#it’s not that I think everyone diagnosed with pcos is intersex

[intersex-support]

Hi! Questioning intersex here, kinda leaning on the side of “not intersex but still relates enough to the community to be curious and either way would want more resources on supporting intersex people.” I have PCOS, and my testosterone is higher than average. However it’s not so high that I appear particularly “not feminine” (eg having a beard (I have wispy things on my neck but not like an actual beard), different distribution of body weight, other stuff that testosterone does). I also feel like I was kinda forcibly feminized in a way? If that makes sense/is the right terminology? I had precocious puberty and people (2nd and 3rd graders, they weren’t trying to be hurtful but still) would always comment on my breasts and weight and acne, and I kept hearing people calling me “girl girl girl” and only focusing on the ways puberty made me more feminine, while never noticing the effects testosterone on me (I’ve had more leg hair than my (very hairy) dad since age 8 lol). Plus ever since I came out as trans, the people I didn’t hide my puberty from still misgendered me all the time so????

This is very long sorry so I guess what I’m trying to ask is I do have a thing that I’ve been seeing intersex people saying counts as intersex, but I don’t present in a way that other people respond to as anything but perisex, and if there’s any resources on stuff like this that you have I would appreciate

(also seriously sorry this is a very very long run-on sentence lol)

Hey anon,

Thanks for reaching out.

From my perspective, you are absolutely welcome to identify as intersex, and that the intersex community is your community. Major intersex organizations like InterACT, InterConnect, and tons of organizations globally all welcome people with PCOS as intersex. At the US national intersex conference this summer, I went there and met a ton of people with PCOS at the conference, and no one debated whether or not they were "intersex enough"--they were just valuable members of our community who have their own perspectives and intersex experience.

One beautiful thing about the intersex community is that intersex is an umbrella term for so many variations and experiences. There is no one intersex experience, and even within diagnoses, there is so much diversity in terms of what our lives look like. Some of us grow up our whole life knowing that we're intersex, while others find out in puberty or adulthood. Some of us are "visibly" intersex and experience what it's like to have visible sex traits outside the binary, while others of us have less visible traits. Some of us have a lot of interactions with the medical system, while some of us have very little medical intervention. All of these are real and important ways of being intersex, and one of them isn't "more intersex" than another.

The things you've described in your ask really resonate with me as things that I've heard a lot of other intersex people talk about. Your experience with high testosterone, the way other people react to puberty, sex characteristics, and your body are things that a lot of other intersex people can relate to. It makes a lot of sense to me that you would feel like there were ways that you were feminized coercively and forcibly, and I think that is a really key example of ways that societal intersexism can still affect us even if we aren't read as intersex by everyone in our lives. Even if people perceive and respond to you as perisex, your experiences are still shaped by your own internal knowledge, identity, body, and history.

Of course, you are under no pressure to label yourself any way that feels uncomfortable to you, or start participating in ways that feel overwhelming. You are the authority over your own life, and can use what terminology feels the most helpful and resonant for you. But know that the intersex community is here for you in whatever way that looks like for you. Some resources that might be helpful: Is PCOS intersex Video by Hans Lindhal, another article by Hans Lindhal, and this article by Gillian Giles.

Sending love and solidarity, anon <3

#intersex #actuallyintersex #pcos

[hiiragi7]

We suspect that we are intersex- won't get into the specifics of our complications or the variation we think we may have. We know for a fact that our parents were considering putting us on hormones as a kid as well. We were purposefully shut up in appointments as a kid by our parents when we tried to talk about anything related to what we suspect.

I was wondering if you perhaps knew of any resources for people who don't know what kinds of appointments may be necessary. Or just that can be helpful to intersex people in general. Sorry if this is inappropriate- we just have been trying for months to find someone who knew of good resources or similar and perisex people have constantly been pushing us aside. (you don't have to answer this- you can just tell us to fuck right off or ignore this as well).

I really should just get to making that intersex resources carrd I was planning to make... I keep putting it off.

The only resource I have on hand right now is InterAct, but I encourage anyone who has more to add on.

I get this question frequently, though, and having been through the diagnosis process myself, I can give you advice on that part.

Firstly, you'll want to make a list of all your symptoms, even ones you think are unrelated (ex. heart issues, joint problems, musculoskeletal issues). List ALL of them. Your doctors will not be getting the full picture otherwise and many intersex variations cause a wide range of symptoms unrelated to sex, and many variations also have higher comorbidity rates with certain disorders that may give your doctors insight as to where to start. If you are unable to see a doctor, you should probably still make a list so that you can compare your symptoms to your research.

I also recommend making a list of historical symptoms (symptoms you had in the past but no longer have). I'd also write down what your puberty was like, what age it started at, and any other details that stick out (Such as your parents wanting to put you on hormones as a child and the silencing during appointments).

You can also try requesting your medical records, though this won't always give you answers (A lot of doctors will leave details related to being intersex out on purpose).

After all this is done, you'll generally go through this process:

Primary -> Gynecology/Urology -> Endocrinology -> Genetics

Not everyone follows the same process, some people start with endocrinology for example, and a lot of people have to go back and forth (ex. Gynecology -> Endocrinology -> Gynecology -> Endocrinology -> Diagnosis). But if you're looking for where to start on appointments, you can use this as a guideline.

