Questioning if you're intersex: a guide for people who like protocols and processes
People can realize they’re intersex at any stage of life and there’s a fair number of people out there questioning if they’re intersex. There is no single right way to go about this process.
As an autistic person, I thought I would write up, in detail, ✨️ a Protocol ✨️to guide an individual through the process.
This guide is not intended to be The One And Only way to question, but rather a very structured way to do it for people (like me) who benefit from explicit, structured protocols. Not everybody is like me, and so this will not be for everybody. YMMV.
Overview of the different stages
This protocol has 8 stages, and each stage has a dedicated section below with more detail. The whole document is kind of long (sorry!) but questioning is an extended process and I want to be thorough.
Familiarize yourself with the basics. Make sure you don’t have any misconceptions about what intersex is, and learn the vocabulary used by the community. You may at this stage discover you’re not intersex, and so you do not need any further steps. (Congratulations on finding an answer!)
Familiarize yourself with different conceptualizations of intersex (e.g. medical model) and learn to recognize intersex exclusionism. It will be important for you to recognize exclusionism while questioning so that you can see it for what it is, rather than invalidation. This will involve some readings, provided in the section below.
Immerse yourself in intersex life stories. Intersex is not just a category of bodily variations, it’s also a category of social experiences that result from these bodily variations. If certain life stories really resonate with you, write down what intersex variation(s) these people have - it’ll be useful for the next step.
Identify at least two specific intersex variations you could plausibly have. Read about them. If you cannot identify any variations that you could plausibly have, this is another point at which you may realize you are not intersex.
Attend at least three meetings of intersex organizations. Explain you are questioning if you are intersex, and what variation(s) you think you may have. Importantly, listen to what the others are talking about and participate in the discussion. (Don’t make it all about you.) Many intersex organizations host online events regularly; this does need to be in person.
Ascertain what you would need for a diagnosis by a medical professional. I put this after the previous stage because you may need advice from intersex people with similar variations about how to get the right diagnostics. If these tests are not available to you, talk to people who have been diagnosed with the variation(s) you think you may.
Experiment, in safe spaces, with calling yourself intersex. Keep attending meetings with intersex people! See if you become comfortable with the label.
Keep at it. If you find yourself comfortable with the label, and have been using it for long enough that you feel confident you’re intersex, congratulations!
.💛💜💛.
Stage 1. Familiarize yourself with the basics.
First: confirm you have a strong understanding of what intersex means. Many people who question they are intersex wind up discovering they are transgender, nonbinary and/or altersex. Note it is possible to be both intersex AND trans/nb/altersex!
So it’s important to have a clear idea of what intersex is before you go any further.
Read/watch at least three of the following in their entirety:
InterACT's FAQ (text, about 16 pages)
The FAQ by @intersex-support (text, about 7 pages)
Intersex Explained YouTube playlist by Hans Lindahl (6 short videos)
This Tumblr thread about misconceptions about intersex (text, about 1 page)
Read all four of the following:
This post about transition goals (text, about 2 pages)
This post about terms for people who want a body that is neither male nor female (text, about 3 pages)
This Tumblr thread on “connection is not a feeling” (text, about 2 pages)
This post by satellites-halo about kindness for people who are misinformed about intersex (text, 1 page)
The intersex community has a bunch of specialized vocabulary. Here are some glossaries:
Basic glossary by trans-axolotl (text, about a page)
A longer glossary by intersexfairy (text, about 3 pages)
Intersex Wiki's Glossary (text, about 9 pages.)
It is important at every stage of the journey to consult SEVERAL intersex sources. There is no singular authority on intersex. While there are many issues you’ll find broad consensus on (e.g. PCOS is intersex), we don’t all agree on everything. Some sources have known issues or limitations, and that's another reason to consult many different sources, to make up for the individual limitations of each source.
.💛💜💛.
Stage 2. Familiarize yourself with different conceptualizations of what intersex is
There are two major divisions within the intersex community that you should be aware of before going further:
The divide between intersex who view intersex through the medical model (intermedicalism) and those who do not.
The divide between intersex people who are exclusionist (i.e. have a very narrow view of who is and is not intersex) and who are inclusionist.
Often, but not always, intermedicalism goes hand-in-hand with exclusionism. Learning what intersex exclusionism looks like is vital for people who are questioning, so that you can recognize it for what it is and not as invalidation.
Models of Intersex
Like with disability, people tend to understand intersex through the medical model rather than non-medicalizing alternatives like the social model. Research has consistently found that moving past the medical model is vital for developing a positive sense of intersex identity (Davis, 2011; Viloria, 2017).
Read at least one of the following:
Intersex Wiki: Models of intersex (text, about 5 pages)
Costello, Cary Gabriel. "Intersex and trans* communities: Commonalities and tensions." In Transgender and intersex: Theoretical, practical, and artistic perspectives, pp. 83-113. New York: Palgrave Macmillan US, 2016. (peer-reviewed book chapter, 32 pages) -- this is more detailed, but I think it's worth it!
I think that it’s also very important for questioners to move past the medical model. Unless you are having acute symptoms that are a medical problem for you (e.g. infertility, chronic pain in the groin area), physicians are unlikely to resolve your questioning for you. Physicians are generally resistant to investigating intersex diagnoses without a medical reason for it. If you’re questioning in order to understand yourself (and/or your gender) better, what you have is a social problem, not a medical one.
Recognizing intersex exclusionism
There are a few different ways in which intersex people can be exclusionist:
First, some intersex people think a diagnosis is required to be intersex. This is straightforwardly intermedicalist. My experience is that these people also tend to be classist, and take access to understanding physicians for granted.
Secondly, some intersex people have very narrow views of which kinds of intersex variations “count” – usually they accept ambiguous genitalia and ovotestes as intersex, but the further away from that you get the less likely they may accept it.
Extreme exclusionists may reject variations like MRKH (Müllerian agenesis), Turner Syndrome (Monosomy X), and Klinefelter Syndrome (Trisomy XXY) as intersex.
Milder exclusionists may reject variations like PCOS-hyperandrogenism and Poland Syndrome, which are associated with variations in the secondary (and not primary) sex characteristics.
Milder exclusionists may reject traits like gynecomastia, distal hypospadias, and hyperandrogenism as intersex simply because they are common. Physicians tend to be very invested in the idea that intersex must be rare, and resistant labelling anything somewhat common as intersex.
There is often a gender dynamic in exclusionism: male-associated genital variations like micropenis, cryptorchidism, and hypospadias are less likely to be understood as intersex than comparable female-typed variations like clitoromegaly, uterine agenesis, and vaginal atresia.
There is also a racial dynamic in exclusionism: nonwhite people are more likely to be “rounded up” to be intersex and white people are more likely to be “rounded down”. An exclusionist who claims that hyperandrogenism isn’t intersex will often still consider black women with hyperandrogenism to be intersex (see: Caster Semenya). There is a long history of eugenics shaping medical understandings of intersex.
Again, this tends to be influenced by intermedicalism because these individuals are deferring to how physicians define intersex, rather than how intersex people define intersex.
Thirdly, some intersex people are resistant to transgender/nonbinary individuals identifying as intersex. While sometimes this is simply transphobia, there is a long history of trans/enby folks making dubious claims to intersexuality (see the Costello paper for more). Many intersex people have heightened skepticism of trans/enby claims to being intersex as a result.
Read:
Intersex-questions on inclusionary views
“Just how "different" do we need to be in order to be "intersex enough"?”
Plenty of other variations are found at puberty
Label-pushing dynamics
TERFS and womb-yn
Intersex Wiki: temporarily perisex
.💛💜💛.
Stage 3. Immerse yourself in life stories.
The steps in this stage can be done in any order. But I think it's important to do (or at least seriously begin) this before doing the other stages. Take notes about which life stories resonate the most with you, and the variation labels of the people whose experiences you resonate with the most. You’ll want that for the next stage.
Consume at least five of the following:
All of: Inter_view: an intersex podcast (7 one-hour episodes)
At least seven episodes of: The I in Us. This is an intersex radio show that has LOTS of episodes so just pick whatever looks cool or is most recent.
