations such as PCOS Hyperandrogenism and Poland Syndrome." - @ipso-faculty

More intersex terminology

Intersex Terminology Masterpost by @intersexfairy

Edits: - 2023-12-13: corrected AIS mischaracterized as lack of hormones, ty to anon for correction - 2023-12-13: added interdynamic - 2023-12-20: added inter-questioning, thank you @fazbears-horror-attraction for sharing it! - 2023-12-21: removed interdynamic. Apparently "secondary sex" means something entirely different in omegaverse. Ty to anon for correction.

[vamptastic]

saw a post of someone unironically claiming there is some large conspiracy of cis women with PCOS identifying as transfeminine... so out of touch. ime the vast majority of people with PCOS are cis women who are offended to even be considered intersex. online spaces focused on PCOS are kinda transphobic and mostly focus on weight loss and restoring your natural (read: female) hormonal balance and whatnot. like sorry but the vast vast majority are not doing that. and i trust the few ones who do to have a legitimate connection to the term.

[lesbian-lady-bird]

For me, being nonbinary and intersex means that I have dysphoria over being too masculine and too feminine. I don’t like having wide hips, and I hated having big boobs before I got a reduction. Sometimes I wanna be flat. I also don’t like having facial hair, acne, and more body hair than most guys. I don’t really know anyone else who’s experienced this.