Generally, your primary provider will look at your symptoms, potentially order some basic blood tests, and refer you to one of the other specialties (Usually they start with Gynecology/Urology to rule out obvious physical causes and for radiology, you'll likely have to do some ultrasounds and physical exams).

Gynecology/Urology will likely be a lot of describing your physical symptoms to the doctor and being physically examined. In my experience it's a lot more based around scans, MRIs, physical exams, and symptom history intake than specialties like Endocrinology. Important to note with this specialty that you are always free to refuse a test or stop a test if you find it too anxiety-inducing or painful for you, because they will be in sensitive areas.

Also, if you have a uterus/ovaries, be sure to read up on how many adrenal disorders involve ovarian cysts, because they will try to diagnose you with PCOS if your scans show cysts and that may not be an accurate diagnosis. Make sure they are ruling everything possible out before considering PCOS. NCAH appears very similar to PCOS and commonly comes with ovarian cysts.

With Endocrinology, you'll likely be doing a lot more blood tests. Expect a lot of "It could be this, go get these tests, see you back in 2-4 weeks."

If everything else fails and nobody else can figure anything out, you may be referred to a geneticist - However, if you aren't recieving fertility counseling, many doctors won't really want to refer you to them. It's also important to keep in mind that this will only give potential answers if you have a genetic variation, which not everyone does.

If the geneticist can't find anything, you're back to Endocrinology again. You will have to keep pushing them, ask them to ask their supervisors about your case, switch endocrinologists if you need to. It may be a bit of a long journey, but if you're so symptomatic that your parents acted the way you described, you do likely have something going on and you have a right to know this information about your own body.

Long post, I hope this helps as a starting place.

#intersex

[andiv3r]

So, I'm gonna talk about some trans things, periods, body hair & PCOS below the cut, because it's on the brain and I needed to get it out there. So scroll if you don't wanna read.

It's very likely that I'll be diagnosed with PCOS soon. I've already brought it up with my doctor, and she finds it very likely, given all the signs I'm displaying, that I have PCOS. The signs she focuses on especially are surrounding my menstruation¹, body hair², and voice³. This does not surprise me, given how much research I've done on PCOS in the past few months, and how with each new sentence I read, it was like a new piece of a puzzle clicking into place. Of course my mind never felt like a woman's mind, but my body never felt like it fit everyone else's definition of womanhood either, and until now, I didn't know why. I wasn't unhappy about it, but it was hard connecting with other afab people when I would describe things I experienced, and they would tell me that wasn't normal.

When my mom heard this, her initial reaction was not to believe it. She was reluctant to listen to even more information about my gender that didn't fit the idea she had of me when I was a child of a normal cisgender female. Now, her reaction is to think that maybe, if this is true, then the doctors can "fix" it, and "fix" me. She appears to be under the impression that if the doctors change the hormonal makeup of my physical body, it will somehow also change my mind about my being a trans man. This worried me.

I know that forcing me into hormone treatment is not something she can legally do, especially not while both I and my father would vehemently oppose it, given that it would be detrimental to my mental health to force to, essentially, transition opposite the way I want to. While thinking this over, though, and after assuaging my fears about my mother with the knowledge that she can't force me to transition that way, it hit me.

That would be a transition. Making my body into society's idea of a woman body would be a physical transition for me, because I do not currently present that way. My current hormonal makeup does not match that. So, what would that make me? Surely I'm not allowed to call myself intersex, right? More Googling occured. I had been told by multiple people that it wasn't okay to refer to PCOS as intersexism, or claim that it fell under the same umbrella, or for people with PCOS to claim the term 'intersex' for themselves, which is the only reason I hadn't been using it despite the fact that this term, I feel, accurately describes my experience trying to relate to the gender binary and how my body always felt like it fell outside of that.

So I think what I'm trying to say... or ask, rather... is, is it appropriation of intersexism to call having PCOS a variation of being intersex? Most articles I've read as of this point say no, and that if my relationship to my body surrounding this condition feels most accurately described by that term, then it's fine, but for some reason I crave the validation of the Tumblr people.

¹My periods are extremely irregular, both in length and in rate of occurence, and it could be anywhere between two weeks to five months between periods, and they can last anywhere between two days and a month.

²I have a mustache, sideburns, a hairy chest and abdomen, hair on my hands and feet, hair on my chin, and anywhere else hair grows, you can assume I have it there, and a lot of it.

³I have a natural voice, without training, that is more reminiscent of a boy who has just hit puberty than an afab person who hit puberty six years ago.

#pcos #intersex #transgender #transmasc #andiv3r rambles

[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 stuff #biology

[religion-is-a-mental-illness]

This is textbook Judith Butler Queer Theory. Everything’s all about identities, inventing them (especially from mundane personality traits or medical conditions), constructing them and affirming them, specifically for the purposes of conducting identity politics. And explicitly “queering” (their word) everyone and everything.

If you don’t participate, you’re intolerant. If they’ve designated you as part of the thing, you’re a “traitor” to a thing you never had anything to do with in the first place.