All of: The Interface Project (21 profiles, each has a brief bio accompanied with a short video)
All of: #MyIntersexStory (57-page brochure by OII Europe)
All of: the posts on @intersex-culture-is (16 pages of short posts)
All of: the posts on @intersex-anthology (7 pages of posts of varying lengths)
All of: the posts on @the-intersex-experience (8 pages of mostly short posts)
All of: the posts on @intersex-confessions (9 pages of mostly short posts)
All of: Intersex: Stories and Statistics from Australia (274-page report by IHRA)
All of: Born Both by Hida Viloria (a memoir by an intersex activist. MAJOR CWs for graphic sexual violence starting in the VERY FIRST CHAPTER)
I think it's important to do this early on, because it will help you navigate intersex spaces (stage 5) and help you with navigating the diagnosis process.
.💛💜💛.
Stage 4. Identify at least two specific intersex variations that you could plausibly have.
Only after the previous stages do I recommend you start looking through lists of intersex variations for what it is you may have.
Read through the following in its entirety:
InterACT’s intersex variations glossary
You can supplement that information from Intersex Wiki and DHDDMod's variations guide.
I think it’s important to consider differential diagnoses, which is why I say you should identify at least two specific variations you may have. Some variations are frequently misdiagnosed as other variations (e.g. NCAH is often misdiagnosed as PCOS) so don’t get too attached to any specific variation too quickly!
If you read through the InterACT variations glossary and none of the the variations described there sound like you, this should prompt some additional consideration. The glossary isn’t exhaustive (they say as much!), but it is comprehensive. This may be a stage in which you realize you’re not intersex, in which case congratulations: you’ve figured out an answer, and got to learn about intersex in the process!
.💛💜💛.
Stage 5. Attend three events of intersex organizations.
They can be three meetings of the same organization, or you go to three events from different organizations, or two events of one organization and one event from another. The important thing is that these are pan-intersex and not a variation-specific event (e.g. an AIS-specific support group).
Unfortunately, many variation-specific organizations can harbour toxic attitudes towards transgender people and/or towards intersex identity. I do not recommend participating in any variation-specific communities until you feel comfortable with the intersex label.
You can find intersex organizations via:
This post by intersex-support
Intersexions Project Map
Intersex Wiki: Intersex organizations
It is normal to feel impostor syndrome when first participating in intersex community! Introduce yourself as that you’re questioning if you have <variations identified in last stage>.
I am deliberately putting this stage before pursuing any formal medical diagnosis because being in contact with these sorts of communities may be important for eventually getting advice on what tests to ask for, how to ask for it, and which physicians to talk to.
It is extremely common for intersex organizations to host events online. Many intersex organizations host the bulk of their events online, as that is more accessible to more people than in-person events. Nonverbal participation through text chat is frequently available at online events.
In my experience, online support groups like InterConnect will generally be best positioned to aid with questioners, followed by local advocacy organizations (which often run support groups). Social organizations will generally not be structured to actively give you space to talk about your questioning.
Make an effort to fully participate in the events you attend! Try to make friends and engage meaningfully with any activity or discussion question that the event is being structured around. Don’t try to repurpose the event to be about you and your questioning. Stick around for the entire event. Try to identify cool people you’d like to get to know better and try to actually get to know them!
.💛💜💛.
Stage 6. Ascertain what you would need for a diagnosis by a medical professional.
Once you’re starting to feel a bit comfortable in at least one intersex organization and have gone to multiple events, it’s probably time to seriously look into pursuing a formal diagnosis.
Figure out:
What tests are needed to confirm/disconfirm your possible variation(s)?
How do you access these tests?
Does a specialist like an endocrinologist or geneticist need to order the test? If so, how do you get a referral? Is there any local specialist you should specifically request that the referral go to?
How do you talk to your physicians about this? What documentation should you bring?
How long realistically would it take to get a formal diagnosis?
Again, it’s useful to be in contact with intersex organizations first, so that you can get advice on what is needed, which local physicians are worth talking to (or avoiding altogether), etc.
Talking to people who are local and/or have similar variations is also valuable for setting expectations about diagnosis. Many intersex people find it takes years to get a clear diagnosis: it may take multiple attempts to get a referral to a specialist, wait times for specialists (especially the good ones) can be long, tests can be inconclusive, wait times for certain tests can take months, etc.
Practically speaking, diagnosis is not an option for many people. For many low-income individuals, testing may be financially infeasible. Some individuals may be in circumstances where a diagnosis would put them at risk of violence or discrimination (e.g. immigrants in countries where diagnosis would jeopardize their immigration status). Others have had so many traumatic experiences with physicians that pursuing a diagnosis would simply be a risk to their mental health.
If you are considering self-diagnosis, read:
Intersex-support’s post on self diagnosis
Before self-diagnosing, talk to a couple of people who have confirmed diagnoses of the variation you think you may have. This is another reason it’s important to have established connections with intersex communities, because asking total strangers about this is kinda unusual and maybe invasive. Asking people you already know from events is just a lot less weird!
.💛💜💛.
Stage 7. Experiment, in safe spaces, with calling yourself intersex.
Keep attending meetings with intersex people! In spaces where it is safe for you to experiment, try calling yourself intersex. Some people find it helpful to add a descriptor when they’re first using the label, like “hormonally intersex” or “self-diagnosed intersex”. See how that goes for you!
Continue experimenting in intersex-oriented spaces and try out different ways of introducing yourself or talking about your experiences, and take note of what feels right to you. See if you become comfortable with the label.
After you get more settled/comfortable in intersex spaces, try experimenting with the intersex label in spaces that feel safe but aren’t intersex-specific, like LGBTQIA+ spaces or disability spaces, or just coming out to trusted friends/family. Expect to do a bunch of explaining what intersex is, so keep on hand the intersex 101 resources from Stage 1 to help with that.
The last ingredient in the process is time. For most people, intersex is not a label that can be ascertained in a day, or even a week. Many intersex people need weeks or even months of experimentation with the label and involvement with the community before feeling comfortable calling themselves intersex.
Keep going to intersex events. Keep following intersex folks on social media. Keep experimenting with the label in safe spaces, and try coming out to people in your life who feel safe.
It may be that after all this effort, you realize you’re not intersex. Congratulations: the goal here is to figure out an answer to “am I intersex?” and no is a valid answer!
In my experience, people who question if they have a certain identity and find out the answer is no still wind up having something adjacent. Perisex folks who question if they’re intersex tend to wind up realizing they have an adjacent identity, such as being trans or having a reproductive disability. I hope you maintain a connection to our community because we need all the allies we can get. 💛💜💛
It may also be that after all this effort, the label sticks! In which case continue with what you’ve been doing: coming out to people, within your comfort zone; continue going to intersex events; make intersex friends through these organizations. Find a niche for yourself in the intersex community. 💛💜💛
.💛💜💛.
PS. This blog post links to a bunch of other Tumblr posts/threads and I've reblogged them for anybody who finds it easier to access them that way. (I hope the format isn't too weird/unconventional especially for those who just got reblogged with a partial guide! Sorry!)
PPS: I got feedback on a draft of this guide from several other intersex folks and I want to just thank you all for the suggestions and links. 💛💜💛
Questioning if you're intersex: a guide for people who like protocols and processes
People can realize they’re intersex at any stage of life and there’s a fair number of people out there questioning if they’re intersex. There is no single right way to go about this process.
As an autistic person, I thought I would write up, in detail, ✨️ a Protocol ✨️to guide an individual through the process.
This guide is not intended to be The One And Only way to question, but rather a very structured way to do it for people (like me) who benefit from explicit, structured protocols. Not everybody is like me, and so this will not be for everybody. YMMV.
Overview of the different stages
This protocol has 8 stages, and each stage has a dedicated section below with more detail. The whole document is kind of long (sorry!) but questioning is an extended process and I want to be thorough.
Familiarize yourself with the basics. Make sure you don’t have any misconceptions about what intersex is, and learn the vocabulary used by the community. You may at this stage discover you’re not intersex, and so you do not need any further steps. (Congratulations on finding an answer!)