For info on 47XXY Klinefelter Syndrome, and a better understanding of why the message is incoherent. see here: “Biology of DSDs (1) Klinefelter Syndrome”

An open letter to all organisations using LGBTQI+

Inclusion is a wonderful thing – and we should all want a world where inclusion is valued, and everybody can be part of public life and free to live without stigma.  However, inclusion should not involve erasing or misrepresenting the needs of marginalised groups of people, tokenising their existence, without trying to understand their needs – especially when their needs are diverse and complex and not easily boiled down to a single letter.

The I does not stand for Invisible!

So, I would ask all organisations adding the I, do you really understand what this stands for and are you really trying to improve the lives of people living with variations of sex development?  Or are you just adding the I because you think this is the best way to look “inclusive”, whilst ignoring their actual needs?

The I also does not stand for Ignoring needs!

I have written in detail about the term intersex https://differently-normal.com/2021/10/25/the-invention-of-intersex/?preview_id=292&preview_nonce=9f62da2a5a&preview=true and probably the first thing to note, is that the majority of people who are living with differences of sex development, do not identify as intersex, may not know the term is used to describe their medical history and may even find the term difficult or even stigmatising.  It is also increasingly common for people without a DSD, to identify as intersex, with even Polycystic Ovarian Syndrome being claimed as the most common intersex variation, even though most women with PCOS would never describe themselves as intersex and this is not officially recognised by any medical organisation.

So, when adding the I, who are you representing?

1) People without a DSD who choose to identify as intersex – or

2) those with a DSD, who may not use or even like the term?

By adding the I, are you erasing the needs of the most vulnerable, including newly diagnosed children and instead prioritising the needs of people who see “intersex” as an identity, for ever more spurious reasons?

So, let’s think about needs?

Surely any genuinely inclusive organisation would want to consider the needs of the most vulnerable as a priority – and when this comes to the I, surely this would prioritise the 0.2% living with complex differences of sex development.  Some of these conditions are listed below:

Klinefelter’s Syndrome

Turner Syndrome

Mixed Gonadal Dysgenesis (Mosacism)

Complete Gonadal Dysgenesis

Partial Gonadal Dysgenesis

Frasier Syndrome

5-alpha reductase deficiency

17-beta deficiency

Complete Androgen Insensitivity Syndrome

Partial Androgen Insensitivity Syndrome

Persistent Mullerian Duct Syndrome

Ovostesticular DSD

Congenital Adrenal Hyperplasia

Mayer-Rokitansky-Kuster Hauser (MRKH) syndrome

If your organisation does not know the names and does not understand the needs of people living with these complex conditions, are you in any way able to advocate for them?

Did you know that Turner syndrome can be associated with significant heart and kidney problems – or that Klinefelter’s can increase the risk of developing Type 2 diabetes or osteoporosis?

Does your organisation understand that girls with MRKH or Complete Androgen Insensitivity Syndrome, may find out as young teens that they were born without a uterus and with a short vagina and that this can impact on both fertility and sexual function?  Can you provide information about options for vaginal hypoplasia, which can include dilators and surgery?  Can you provide the psychological support needed to come to terms with this information?  Are you aware that she may find her bodily difference being described as “intersex”, incredibly difficult – especially if this is done as part of “inclusivity” training and without understanding anything about her needs?

It may be especially difficult for a young teen, to be faced with their bodily difference being described as neither male or female, as is frequently suggested by lessons using the GenderBread person.  Is this genuinely being “inclusive”, or is this using a vulnerable group of people without considering their needs – and without engaging with expert advice as detailed here. https://dsdfamilies.org/application/files/9116/3519/2768/July_2021_schools.pdf

Does your organisation know that every year in the UK, around 150 babies are born with complex genital difference?  This can be associated with a number of life threatening and life limiting syndromes and further investigations may be needed to determine the cause and in rare cases, whether best to raise baby as a boy or a girl? Do you offer support to new parents facing these issues, so that they are able to advocate for their children?  Are you aware that labelling these babies as neither male or female or a third sex, can increase the risk of unnecessary surgeries?  Do you provide funding so that parents are equipped with the skills to raise confident children living with different bodies?

Does your organisation know that one of the most common causes of atypical genitalia, Congenital Adrenal Hyperplasia (CAH), is a medical emergency and associated with the possibility of a life-threatening adrenal crisis?  Babies can develop arrhythmias, vomiting and dehydration shortly after birth and will need lifelong medication.  What support and information do you offer to these families – and does your organisation understand that the overwhelming majority of people with CAH, reject the term intersex?  Does your organisation understand that someone with CAH may be sitting in your “inclusivity” training and may be distressed by how you are describing their bodily difference?

When adding the I, without really understanding the I, are you misrepresenting the needs and bodies of people born with variations of sex developments and adding to public confusion?  Are you contributing to these conditions being weaponised and turned into memes that are used to discuss issues around sex and gender, without any genuine interest in needs?  Do you consider that there are likely people working in your organisation, who are living with these complex conditions and may find it traumatic to have their medical conditions misrepresented?

Most importantly, when adding the I, are you removing funding opportunities from the most at need – and are you preventing funding being available to meet the needs of those who are living with complex variations of sex development?

If by adding the I, you are genuinely wanting to improve the lives of people born with variations of sex development, we need more than just a hashtag – we need funding and services that prioritise our healthcare and psychological support.  If you genuinely want to be inclusive, do not misrepresent or ignore the voices of the people you are claiming to support – and do not add the I without first listening and understanding our needs.