Familiarize yourself with different conceptualizations of intersex (e.g. medical model) and learn to recognize intersex exclusionism. It will be important for you to recognize exclusionism while questioning so that you can see it for what it is, rather than invalidation. This will involve some readings, provided in the section below.
Immerse yourself in intersex life stories. Intersex is not just a category of bodily variations, it’s also a category of social experiences that result from these bodily variations. If certain life stories really resonate with you, write down what intersex variation(s) these people have - it’ll be useful for the next step.
Identify at least two specific intersex variations you could plausibly have. Read about them. If you cannot identify any variations that you could plausibly have, this is another point at which you may realize you are not intersex.
Attend at least three meetings of intersex organizations. Explain you are questioning if you are intersex, and what variation(s) you think you may have. Importantly, listen to what the others are talking about and participate in the discussion. (Don’t make it all about you.) Many intersex organizations host online events regularly; this does need to be in person.
Ascertain what you would need for a diagnosis by a medical professional. I put this after the previous stage because you may need advice from intersex people with similar variations about how to get the right diagnostics. If these tests are not available to you, talk to people who have been diagnosed with the variation(s) you think you may.
Experiment, in safe spaces, with calling yourself intersex. Keep attending meetings with intersex people! See if you become comfortable with the label.
Keep at it. If you find yourself comfortable with the label, and have been using it for long enough that you feel confident you’re intersex, congratulations!
.💛💜💛.
Stage 1. Familiarize yourself with the basics.
First: confirm you have a strong understanding of what intersex means. Many people who question they are intersex wind up discovering they are transgender, nonbinary and/or altersex. Note it is possible to be both intersex AND trans/nb/altersex!
So it’s important to have a clear idea of what intersex is before you go any further.
Read/watch at least three of the following in their entirety:
InterACT's FAQ (text, about 16 pages)
The FAQ by @intersex-support (text, about 7 pages)
Intersex Explained YouTube playlist by Hans Lindahl (6 short videos)
This Tumblr thread about misconceptions about intersex (text, about 1 page)
Read all four of the following:
This post about transition goals (text, about 2 pages)
This post about terms for people who want a body that is neither male nor female (text, about 3 pages)
This Tumblr thread on “connection is not a feeling” (text, about 2 pages)
This post by satellites-halo about kindness for people who are misinformed about intersex (text, 1 page)
The intersex community has a bunch of specialized vocabulary. Here are some glossaries:
Basic glossary by trans-axolotl (text, about a page)
A longer glossary by intersexfairy (text, about 3 pages)
Intersex Wiki's Glossary (text, about 9 pages.)
It is important at every stage of the journey to consult SEVERAL intersex sources. There is no singular authority on intersex. While there are many issues you’ll find broad consensus on (e.g. PCOS is intersex), we don’t all agree on everything. Some sources have known issues or limitations, and that's another reason to consult many different sources, to make up for the individual limitations of each source.
.💛💜💛.
Stage 2. Familiarize yourself with different conceptualizations of what intersex is
There are two major divisions within the intersex community that you should be aware of before going further:
The divide between intersex who view intersex through the medical model (intermedicalism) and those who do not.
The divide between intersex people who are exclusionist (i.e. have a very narrow view of who is and is not intersex) and who are inclusionist.
Often, but not always, intermedicalism goes hand-in-hand with exclusionism. Learning what intersex exclusionism looks like is vital for people who are questioning, so that you can recognize it for what it is and not as invalidation.
Models of Intersex
Like with disability, people tend to understand intersex through the medical model rather than non-medicalizing alternatives like the social model. Research has consistently found that moving past the medical model is vital for developing a positive sense of intersex identity (Davis, 2011; Viloria, 2017).
Read at least one of the following:
Intersex Wiki: Models of intersex (text, about 5 pages)
Costello, Cary Gabriel. "Intersex and trans* communities: Commonalities and tensions." In Transgender and intersex: Theoretical, practical, and artistic perspectives, pp. 83-113. New York: Palgrave Macmillan US, 2016. (peer-reviewed book chapter, 32 pages) -- this is more detailed, but I think it's worth it!
I think that it’s also very important for questioners to move past the medical model. Unless you are having acute symptoms that are a medical problem for you (e.g. infertility, chronic pain in the groin area), physicians are unlikely to resolve your questioning for you. Physicians are generally resistant to investigating intersex diagnoses without a medical reason for it. If you’re questioning in order to understand yourself (and/or your gender) better, what you have is a social problem, not a medical one.
Recognizing intersex exclusionism
There are a few different ways in which intersex people can be exclusionist:
First, some intersex people think a diagnosis is required to be intersex. This is straightforwardly intermedicalist. My experience is that these people also tend to be classist, and take access to understanding physicians for granted.
Secondly, some intersex people have very narrow views of which kinds of intersex variations “count” – usually they accept ambiguous genitalia and ovotestes as intersex, but the further away from that you get the less likely they may accept it.
Extreme exclusionists may reject variations like MRKH (Müllerian agenesis), Turner Syndrome (Monosomy X), and Klinefelter Syndrome (Trisomy XXY) as intersex.
Milder exclusionists may reject variations like PCOS-hyperandrogenism and Poland Syndrome, which are associated with variations in the secondary (and not primary) sex characteristics.
Milder exclusionists may reject traits like gynecomastia, distal hypospadias, and hyperandrogenism as intersex simply because they are common. Physicians tend to be very invested in the idea that intersex must be rare, and resistant labelling anything somewhat common as intersex.
There is often a gender dynamic in exclusionism: male-associated genital variations like micropenis, cryptorchidism, and hypospadias are less likely to be understood as intersex than comparable female-typed variations like clitoromegaly, uterine agenesis, and vaginal atresia.
There is also a racial dynamic in exclusionism: nonwhite people are more likely to be “rounded up” to be intersex and white people are more likely to be “rounded down”. An exclusionist who claims that hyperandrogenism isn’t intersex will often still consider black women with hyperandrogenism to be intersex (see: Caster Semenya). There is a long history of eugenics shaping medical understandings of intersex.
Again, this tends to be influenced by intermedicalism because these individuals are deferring to how physicians define intersex, rather than how intersex people define intersex.
Thirdly, some intersex people are resistant to transgender/nonbinary individuals identifying as intersex. While sometimes this is simply transphobia, there is a long history of trans/enby folks making dubious claims to intersexuality (see the Costello paper for more). Many intersex people have heightened skepticism of trans/enby claims to being intersex as a result.
Read:
Intersex-questions on inclusionary views
“Just how "different" do we need to be in order to be "intersex enough"?”
Plenty of other variations are found at puberty
Label-pushing dynamics
TERFS and womb-yn
Intersex Wiki: temporarily perisex
.💛💜💛.
Stage 3. Immerse yourself in life stories.
The steps in this stage can be done in any order. But I think it's important to do (or at least seriously begin) this before doing the other stages. Take notes about which life stories resonate the most with you, and the variation labels of the people whose experiences you resonate with the most. You’ll want that for the next stage.
Consume at least five of the following:
All of: Inter_view: an intersex podcast (7 one-hour episodes)
At least seven episodes of: The I in Us. This is an intersex radio show that has LOTS of episodes so just pick whatever looks cool or is most recent.
All of: The Interface Project (21 profiles, each has a brief bio accompanied with a short video)
All of: #MyIntersexStory (57-page brochure by OII Europe)
All of: the posts on @intersex-culture-is (16 pages of short posts)
All of: the posts on @intersex-anthology (7 pages of posts of varying lengths)
All of: the posts on @the-intersex-experience (8 pages of mostly short posts)
All of: the posts on @intersex-confessions (9 pages of mostly short posts)
All of: Intersex: Stories and Statistics from Australia (274-page report by IHRA)
All of: Born Both by Hida Viloria (a memoir by an intersex activist. MAJOR CWs for graphic sexual violence starting in the VERY FIRST CHAPTER)
I think it's important to do this early on, because it will help you navigate intersex spaces (stage 5) and help you with navigating the diagnosis process.