If you are claiming to stand against interphobia and really want to end discrimination, please start by ensuring you don’t make the I invisible by ignoring our needs.

And finally, if you are serious about inclusion and your organisation really believes that we are more than just a hashtag, consider donating to our needs https://dsdfamilies.org/donate

==

Stop using intersex people as pawns in identity bullshit. Particularly when you don’t know what it means.

For more information about DSDs, aka “intersex,” see: “Biology of DSDs - Exploring the basic biology of eight congenital conditions of sex development.”

#Klinefelter Syndrome #47XXY #intersex #disorders in sex development #differences in sex development #DSD #Queer Theory #gender ideology #gender theory #queer #imaginary genders #vapogender #gender activism #gender identity #trans ideology #wokeness as religion #woke #wokeism #woke activism #cult of woke #religion is a mental illness

[genderkoolaid]

since we’re doing transandrophobia experiences!

this is more of a microaggression or seriously a moment of cis people not understanding gender but my cousin came to visit and i was obviously dressing masculine and my hair was presenting a little more on the masculine side (hair braided down, was wearing my favorite flannel and pants). and because i was wearing some earrings i made she said “well i think you’re actually pretty feminine!” hello. it doesn’t help that she is very feminine in presentation but also reacts poorly to me not wanting to do “feminine” things (like using lip balm? and wearing dresses?). the last time she visited (like 2016) she forced me to buy makeup at the store i didn’t really want. it was awkward and uncomfortable. looking back i think she was very uncomfortable with my expression

same cousin told me i need to wax my face to permanently get rid of facial hair, “it doesn’t look good, we can’t be having that” (because i have facial hair due to pcos, a chronic illness or intersex condition if we wanna consider that too. to be fair i wasn’t diagnosed then but that still doesn’t give her the right to judge other people’s bodies??). absolute shit show if i actually want on T i imagine

same cousin (i know.) told my family if they let me move in with her in another state i’d “return a woman” (she’d forcefully mold me into one), literally trying to convince my mother to allow that. i dodged a bullet

this one is probably typical of transmascs but my mother pulling me away from the men’s section (which is why i hate shopping besides being uncomfortable with trying in clothes before i knew what being trans was), telling me i couldn’t wear a suit to. a literal queer youth prom.

people (usually cis women) being very offended that you’re not over the moon about doing stuff they want you to do because you’re spoiling the fun if you don’t

being labeled a tomboy all my life and my family members patiently waiting for my “feminine side” to magically appear and replace it. like am i supposed to jump out of a cake or something? anyways me being trans has helped me feel comfortable doing all types of gender expression, turns out that forcing people doesn’t work! shocking

kids from my high school GSA always kind of leaving out the one trans guy that used to show up and he was the only trans man that ever did drop by. i feel sad looking back on it now i wish i’d connected with him more but i tried to make everyone feel welcome

every single instance of “men evil bad” preventing me from actually exploring how i feel gender wise until literally now because i don’t feel afraid of being masculine anymore for exterior and interior (internalized transandrophobic) reasons. still working on it though

Thank you for sharing your experiences.

#m. #ask box #experiences with transandrophobia #intersexist antimasculism #also i wish you good luck w exploring your gender i know how it feels to have spent so long repressing yourself #out of internalized transandrophobia

[menstits]

Penis

Honestly. I have pretty conflicted feelings about pcos. And I don't know if I'm allowed to think of myself as intersex by virtue of having pcos and I don't want to overstep because what i gathered is that it's a pretty contentious topic. But like... Getting it diagnosed really felt like putting together the dots in a way i should have probably realized way sooner. And this is specifically about MY own experiences I'm not trying to apply my personal feelings on this to anyone else's lives but like . Being able to put a name on why i constantly failed at "being a girl" the way it seemed to come naturally to everyone else was such a weird feeling like. I am transgender. I'm a guy and i feel secure in that knowledge. I don't think pcos made me trans that's a ridiculous claim. But having a body that never cooperated with me throughout puberty which made me fail at performing femininity in an acceptable cishet manner over and over did play a part in making me question whether that performance was something i wanted to have anything to do with when it was something that came extremely unnatural to me & that i seemed doomed to fail at. And like i got this diagnosis like what... A year ago? After my period skipped for five consecutive months. But even before then and even before coming to terms with the fact that I'm trans let alone telling anybody about it i still got treated throughout my teenage years by peers like not really a girl but something else and that kinda fucked me up honestly like even if it usually wasn't even mean spirited it was still so alienating. I know there's more factors to it than my fail hormonal development but it's still like. Man.

#🗨️ #just thinking about pcos sorry readmore cause it's long

[trans-axolotl]

hi! I was wondering if the acth simulation test and any kind of hormone tests are done routinely when you go to a gynecologist or if they have to be asked for? also if someone does do a test and is told they have high testosterone or androgen levels what exactly does that mean for them..? And if u did want to do these tests how do u get them done without directly asking and coming off as self dx (not that it’s bad!)? do u think if anyone has a gynecological concern like maybe endometriosis or something would they do a test like that without u even asking to help make the diagnosis and check for other things? also.. would u say a gynecologist would know a lot about things like CAH/NCAH and PCOS? are there any signs for being intersex when u are late to realize it?

hi anon!