.💛💜💛.
Stage 4. Identify at least two specific intersex variations that you could plausibly have.
Only after the previous stages do I recommend you start looking through lists of intersex variations for what it is you may have.
Read through the following in its entirety:
InterACT’s intersex variations glossary
You can supplement that information from Intersex Wiki and DHDDMod's variations guide.
I think it’s important to consider differential diagnoses, which is why I say you should identify at least two specific variations you may have. Some variations are frequently misdiagnosed as other variations (e.g. NCAH is often misdiagnosed as PCOS) so don’t get too attached to any specific variation too quickly!
If you read through the InterACT variations glossary and none of the the variations described there sound like you, this should prompt some additional consideration. The glossary isn’t exhaustive (they say as much!), but it is comprehensive. This may be a stage in which you realize you’re not intersex, in which case congratulations: you’ve figured out an answer, and got to learn about intersex in the process!
.💛💜💛.
Stage 5. Attend three events of intersex organizations.
They can be three meetings of the same organization, or you go to three events from different organizations, or two events of one organization and one event from another. The important thing is that these are pan-intersex and not a variation-specific event (e.g. an AIS-specific support group).
Unfortunately, many variation-specific organizations can harbour toxic attitudes towards transgender people and/or towards intersex identity. I do not recommend participating in any variation-specific communities until you feel comfortable with the intersex label.
You can find intersex organizations via:
This post by intersex-support
Intersexions Project Map
Intersex Wiki: Intersex organizations
It is normal to feel impostor syndrome when first participating in intersex community! Introduce yourself as that you’re questioning if you have <variations identified in last stage>.
I am deliberately putting this stage before pursuing any formal medical diagnosis because being in contact with these sorts of communities may be important for eventually getting advice on what tests to ask for, how to ask for it, and which physicians to talk to.
It is extremely common for intersex organizations to host events online. Many intersex organizations host the bulk of their events online, as that is more accessible to more people than in-person events. Nonverbal participation through text chat is frequently available at online events.
In my experience, online support groups like InterConnect will generally be best positioned to aid with questioners, followed by local advocacy organizations (which often run support groups). Social organizations will generally not be structured to actively give you space to talk about your questioning.
Make an effort to fully participate in the events you attend! Try to make friends and engage meaningfully with any activity or discussion question that the event is being structured around. Don’t try to repurpose the event to be about you and your questioning. Stick around for the entire event. Try to identify cool people you’d like to get to know better and try to actually get to know them!
.💛💜💛.
Stage 6. Ascertain what you would need for a diagnosis by a medical professional.
Once you’re starting to feel a bit comfortable in at least one intersex organization and have gone to multiple events, it’s probably time to seriously look into pursuing a formal diagnosis.
Figure out:
What tests are needed to confirm/disconfirm your possible variation(s)?
How do you access these tests?
Does a specialist like an endocrinologist or geneticist need to order the test? If so, how do you get a referral? Is there any local specialist you should specifically request that the referral go to?
How do you talk to your physicians about this? What documentation should you bring?
How long realistically would it take to get a formal diagnosis?
Again, it’s useful to be in contact with intersex organizations first, so that you can get advice on what is needed, which local physicians are worth talking to (or avoiding altogether), etc.
Talking to people who are local and/or have similar variations is also valuable for setting expectations about diagnosis. Many intersex people find it takes years to get a clear diagnosis: it may take multiple attempts to get a referral to a specialist, wait times for specialists (especially the good ones) can be long, tests can be inconclusive, wait times for certain tests can take months, etc.
Practically speaking, diagnosis is not an option for many people. For many low-income individuals, testing may be financially infeasible. Some individuals may be in circumstances where a diagnosis would put them at risk of violence or discrimination (e.g. immigrants in countries where diagnosis would jeopardize their immigration status). Others have had so many traumatic experiences with physicians that pursuing a diagnosis would simply be a risk to their mental health.
If you are considering self-diagnosis, read:
Intersex-support’s post on self diagnosis
Before self-diagnosing, talk to a couple of people who have confirmed diagnoses of the variation you think you may have. This is another reason it’s important to have established connections with intersex communities, because asking total strangers about this is kinda unusual and maybe invasive. Asking people you already know from events is just a lot less weird!
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Stage 7. Experiment, in safe spaces, with calling yourself intersex.
Keep attending meetings with intersex people! In spaces where it is safe for you to experiment, try calling yourself intersex. Some people find it helpful to add a descriptor when they’re first using the label, like “hormonally intersex” or “self-diagnosed intersex”. See how that goes for you!
Continue experimenting in intersex-oriented spaces and try out different ways of introducing yourself or talking about your experiences, and take note of what feels right to you. See if you become comfortable with the label.
After you get more settled/comfortable in intersex spaces, try experimenting with the intersex label in spaces that feel safe but aren’t intersex-specific, like LGBTQIA+ spaces or disability spaces, or just coming out to trusted friends/family. Expect to do a bunch of explaining what intersex is, so keep on hand the intersex 101 resources from Stage 1 to help with that.
The last ingredient in the process is time. For most people, intersex is not a label that can be ascertained in a day, or even a week. Many intersex people need weeks or even months of experimentation with the label and involvement with the community before feeling comfortable calling themselves intersex.
Keep going to intersex events. Keep following intersex folks on social media. Keep experimenting with the label in safe spaces, and try coming out to people in your life who feel safe.
It may be that after all this effort, you realize you’re not intersex. Congratulations: the goal here is to figure out an answer to “am I intersex?” and no is a valid answer!
In my experience, people who question if they have a certain identity and find out the answer is no still wind up having something adjacent. Perisex folks who question if they’re intersex tend to wind up realizing they have an adjacent identity, such as being trans or having a reproductive disability. I hope you maintain a connection to our community because we need all the allies we can get. 💛💜💛
It may also be that after all this effort, the label sticks! In which case continue with what you’ve been doing: coming out to people, within your comfort zone; continue going to intersex events; make intersex friends through these organizations. Find a niche for yourself in the intersex community. 💛💜💛
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PS. This blog post links to a bunch of other Tumblr posts/threads and I've reblogged them for anybody who finds it easier to access them that way. (I hope the format isn't too weird/unconventional especially for those who just got reblogged with a partial guide! Sorry!)
PPS: I got feedback on a draft of this guide from several other intersex folks and I want to just thank you all for the suggestions and links. 💛💜💛
Hi everyone! I thought I'd make a guide of basic intersex vocabulary and definitions. I will link to sources when relevant!
intersex: "A difference in sex traits, that happens on its own, and is noticeable enough to cause stigma or violence for breaking an anatomical expectation. " -Hans Lindhal, intersex activist.
"Intersex is an umbrella term for differences in sex traits or reproductive anatomy. Intersex people are born with these differences or develop them in childhood. There are many possible differences in genitalia, hormones, internal anatomy, or chromosomes, compared to the usual two ways that human bodies develop."- InterACT
Intersex variation: A specific variation and diagnosis such as Congenital Adrenal Hyperplasia, Androgen Insensitivity Syndrome, Turner's Syndrome, or Klinefelter's Syndrome. Here's a link to a glossary of many common intersex variations!
Intersexism/dyadism/interphobia: A term to describe intersex oppression. Intersex oppression is rooted in ableism, and manifests through things like medical abuse, harassment, sexual violence, stigma, and pathologization. Here is one working definition for intersexism: "Intersexism is a type of ableism; ableism that is influenced by and rooted in the cisheteronormative idea of how a man or woman needs to function. This “function” is a construct of what settler-colonialism and capitalism see as the most effective way to use gender as exploitation and extraction of profit."-written by Mod Stev of @intersex-support.
Intersex Surgery/Intersex genital mutilation: A term to describe a category of genital surgeries that happen at birth. These surgeries are cosmetic and not medically necessary, and are focused on "normalizing" ambiguous genitalia and sterilization. Here's a report on intersex surgery and interviews with intersex adults. Intersex surgery is legal is almost every country.
Non consensual hormone therapy: A lot of intersex teens and adults are coerced or forced into taking hormones that they do not want to be taking. This happens to both cis and trans intersex people.
Dyadic/Perisex/Endosex: All words that mean someone who is not intersex. Whichever word people use is basically up to personal preference and community norms.
Intergender: Intergender is a gender identity for use by intersex people only. It doesn’t have one specific definition-it is used by intersex people to mean a whole variety of things. It’s used to describe the unique ways our intersex experience intersects with and influences our gender. Some people use it as a modifying term, such as calling themselves an intergender man or woman, as a way to explain the way being intersex affects their identity. Other people identify solely as intergender, and have that be their whole gender. A lot of intergender people consider themselves to be trans, but not all. Here is the intergender flag.
Ipsogender: A gender identity used by intersex people who identify as the gender they were assigned at birth, but feel that being intersex plays into their gender identity and that their experiences are not adequately described by cisgender.
Outdated terminology:
DSD: DSD stands for disorders of sex development, and is the medical term for intersex. DSD terminology was created at the intersex consensus meeting in 2005 by 50 medical experts and two intersex activists, one from ISNA. The DSD terminology shift was also created with the input of a dyadic transphobes who were involved in the shift in ISNA's intersex activism where they distanced themselves from trans and queer politics and instead allied with doctors and medicalization. Some intersex people still do use DSD terminology for themselves, but dyadic allies should avoid it.
Derogatory Language:
Hermaphrodite: This is probably the most common slur used against intersex people. It should never be said by dyadic people, and should never be said to refer to humans. Only intersex people can reclaim hermaphrodite. There is a scientific meaning to hermaphrodite when referring to animals, and dyadic people should only say it in that context and also be considerate if posting things with that word on social media. Hermaphrodite has a very violent history and is a very painful word for many intersex people. If you see someone referring to the "h slur," this is probably the slur they are referring to.
He-she: This is a derogatory term that a lot of intersex people and trans women are called. Similar to the h slur, there is a history of violence and harassment with this term, and a lot of intersex people have been negatively impacted by this term. Dyadic people should never call intersex people a "he-she." It's good to avoid typing out he-she whenever possible, and if referring to someone who uses both he/him and she/her pronouns, saying "she/he" or "him/her" pronouns is a better option.
Futanari: This is essentially the Japanese translation of the h slur. It is used with a lot of fetish content that primarily targets intersex people. Dyadic people should not call real life people "futa" and need to understand that this is an incredibly offensive term. Futanari is also not the Japanese word for intersex; a Japanese intersex activist website uses インターセックス.
other intersex people feel free to add on, or offer alternative definitions!
[this reblog is part of a structured guide for intersex questioning]
Stage 1. Familiarize yourself with the basics.
First: confirm you have a strong understanding of what intersex means. Many people who question they are intersex wind up discovering they are transgender, nonbinary and/or altersex. Note it is possible to be both intersex AND trans/nb/altersex!
So it’s important to have a clear idea of what intersex is before you go any further.
Read/watch at least three of the following in their entirety:
InterACT's FAQ (text, about 16 pages)
The FAQ by @intersex-support (text, about 7 pages)
Intersex Explained YouTube playlist by Hans Lindahl (6 short videos)
This Tumblr thread about misconceptions about intersex (text, about 1 page)
Read all four of the following:
This post about transition goals (text, about 2 pages)
This post about terms for people who want a body that is neither male nor female (text, about 3 pages)
This Tumblr thread on “connection is not a feeling” (text, about 2 pages)
This post by satellites-halo about kindness for people who are misinformed about intersex (text, 1 page)
The intersex community has a bunch of specialized vocabulary. Here are some glossaries:
Basic glossary by trans-axolotl (text, about a page)
A longer glossary by intersexfairy (text, about 3 pages)
Intersex Wiki's Glossary (text, about 9 pages.)
It is important at every stage of the journey to consult SEVERAL intersex sources. There is no singular authority on intersex. While there are many issues you’ll find broad consensus on (e.g. PCOS is intersex), we don’t all agree on everything. Some sources have known issues or limitations, and that's another reason to consult many different sources, to make up for the individual limitations of each source.
it’s not intersexist to want a neutral body, mixed sex characteristics, or a version of HRT that is neither fully masculinising nor feminising. however. the reason you may be getting called intersexist for this is the way dyadics talk about these kinds of transition goals… can be intersexist
so. these phrases are not okay:
“I want to be intersex”
“I’m transitioning to have an intersex body”
“I’m becoming a hermaphrodite”
“I’m jealous of intersex people”
“intersex people are transition goals”
instead try:
“I would like to have a sex neutral body”
“I’m transitioning to be both male and female”
“I would like to have a mix of genitals and secondary sex characteristics”
or literally anything else that doesn’t bring intersex people into it
you can have your goals. every person deserves to be able to transition in a way that makes them happy with their bodies. just be aware that you are not intersex, and our experiences are not yours
so many things. I’ll try not to get angry but I can’t make any promises
there is no such thing as “the intersex body”. there are many many many versions of being intersex, and not all of them look noticeably different from one of the binary sexes
being intersex often comes along with a lot of trauma. medical trauma. sexual assault. bullying. you name it, the rate is higher in the intersex population. being intersex is not something you can just claim the “fun parts” of
it inherently implies that you think being intersex is “naturally nonbinary” when that’s not even remotely how it works
many intersex variations come along with disabilities, or can be disabling in and of themselves. again. you can’t just take the fun parts of being intersex and act like that’s the same as being intersex
basically. you don’t want to be intersex. you want a specific (fetishised) version of being intersex
it’s different from a binary trans person wanting to be a different binary sex because… being intersex is not the same as being a binary sex. we are not a halfway point between male and female. we are not a third sex. you’re either born intersex or you’re not. that’s all there is to it
Labels for people wish to transition to a state between male and female
This post is for people who may identify with "trans intersex" / "MtI" / "FtI", these labels are harmful, so I'm bringing awareness to some alternatives!
Nonbinary
We all know this one. A person who's gender identity does not align with a binary gender. Many people use this to describe their transition as well.
Transneutral
Transitioning to a neutral or between state. Related to terms FtN, MtN, (N standing for neutral or nonbinary) FtX, MtX, (X representing 'other' as seen on official documents)
Transneutral flags
Androgyne / Androgynous
An androgynous person, such as one whose appearance is neither clearly masculine nor clearly feminine AND/OR a person whose gender identity is linked to androgyny, such as by being a blend of male and female or by being neither male nor female.
Transandrogynous flag, Androgyne flag, Androgynous flag
Salmacian / Bigenital
A label for those who wish to transition to have both a penis and a vagina. This is not linked to any specific identity, anyone can be salmacian or bigenetal. The term salmacian has had controversy involving intersex fetishization however the label itself is not considered harmful.
Salmacian flag, Bigenital flag
Varioformic
A transgender-adjacent umbrella term for those who desire to physically transition partially or in an otherwise non-standard way. It can be used by cis or trans people. This label covers everything from bigenital bottom surgery to cis people who wish to transition
Variotrans flag, Varioformic flag, Varioxenic flag
Epicene
A historic term referring to a person with both male and female characteristics, or a person of indeterminate sex. It can describe both perisex transsexual & transgender people, as well as intersex people.
Epicene flags
Altersex
The most updated definition is "a state of having sex characteristics or a combination of sex characteristics that deviate from what would be considered male or female, while also not inherently being intersex" This term has had a controversial history due to its coining as a replacement for words like 'herm', 'futanari', and other slurs in porn tags. Some people have adopted it as a genuine identity since then, and it has had multiple definition changes. Notably, one of the earlier definitions positioned altersex as a 'third category' in the intersex/perisex (non-intersex) dichotomy, this is not true, and is intersexist misinformation. Everyone is either perisex (non-intersex) or intersex, regardless of whether or not they are altersex.
Altersexual flag, Altersex flag
Aldernic
Aldernic is an umbrella term for individuals who have, or wish to have, a body that deviates from what is expected in society or typical human notions. Aldernic is geared towards those who wish to have a more nonhuman form, and is popular among alterhuman, otherkin, and therian circles. It is however, not exclusive to these groups.