So I can't speak for everyone's experience, but from my experience, hormone tests are not routinely done at the gynecologist. ACTH stimulation test is especially not routinely done. Usually, testing of any kind only happens if you have symptoms that you are going to the gynecologist for, and are not likely to just happen on a regular gynecologist visit.

Honestly, I can't think of any ways to get these tests done without asking for them unless you have symptoms that you're going to the gynecologist for (like heavy periods, body hair, thyroid issues, ambiguous genitalia, missing periods, or something else). If you don't have any symptoms, then gynecologists are unlikely to want to make you do any tests (there are also some complicated medical billing and insurance reasons for this depending on what structure your doctor gets paid through, but that's honestly not relevant.) If you want to get these tests done without any of these symptoms or any other medical conditions, you probably are just going to need to ask your doctor to do these labs.

I don't know enough about endometriosis to know what tests they do or not for general hormone levels, but I don't think having endometriosis would make them do really specific tests like ACTH stimulation. If anyone else who has endometriosis wants to chime in, that would be appreciated!

In general, I think most gynecologists are not experts on intersex. Gynecologists are likely to be more familiar with PCOS than CAH. Most gynecologists have probably seen patients with both of them before and probably are familiar with them, but I've also met many gynecologists who have never heard of NCAH. I think a lot of doctors are really not familiar with intersex unless they specialize in intersex care, and a lot of doctors only have a basic knowledge of diagnosis and treatment and aren't familiar with long term care. In my experience, it really depends on the doctor for what they actually know about intersex variations.

If you get your blood tested and find out you have high testosterone levels (hyperandrogenism) the next step is usually to figure out why your levels are high. There are several reasons why that might be, and not all of those are caused by intersex variations. Hyperandrogenism can also be because of Cushing's syndrome, medications you're taking, or in rare cases ovarian tumors. If you have hyperandrogenism and none of those other things, that usually means that you have an intersex variation. If you get a diagnosis, doctors will usually offer you medications to lower your testosterone levels (if you're afab) and possibly other medications like birth control, acne cream, and other treatment options for hair growth. If you get diagnosed with NCAH, you probably will get referred to an endocrinologist. If you aren't able to figure out the diagnosis, the next step is probably more testing to try to diagnose what intersex variation you have, and you might need to do genetic testing.

In terms of realizing that you are intersex late in life, you might notice signs like the symptoms of PCOS and NCAH. You might also notice weird discrepancies in your medical record, or unexplainable scars. Outside of having symptoms, the way that most people I know who figured out they were intersex in adulthood was actually through a coincidence when they were getting chromosomes tested for something else. (You can get this done privately through online companies, but it gets pretty expensive.)

Other intersex people, please feel free to add on with anything you think is relevant!

#asks #actuallyintersex #intersex

[cannabiscomrade]

How did you and your husband decide it was time to have children? I'm struggling right now between wanting for us to have kids a little younger while some of the older relatives are still around, and having a bit more overall stability. I'm not sure what is right or if there even is a right answer. Thank you!

I really don’t think that there’s a right answer that applies to everyone, ya know, but I’ll try to hit a lot of points here.

For us, a lot of it came down to the medical constraints I have on my fertility. I was told at 16 when I was diagnosed with PCOS that I might never conceive on my own. I did my own research and found that while it wasn’t exactly true, it can be extremely difficult for intersex folks with PCOS to conceive, and the earlier in your life that you can, the better pregnancy outcomes you’ll have. I was faced with deciding to start trying NOW, or risk never being able to.

I think it’s important to start thinking about factors that affect your fertility and the method you’d want to use to conceive, whether or not that’s gonna be sooner or later. Some people who planed on having children in their 30s end up having to change their plans because they find out they have a low ovarian reserve, or they find out they’re having anovulary cycles. Some people have to discuss pre-conception concerns with perinatologists because they find out they have a septate uterus, or they find out they’re a carrier for a genetic condition, or they’re intersex.

Stability is absolutely important, but it’s also vague and often culturally defined. What’s more important is whether or not you know how to provide their emotional needs and foster their growth, physically and mentally. I helped raise my nephews and I went into the child development field, and Frank worked as a swim instructor and coach to learn more about children and practice interacting with them. These are things we had to learn and practice, but like, if you have grown up with younger children, or work as a caregiver/teacher already these may be skills you already have. Think about your parenting philosophy now, and if you don’t have one, start looking into them. I personally follow Gentle (Evidence-Based) Parenting and if you follow me, you probably would too.

And then there are obvious factors like financial readiness. We are blessed that we are a multi-generational home and don’t have to worry about paying for childcare/preschool. Unfortunately, childcare cost is the reason a lot of people are holding off on having kids, and the reason that stay-at-home parenting is on the rise. And I’m wholeheartedly supportive of SAH parents (I’d love to be one) but it’s not for everyone. And controversial take- finances shouldn’t bar someone from having kids, especially when they can change at any time. I think my biggest concern with regards to finances is the childcare aspect, because I’m assuming if you’re starting to wonder if you’re ready to have kids that you’re able to attain their basic physical needs, so I won’t lecture you on that.