Alderelic, Aldernic, Alderdragolos
This is not an exhaustive list, feel free to add on other terms as well! Thank you for reading!
With some of the responses I've been getting on my post about connecting with nature, I realized I needed to write about this.
Folks have got to understand that connection is not a feeling. "I feel such a deep connection with-" nope, that's not connection you're feeling; that's fascination.
Whether it's nature, or a culture, or anything at all, connection isn't transcendent. It's something you build with actual physical effort. It's a relationship.
Let's say there's a stray cat outside, and I want to have a connection with it. So I go inside my house and meditate on the cat, visualizing myself sending out rays of love to the cat. I look at pictures of cats on the Internet. I collect cat memorabilia and pray to cat goddesses. But when I go outside and try to pet the stray cat, it runs away.
This is because I never built a genuine connection, or relationship, with this cat. I'm a parasocial admirer, at best. To the cat, I'm a weird stranger.
But let's say I put cat food outside, and I stay out there while the cat eats, and slowly get closer to the cat as it becomes more comfortable with my presence. Finally, I give the cat light touches, and it gradually learns that I am safe. And we become friends.
Now I have a connection with the cat, because we have a relationship. I feed the cat, the cat eats my food, and we're in each others' social networks.
"But what if I can't build relationships like this?"
It's okay if this is impossible for you right now. You're not going to be a Bad Pagan or a Bad Witch because you can't do something that is literally impossible at the moment.
But, if a connection is something you want to have, at some point? Get studying. You want a connection with nature at some point? Okay, then start studying ecology. Learn about the rain cycle. Learn about environmental damage. Find materials about the plants and animals in your area.
What about a culture? Okay, go learn about its history, go learn what kinds of problems its people are currently facing, and work on perceiving them as real, complex people instead of whatever stereotype you have in your mind right now.
And above all, remember: that's not a mystical connection you're feeling, that's fascination.
I want to explicitly point out that this is true of the intersex community. There are a LOT of people who want a connection to being intersex. Many are questioning if they're intersex, and a good number will discover they are. A lot of the people who aren't intersex are trans or altersex and somehow have convinced themself that if they have A Medical Reason then it will be okay to be trans.
But if you actually go learn about being intersex, you'll VERY quickly discover that having A Medical Reason your gender is different is usually terrible news for gender affirmation. It means transition you don't want being forced upon you. It usually ADDS barriers to any voluntary gender transition. It means a LOT of medical trauma. It means being treated as a freak show when you show up to the doctor's office. It means people are selectively aborting people like you. It means eugenics.
A lot of the people who are fascinated by intersex are the people actively doing harm to the intersex community. They're creating smut based on zero research that reinforces misconceptions about what intersex is. They're cold DMing intersex people asking about our genitals. They're making it impossible to be intersex online whenever an intersex athlete is in the news. They're spewing TERF nonsense about how rare and exotic intersex is. They're doing biological essentialism and giving intersex people dysphoria for assuming we're all nonbinary androgynes. And so on.
You don't have to be intersex to build a meaningful relationship with the intersex community. There are perisex allies showing up to intersex rallies, teaching doctors about intersex, talking parents out of agreeing to let doctors mutilate their children, bringing the coffee to support groups, doing moderation work for online intersex communities, and countless other tasks that make a community.
If you want to write an intersex character, or figure out if you're intersex, or just be a good ally, you gotta actually show up and make the connections. @intersex-support has a great post on where to start.
The phenomena of specifically AFAB perisex people self-identifying as intersex because of traits that are just perisex bodily variations (that they did not get taught about) is due to misogyny and how under-taught people are about average mullerian bodies. These people should be treated with kindness and respect, as they're just misinformed.
(ex: mullerians who think that: having any visible body hair is hirsutism, having a not 'perfect' vagina means they have ambiguous genitals, having sagging breasts is intersex, etcetc)
Perisex ≠ having a perfect body. You can be perisex and have visible body hair, too "much"/too "little" fat, genitals with "too much" skin/fat/whatever, have low or high amounts of sensation in sensitive areas, etc etc. You are not intersex just for having differences in these things, and that's okay. You can find solidarity with us without being intersex yourself, and that's okay. We need more perisex allies.
(edit: removed language of "woman" and replaced it with mullerian since that's what I meant in the first place)
[this is part of a structured guide for intersex questioning]
Stage 2. Familiarize yourself with different conceptualizations of what intersex is
There are two major divisions within the intersex community that you should be aware of before going further:
The divide between intersex who view intersex through the medical model (intermedicalism) and those who do not.
The divide between intersex people who are exclusionist (i.e. have a very narrow view of who is and is not intersex) and who are inclusionist.
Often, but not always, intermedicalism goes hand-in-hand with exclusionism. Learning what intersex exclusionism looks like is vital for people who are questioning, so that you can recognize it for what it is and not as invalidation.
Models of Intersex
Like with disability, people tend to understand intersex through the medical model rather than non-medicalizing alternatives like the social model. Research has consistently found that moving past the medical model is vital for developing a positive sense of intersex identity (Davis, 2011; Viloria, 2017).
Read at least one of the following:
Intersex Wiki: Models of intersex (text, about 5 pages)
Costello, Cary Gabriel. "Intersex and trans* communities: Commonalities and tensions." In Transgender and intersex: Theoretical, practical, and artistic perspectives, pp. 83-113. New York: Palgrave Macmillan US, 2016. (peer-reviewed book chapter, 32 pages) -- this is more detailed, but I think it's worth it!
I think that it’s also very important for questioners to move past the medical model. Unless you are having acute symptoms that are a medical problem for you (e.g. infertility, chronic pain in the groin area), physicians are unlikely to resolve your questioning for you. Physicians are generally resistant to investigating intersex diagnoses without a medical reason for it. If you’re questioning in order to understand yourself (and/or your gender) better, what you have is a social problem, not a medical one.
Recognizing intersex exclusionism
There are a few different ways in which intersex people can be exclusionist:
First, some intersex people think a diagnosis is required to be intersex. This is straightforwardly intermedicalist. My experience is that these people also tend to be classist, and take access to understanding physicians for granted.
Secondly, some intersex people have very narrow views of which kinds of intersex variations “count” – usually they accept ambiguous genitalia and ovotestes as intersex, but the further away from that you get the less likely they may accept it.
Extreme exclusionists may reject variations like MRKH (Müllerian agenesis), Turner Syndrome (Monosomy X), and Klinefelter Syndrome (Trisomy XXY) as intersex.
Milder exclusionists may reject variations like PCOS-hyperandrogenism and Poland Syndrome, which are associated with variations in the secondary (and not primary) sex characteristics.
Milder exclusionists may reject traits like gynecomastia, distal hypospadias, and hyperandrogenism as intersex simply because they are common. Physicians tend to be very invested in the idea that intersex must be rare, and resistant labelling anything somewhat common as intersex.
There is often a gender dynamic in exclusionism: male-associated genital variations like micropenis, cryptorchidism, and hypospadias are less likely to be understood as intersex than comparable female-typed variations like clitoromegaly, uterine agenesis, and vaginal atresia.
There is also a racial dynamic in exclusionism: nonwhite people are more likely to be “rounded up” to be intersex and white people are more likely to be “rounded down”. An exclusionist who claims that hyperandrogenism isn’t intersex will often still consider black women with hyperandrogenism to be intersex (see: Caster Semenya). There is a long history of eugenics shaping medical understandings of intersex.
Again, this tends to be influenced by intermedicalism because these individuals are deferring to how physicians define intersex, rather than how intersex people define intersex.
Thirdly, some intersex people are resistant to transgender/nonbinary individuals identifying as intersex. While sometimes this is simply transphobia, there is a long history of trans/enby folks making dubious claims to intersexuality (see the Costello paper for more). Many intersex people have heightened skepticism of trans/enby claims to being intersex as a result.