I really don’t think there’s ever going to be a perfect time to have children, but there are things you can do to make sure you’re ready to have them, if that makes sense. I wish there was a checklist I could give you so you could check all the boxes and be confident that it was time! But there’s always gonna be something you missed and that’s okay.

#parenting tag

[intersex-support]

Hey. I wanted to say thank you for sharing resources and making a space for intersex people on tumblr. I recently learned just how much PCOS or incorrectly diagnosed NCAH is an intersex condition and how much its intersex health/social effects impact me. Birth control as HRT hasn’t done anything positive for me, and I feel serious dysphoria with anything womanhood related; I have a HRT consultation to start T and I’m hoping it will make literally anything more bearable. Vent and request for advice below.

Do you have any words of advice or encouragement or resources for intersex and intergender/nonbinary people with bottom growth? Phalloplasty is likely not in my future due to cost and surgery complications/risks from my connective tissue disorders, and Every other resource I find is so catered to perisex binary transition, that I can’t sort out what is even applicable to me. I’m seriously feeling a lot of grief and hopelessness about how undesirable small dicks and “needle dicks” are, and I feel like my only hope is being an ugly misshapen woman, an ugly misshapen man, or a nonbinary/intergender person trapped with dysphoric and shitty insensitive genitals.

Thank you for your time and much love to everyone. I hope everyone is doing okay.

Hey anon! Sorry this ask took a while to answer.

I just recently answered another ask with some resources about PCOS and T--there unforuntately aren't a lot of resources, but the ones I have are there. The summary is basically that plenty of people with PCOS or other hyperandrogenic intersex variations regularly go on T without major health complications.

What I will say is that everyone's experience is unique, but that there are many intersex people I know, (including myself!) who feel really happy, satisfied, and affirmed with the changes our bodies have made on T. There isn't really any resources or way to tell for certain how changes will happen or not, but from talking with other intersex people on T, what we've noticed is that we seem to be generally getting all the same changes that perisex people get on T, just on a different timeline or to a different degree. And for most of the people I know, that's included bottom growth in a way that many of us have found affirming. I wish I could give you a resource that would tell you with more certainty what would happen in terms of bottom growth if you went on T, but unfortunately, that's not something that exists for us yet.

Content warning for more genitalia and sex talk.

I don't want to downplay your fears--I think that as an intersex person, it's really easy to internalize the negative messages that society tells us about the the "right" type of genitals. And it is absolutely okay to take time to grieve the body we wish we could have, and acknowledge the very real ways that dysphoria impacts our life. Your feelings about all of this matter, and deserve to be listened to, and you don't have to put on a happy face and pretend that you feel a ton of self-love about your body if that's not your experience.

.When we live in a world that's telling us basically from the day we're born that there's two right sets of genitalia and anything else outside of it is something that we should hate and fear, it's really hard to conceptualize the fact that there are many, many people out there already living happily with our genitalia that falls outside of those two boxes, whether we have a vagina + a large clitoris/small penis, whether we just have a small penis, whether we have any combination or variation of genitalia--we are already out here, naturally existing, navigating love, sex, desire, and pleasure. Having a large clit/small dick would not be a death sentence or mean that you can't figure out ways to have fun, pleasurable sex if that's what you want, and although I understand how fucking frustrating dating and sex can be as intersex people, I promise that there are people out there who genuinely desire us and will embrace us no matter what our genitalia look like.

We live in an interphobic society founded on ideas of compulsory dyadism, and that means that every day in a million small and big ways, we're told things like that we're disgusting, or a freak, for having the genitalia and hormones that we do. But that is not true, and as intersex people, every day that we survive, every day that we take steps towards embracing our bodies, every day that we make our own choices about what hormones and medical interventions we want, every day that we leave room for intersex pride is a day that we're able to stand up against a society that doesn't want us to exist.

I can't tell you what is the right decision to make--you're always going to be the expert on your own body, and know what feels right in terms of your wishes, your dysphoria and your own relationship with your body. But just know that no matter what you decide to do, even with things that right now might seem like a worse-case scenario, there are intersex people who are finding ways to feel at home and figuring out what does work to bring them joy, and that those things are always possibilities for you, too.

Truly sending a lot of love your way, anon--I know how hard being trans and intersex is, and navigating these things on so many different levels. Please feel free to reach out again for support, to vent, to ask questions--whatever you need.

-Mod E

#genitalia talk tw #sex ed #actuallyintersex #intersex #trans #intersexism tw #interphobic language tw #ask to tag #im hoping the tags ive used make sense for people's tag filtering #so that people who don't want to see posts talking about genitalia sex or transition #can filter them out

[intersexfairy]

Finding out you're not intersex when you thought you were does kinda suck though. I suspected I had high testosterone because I had a lot of the symptoms of it (including gender dysphoria, an undocumented but common symptom). When I got my PCOS diagnosis my doctor ran an androgen test and it came back normal and I was like "well shit". I still have all the inconvenience and medical bullshit of PCOS but with none of the solidarity of being intersex.

Intersex people and people with reproductive-related things are still allies! I know it isn’t the same, but we’re still here for you. I don’t think anyone would have a problem with you finding support in the intersex community (unless they’re a gatekeeper, but fuck gatekeepers). In the spaces I’m in, there have been dyadic people who came for support and as far as I can tell it was fine. I obviously can’t speak for all intersex spaces/people though. I’m just one person afterall.

But just like how cis intersex people will find comfort in the trans community when people aren’t being intersexist, non-intersex people with similar experiences to us irt the way the system treats them are welcome to find solace with us too. Inter-group solidarity still exists ^_^

It’s like that in a lot of LGBTQ+ communities afterall, isn’t it? Groups existing in solidarity with each other, helping each other out, building connections & relationships. Not all intersex people identify as LGBTQ+ of course, but intersex people (allocishet or not) have been involved in the community for ages.

The values involved in intersex activism go beyond just us. It’s for everyone to have their body and gender respected regardless of what those two things look like for them. A lot of doctors are very misogynistic & transandrophobic when it comes to PCOS, causing them to mistreat people with it, and that’s a real valid problem that deserves support.

I know PCOS spaces can be very uninviting for some people, esp. LGBTQ+ people. So honestly if you ever need anything, I’m here. I’m diagnosed with PCOS too, even though whether I have it or not is another story.

#anon #asks #interasks #pcos

[doberbutts]

Do you think PCOS counts as intersex? The common argument I've heard is that it can be treated by healthier/less stressful lifestyle.

A quick google search says that it's possible, and that most intersex awareness/support organizations would not gatekeep someone with PCOS from claiming the term for themselves if they have certain symptoms.

As with all medical diagnoses, just because you're diagnosed does not mean you have specific symptoms, as everyone's body is different. Some people with PCOS have very high levels of androgens (male hormones, including testosterone) without being on T therapy. This does result in a masculinizing of the otherwise-female body- ambiguous genitalia, smaller breast tissue, body and facial hair, male pattern baldness, disruption of menstrual cycle, deeper voices, Adam's apples, bone structure and muscular changes- none of these are guaranteed symptoms but are possible with PCOS.

I know a trans guy who passes INCREDIBLY well and it's just because he has untreated PCOS. This actually Isn't Good because it led to him being really reluctant to investigate why he had these symptoms or undergo any treatment for it (because he WANTED the masculine traits it gave him) and delayed his treatment to the point where now he is at pretty high risk of other conditions due to him allowing things to remain as they were. Luckily, because his condition is so severe, he'll be able to get a hysto a lot easier than me, because his internal organs are just riddled with scar tissue at this point and must be removed. Please do not follow his example and deliberately neglect your health. He is paying for it with blood- quite literally.

But according to these intersex orgs, they would not protest him considering himself intersex, if they wanted, as his symptoms match mine despite having a different cause. At the same time, if someone with PCOS does not have these androgens causing masculinizing of the body, then they would not consider that person to be able to call themselves intersex.

[nonbinaryresource]

Ive ben questioning mt gender lately. I got diagnosed with PCOS and dealing with my body changing cause of strong hirsutism. And its not bothering me nearly as much as it should. Uthers think that the changes should nake me nearly dysphoric, and i just don't rely care. I even like some of it, my side burns are cool, i gain muscle faster, i want to try looking more butch. Idk what it means, am i NB, trans, just butch? (1/ 2)

Idk, i guess my question for you is this. is a lack of dysphoria about your body changing away form your agab, is that a trans/nb thing? Or am i just over thinking this. Sorry if this is to personal ( 2/2 )

There’s absolutely no standard of what you “should” or “have” to feel here. Everyone is different, and you’re allowed to simply feel your feelings. Others should be more supportive instead of trying to police or showing shock at your own personal reactions to your own personal journey.

And I can’t pinpoint an answer to your question, either - sorry! I don’t know if you’re nonbinary, otherwise trans, or butch and cis. Dysphoria or lack of dysphoria about body changes is not specifically correlated with any one particular gender or experience.

People like different things. We want different things. We are comfortable with different things. This could indeed mean that you are trans/nonbinary. Or maybe you really are cis and butch/gender nonconforming. All of these are certainly a possibility! Only you can answer this question, and it’s not as simple as plugging in numbers into an equation.

You’re doing a great thing by taking some time to introspect on your gender and think about how you feel! The way you’ll figure it out is by spending more time in these feelings and letting yourself really imagine being trans/nonbinary or a woman and see how each of these make you feel. The answer will be whatever you’re more drawn to. Whatever you feel more comfortable with. Whichever feels more right to you.

Since you mention PCOS, perhaps it would be beneficial to you to explore some intersex resources? It might also help you with this whole gender thing. I would start with @intersex-support and poke around @actuallyintersex (though they’ve been inactive for a while now).

~Pluto

#mod pluto #questioning #mod tera #anonymous #ask #answered #asked #nonbinary

[boobsandbravado]

I miss my testosterone.