For this stage, read the following posts that I just reblogged (i.e. right under this post when seen from tumblr.com/interquestioning)
Intersex-questions on inclusionary views
“Just how "different" do we need to be in order to be "intersex enough"?”
Hi! I thought mabye this was the right place to ask this question? I know one way or another there is something wrong with my line of thinking but basically I have pcos and I was wondering if that made me intersex or if it was more complex than that? Because I do have things like I am growing sideburns and have a bit more hair under my chin. And I haven't had a period in over six years. Also my voice has been deemed to be more androgynous wich I think relates to the higher than average testosterone levels. But also when researching it seemed like mabye it was more about the experience. And while I have felt a little isolated about it in the past cause I didn't understand it, and I like the pcos intersex tag. I have also been privledged enough to live in an area where I have not faced bigotry for it. And I don't know if I can consider myself intersex or if that would be taking up space that is not meant for me?
Im not sure if this is a good question and no pressure to answer it of course! If the way I'm thinking is intersexist and you do decide to answer it please do let me know though! I'm just a little bit confused and my diagnosis has been a little bit of a revelation for me. Thanks for everything you do!
Many intersex people and much of the intersex community considers PCOS (especially with hyperandrogenism or symptoms of hyperandrogenism) an inherently intersex variation. The position of this blog is that it is inherently intersex. However, please note that this is a more inclusionary view—more exclusionary individuals and limited definitions of intersex may exclude this as intersex (although they usually still consider it intersex if there is significant or noticable hyperandrogenism). It is important to note that, although I do my best to be factual in many cases, my perspective is inherently biased in favor of inclusionary definitions of intersex and inclusion in the intersex community. However, the experiences you describe are something I think many people on varying levels of opinions on inclusion in the intersex community would consider intersex. I would absolutely consider you intersex, and many other intersex people would as well.
If you feel that the intersex identity describes you, that the community is for you, etc., I encourage you to label or acknowledge yourself as intersex! There isn't limited space—you are not taking up space by existing as an intersex person. The space is meant for you.
You don't have to have faced bigotry to be intersex. In fact, it's a good thing you haven't, and that's what I hope will be true for all intersex people someday! However, I would like to note, there are often modes of bigotry or oppression we don't always notice until retrospect. I thought I had never faced any transphobia really for some time in my life, only to later realize I had many incredibly transphobic experiences. Not that this is necessarily true for you—but sometimes we dismiss, don't realize, or, in a good way, aren't affected by instances of bigotry. But the fact that you even ever felt isolated, lost, confused, or alone because of your experiences is something that is very common for intersex people, and I think that deserves to be acknowledged and validated.
I don't think there is anything wrong with your lines of thinking and you are not being intersexist with your questions. And yes, this is the right place to ask these questions!
I hope I could answer everything you brought up, and if you have more to say, feel free.
TLDR; You are more than welcome to use the intersex label.
@blaugrana-blues People say this about any intersex variation. Just how "different" do we need to be in order to be "intersex enough"? Do we need to all be true hermaphrodites to "count"? Do we all need to be infertile? Where is the line to you?
Are people with CAIS and persistent mullerian ducts who can still have children no longer intersex? Are people with C-CAH who do not present with ambiguous genitals at birth no longer intersex?
Why are you so hellbent on turning intersex people into some mysterious foreign group that you can't conceive any ""normal"" person being a part of?
Aside from many intersex people not showing obvious physical signs, aside from PCOS and NCAH and various other adrenal disorders having so much symptom overlap you cannot visibly tell the difference without testing, aside from PCOS itself being widely misused currently by the medical field and constantly inappropriately diagnosed upon the first meeting with a hyperandrogenic patient without even doing any testing at all when it's meant to be a diagnosis of exclusion, aside from PCOS not always meaning "just extra hair" - Why does it hurt you for people to identify as intersex?
Why is it so much of an insult to you to be lumped in with us that you felt the need to comment this on my post?
You also do not have to identify as intersex if you do not want to, but there is absolutely no need to drag down others who do just because you felt personally attacked by a post aimed at intersex people with PCOS.
I am also going to link you three studies/reviews about PCOS and just how much overlap it has with other intersex variations so you can see how pointless it is trying to make a distinct difference between the lived experiences of those with PCOS and "The Actual Intersex People" because I am tired and I hope you will read these if your question was actually in any sort of good faith.
Relative Prevalence of Different Androgen Excess Disorders in 950 Women Referred because of Clinical Hyperandrogenism
Polycystic Ovary Syndrome and NC-CAH: Distinct Characteristics and Common Findings. A Systematic Review
Differentiating Polycystic Ovary Syndrome from Adrenal Disorders
Regardless of the cause, if you are visibly not within the "socially acceptable" sex binary, you're going to get treated like shit. There is absolutely no reason to want such drastic seperation between PCOS and the rest of the intersex community, we need to work together against oppression and discrimination, not apart.
Since it has come up twice now in the notes: The example with CAIS and biological children came from a personal example of someone I know personally who has CAIS and persistent mullerian ducts and has had two biological children. They have expressed frustration many times before with people assuming nobody with CAIS can have biological children or has a uterus or ovaries and we both find it incredibly important to remind people, even other intersex people, that no two intersex bodies are the same.
Even within one intersex variation, it can present completely differently between individuals. It is not generally helpful to make calls about what can or cannot happen in an intersex variation as an absolute, because there will always be exceptions to the rule. Intersex people by default are already rule exceptions (to the sex binary), and within those exceptions we will always have more exceptions. Bodies are unique like that.
As well, the og post in this thread was specifically pointing out how much variation intersex bodies can have and making a point that they are still intersex.
I also would not like anyone to add onto this with "but that's too rare" or anything of the sort, I have a variation that supposedly has less than 1000 reported cases in the US, I would not like rarer bodies to be brushed off for being rare. We still exist, and our bodies are still important when discussing intersex issues.
(Tagging so you both see this, I know I'm bad with tone but there's no upset or intentional paggro or anything like that meant here, genuinely, I just wanted to clarify this. @theforesteldritch @maid-of-timey-wimey )
Hi, I saw your post about having a more broad definition of intersex. Some people in the comments were talking about PCOS. I was wondering if you knew about any information, resources, or opinions on having PCOS being a deciding factor in someone’s identification of themselves as intersex. Or if you know anyone with a greater understanding of this topic you may be able to direct me to. I unfortunately have very little knowledge about the intersex community other than intersex folks belonging to the greater LGBTQIA+ community and the importance of the intersex symbol on the Pride flag. I appreciate any information you may be able to share. I hope I’ve been able to be articulate in what I’m asking. Thank you for your time.
to me, PCOS is absolutely an intersex variation.
to most if not all intersex organizations, PCOS is an intersex variation
some people get weirdly caught up in it because it's common despite having very similar presentation to every other intersex variation that causes hyperandrogenism
"8-13% of people AFAB have PCOS! that many people surely can't be intersex" is the main argument I hear against it and it's complete bullshit. being intersex is not rare. being intersex does not have to be rare. this isn't a special club. if you fit the definition of intersex then you're intersex and hyperandrogenism (a prominent feature of PCOS) and having variations in secondary sex characteristics (also a prominent feature of PCOS) have long been considered to be intersex traits. some people just make this weird exception where they'll say "those traits are intersex except when they're caused by PCOS" which is complete bullshit.
alternatively they'll say "well it shows up later in life it doesn't count!" as if half of intersex variations aren't the same and as if many are only discovered on accident. hell, I show no signs of ovarian dysgenesis (in part because mine is unilateral), I only found out because of completely unrelated imaging!
so, if your PCOS causes hyperandrogenism and/or variation in secondary sex characteristics then yes you are intersex and anyone who tells you otherwise is just doing some weird gatekeeping and you shouldn't listen to them.
i don't want to sound like i'm forcefully shoving identities on people who don't want it (who am i to do it, the patriarchy?), but.