This feels like a weird thing to say. I never really had the the excessive body hair growth associated with PCOS; I actually have the opposite. But I do have a deep voice that was once deeper. I have often felt masculine... As a child I wasn't sure if I might be trans. I'm not. I am a woman and I think I view myself as one but the older I get and the more I think about gender; I wonder what that means. It has been a journey to love my body and accept things like having a vagina or large breast. It never felt right to me... The way I went through puberty. I kept waiting for my hips to broaden... It never happened. My voice deepened. My periods were heavy and painful yet sparse and everyone treated me like I was crazy. Cut to many years down the road and I bleed for a year and officially get diagnosed with PCOS and endometriosis. I'm told I will struggle to have my own children. I haven't been ovulating. Both ovaries are Polycystic. Throw in the endometriosis and you might as well call me infertile. But at least it isn't fibroids! 🙄 Now, I'm sitting here wondering if I want a child as badly as I think I do or is it these out of whack hormones and high dose birth control. Idk. I'm rambling. Some people think of those who live with PCOS to be on the intersex spectrum and, while I don't feel it's my place to decide that, I can see where there's a case to be made. Some of us look androgynous. Some of us have beards. Many of us feel neither man nor woman or any other term or gender or agender. I'm just trying to figure out where I fit.

#thoughts #pcos #depression #endometriosis #intersex #pcosawareness

[intersex-support]

hi, i hope it's okay to ask tmi questions haha.

in short, do you think it's possible that i (34 afab, born in oklahoma if that make a difference) could have been operated on as a newborn without my parents' knowledge?

a bit longer: i've never been able to orgasm. i'm ace and on an SSRI so i don't have much urge, but any time i've tried, i've found that i just don't have a lot of sensation in my clitoris. it's not remotely like what other afab people describe.

i'm diagnosed with PCOS, tests have shown i have elevated testosterone and i have a number of secondary male sex characteristics. it wouldn't take much of a logical leap to imagine that i was born with intersex genitals and operated on, but i've talked to my mom about my hormones and everything, and i absolutely believe that if she knew i'd been operated on she would tell me. my father is an ass i don't talk to and don't trust, so it's feasible he could know.

sorry for the rambling ask, but the idea that i could have been operated on as an infant and had my capacity to experience sexual pleasure destroyed is... a bit upsetting. appreciate your time, thank you.

Hi, so I think it is totally possible that this could be the reason for being unable to orgasm, but it is only one of many reasons that could exist. I would say it's not unheard of that someone could experience surgery as an without the full consent of parents/guardians, but if they saw absolutely no signs of it while you were younger then it seems unlikely (if they changed you as a child they may or may not have seen something, I can't be sure, but surgery is surgery and it needs to be taken care of so it doesn't become infected and heals properly).

Inability to orgasm can have multiple other reasons, it's not unheard of for intersex people to have pelvic floor dysfunction, generally pelvic floor issues. The use and strength of your pelvic floor muscles affects the arousal/blood flow of the clitoris.

You mentioned being on an SSRI, that definitely affects ability to orgasm as well, but anxiety and depression themselves can also be a factor because they may cause tension, or create a mental blockage.

Basically, I would not stress too much about possible operation if lack of orgasm is your only clue. I would say generally looking into pelvic floor health is good for EVERYONE, so looking into it might be helpful for you. Understanding how muscle strength/stretching, nervous system issues, digestion, breathing/diaphragm strength affects the pelvic floor can help a lot of people long-term.

Surgery could be a possibility, and an extremely distressing one at that, but even if that is the case it might be helpful for you to understand the health and needs of your body in general, and know what capacity for pleasure you do have.

#mod stev #PCOS #surgery cw #igm cw #pelvic floor #ask to tag

[intersex-support]

hyperandrogegism anon here: so if i have borderline hyperandrogegism with pcos, would that “qualify” as under the intersex umbrella? i do have facial hair and irregular menstrual cycle and things like that but i was also on T for three years (now off for two years) and im just a little unclear on where the “line” is exactly.

sorry if this is an annoying type of question, i just wouldn’t want to intrude on the community if it isn’t actually something i should be claiming for myself

Honestly, I would absolutely welcome you. I'm not in charge of intersex community, but I think that if you have PCOS, you have some relationship and experience with hyperandrogenism--you're welcome to call yourself intersex. The clinical scales for hyperandrogenism are confusing, there's some debate in research about hyperandrogenism about what the best measurements are and what the cutoff is. So I feel like when that's the case, it really isn't worth it getting into a huge debate about like, what level of testosterone is high enough to count.

I think something that was helpful for me when I first was diagnosed as intersex was realizing that intersex is a broad umbrella term that describes so many different experiences. There is room for everyone and there is such a variety--something that's foundational to one person's experience with being intersex might be something that another intersex person doesn't experience at all. My experience with NCAH is not going to be the same as someone who has Turner's, or AIS, or ovotestes, or any of the 28 intersex variations. My experiences of medical abuse are something that have been really influential in how I understand myself as an intersex person, but that doesn't mean that I'm more or less valid than intersex people who never faced medical abuse. Intersex is an umbrella term for so many different experiences, and there is room for your experience with PCOS and borderline hyperandrogenism as well. Every intersex person who's participating in intersex community has the right to share our own experiences, and with that also comes the opportunity to listen and learn from other people and build our solidarity. I think that every intersex person has the responsibility to really listen to intersex people with different experiences than us and learn how to stay in our lane when necessary--that isn't just an experience that is specific to one diagnosis.

So basically: I can't tell you what to do and this is ultimately something you will have to decide for yourself, and it's okay if it takes some time to think through whether claiming intersex feels right to you. I would absolutely welcome you into intersex community 💜

-Mod E

#asks #pcos #intersex #actuallyintersex