"lots of people with PCOS/gynecomastia don't identify as intersex/don't want to be called intersex!" may it have something to do with all this aggressive gatekeeping around intersex label? with medical workers and scientists purposefully narrowing the definition of being intersex to exclude as many people as they can? with medical workers NOT SAYING even the actual diagnosis and being like "oh your hormones are messy you need to take these pills/get surgery?" with all these terfs screaming about "just disordered women/men?" with blatant misinformation around the definition of intersexness? with these ideas that intersex = visible difference at genitalia (at best) / bigenitalia (at worst)? with all these ideas that intersex people are rare freaky freaks, and it's nearly impossible to even see one of us, not to say BE one of us? may it have something to do with this?
"but we can't just say that 10% of people are intersex!" WHY? what makes you so scared of this idea? what makes you think that being intersex has to be something extremely rare? what you're afraid of?
i don't want to push labels on someone and pressure someone to identify with community they don't want to. but i'm really sure that gatekeeping and stigma play a big role in choices of people who don't identify as intersex while have body traits that fit the definition (not the narrow gatekeepy one but the community one).
I will push labels bc intersex is more like disability than personal identity. You will be treated disabled if you're disabled. You will be treated intersex if you're intersex. These two groups heavily cross over (I am both) and disabled people also try denying their own disabilities constantly. They don't want to be seen as other, or as weaker, or whatever else. Same with intersex people who don't want to see themselves as other, or less of a (their gender), or whatever else. You can say you're not intersex just like you can say you're not disabled, but society will still medicalize unharmful traits in your body while disregarding real health concerns. I'm tired of pretending intersex is a personal choice. It's not.
Not aimed at either person above in the chain, more like parallel play:
An interesting observation I have made is that a lot of times the kind of people who say you shouldn't call people who fit the wider definition of intersex by that term unless they have themselves first actively embraced that label-
-are also the kind of people who will read the news about some sort of homophobic conservative lawmaker-man getting caught having sex with a man and they will gleefully call the man gay -- even though the mEdiCaLLy aCcEpTaBLe* term is "men who have sex with men."
Like suddenly the "don't push labels" crowd is totally fine with pushing labels - when it's a label they are normal about.
Similarly very few people actually care about label-pushing when it comes to gendering infants. Like they think it's okay to tell a child "you are a girl" but not tell a grown-up "you are intersex"?
And lest there are any poor-pissers in the audience, I will spell it out: you can of course reject any label no matter how well it fits. You don't have to identify as intersex, homophobic lawmakers don't have to identify with the homosexual lifestyle or call themselves gay.
But it is worth it to kind of think about why the intersex label specifically causes people to be so very extra careful.
Y'know, this might be me talking out of my ass, it's like midnight, but I keep seeing this whole thing where radfems are so afraid to acknowledge that intersex people can be women. Like, even outside of their transphobia, especially their transmisogyny, they just have this idea that intersex = not woman. And I think I've figured out what brand of intersexism this is.
The parts of conservative society radfems love, specifically the bioessentialism, are the same parts that hate the idea of intersex people not only existing, but being mixed in with 'normal' people. With women, or those perceived as women, that pretty much means that we are entirely boiled down to the fact that we have a uterus. Hell, radfems even love using the term 'wombyn', and uterus imagery has become synonymous with feminism.
As such, these people, when they hear 'intersex', do not think of them as being capable of having a uterus. If you have a uterus, or have ever had a uterus, you are a woman. And so when conditions like NCAH, PCOS, and other non-obvious-at-birth conditions are referred to as intersex, this scares them, because people with these conditions can, in some cases, still have children. These disorders being intersex would mean that they cannot filter intersex women out into another sector of society by possession of a uterus, or ability to have children.
This hits people from two sides. On one side, you have the obvious, more widely acknowledged (within queer and specifically trans spaces) issue, which is that not everyone with a uterus is a woman, and not every woman has a uterus. This is, and still remains, an incredibly important point to combat transmisogyny; we cannot let feminism boil down to bioessentialism.
But on the other hand, these radfems are also being absolute idiots, even by their own standards, because they're alienating so-called 'true women'. Using myself as an example, I was born with perfectly normal AFAB anatomy. However, excessively high cortisol levels paired with insulin-resistance related hyperandrogenism made me develop a mixed puberty, and multiple doctors have agreed that my chance of having a normally-functioning uterus is shot. And let me tell you, there is fucking grief when you want to fight for women's rights, and do still consider yourself to partially be a woman, and the imagery around you is all surrounding something you can not have.
These people are scared because with non-obvious-at-birth intersex conditions, they cannot immediately recognize us and make us conform. By the time we're aware of our condition, we will have opinions on how to treat it. And so they try to take away what little community we have by saying we're not really intersex, and that these are normal conditions (especially those sentiments are targeted at female-related conditions like NCAH and PCOS), while simultaneously making their spaces incompatible with us.
I don't know, I got a bit ranty, but I'm getting really sick of being told that I'm "just like every woman" when I have not been allowed to be a woman since I was in 5th grade.
In case anybody is curious, there's an academic term for this phenomenon! "Temporarily perisex/endosex", coined by disability studies scholar Celeste Orr. It riffs on the idea of "temporarily able-bodied" from disability studies.
This is the final post in my little Intersex Tumblr compilation blog, but I hope you continue to engage with Intersex Tumblr! 💛💜💛
The #actually intersex tag is probably the most newbie-friendly tag for folks to follow! (Beware: the main #intersex tag is routinely spammed with porn and terfs).
I’d also like to highlight the following Tumblrs for more stories about intersex experience:
Also, @our-queer-experience has a bunch tagged with intersex, and you can read it here.
You may also want to have a look through the archives of @intersex-suppport, especially for any posts regarding the specific variation(s) that you think you might have!
To reduce overlap I intentionally tried not to reblog too much from those tumblrs, and focused instead on reblogging content from individual, personal blogs.
I’d like to thank everybody whose posts I reblogged here. Sharing your experiences publicly is important and reading posts like the ones I included here made a big difference for me when I was deciding if intersex was a label that made sense for me. 💛💜💛
For even more intersex experiences, I recommend:
Inter_view: an intersex podcast (7 one-hour episodes)
The Interface Project (21 profiles, each has a brief bio accompanied with a short video)
#MyIntersexStory (57-page brochure by OII Europe)
Intersex: Stories and Statistics from Australia (274-page report by IHRA)
The I in Us: intersex radio show (has LOTS of episodes)
If you’re questioning your intersex status, I echo others in this anthology that getting involved in the community is really beneficial. I personally found it made a big difference for me.
In addition to the links provided in the previous post by intersex-support, you can find intersex organizations via:
[this reblog is part of a structured guide for intersex questioning]
Stage 3. Immerse yourself in life stories.
The steps in this stage can be done in any order. But I think it's important to do (or at least seriously begin) this before doing the other stages. Take notes about which life stories resonate the most with you, and the variation labels of the people whose experiences you resonate with the most. You’ll want that for the next stage.
Consume at least five of the following, many of which are linked above:
All of: Inter_view: an intersex podcast (7 one-hour episodes)
At least seven episodes of: The I in Us. This is an intersex radio show that has LOTS of episodes so just pick whatever looks cool or is most recent.
All of: The Interface Project (21 profiles, each has a brief bio accompanied with a short video)
All of: #MyIntersexStory (57-page brochure by OII Europe)
All of: the posts on @intersex-culture-is (16 pages of short posts)
All of: the posts on @intersex-anthology (7 pages of posts of varying lengths)
All of: the posts on @the-intersex-experience (8 pages of mostly short posts)
All of: the posts on @intersex-confessions (9 pages of mostly short posts)
All of: Intersex: Stories and Statistics from Australia (274-page report by IHRA)
All of: Born Both by Hida Viloria (a memoir by an intersex activist. MAJOR CWs for graphic sexual violence starting in the VERY FIRST CHAPTER)
I think it's important to do this early on, because it will help you navigate intersex spaces (stage 5) and help you with navigating the diagnosis process.
interACT has made important changes to our Intersex Variations Glossary!
Intersex Definitions - We are raising intersex visibility, empowering young intersex advocates and promoting laws and policies that protect
It’s finally viewable as a web page! You can also link people to specific variations by clicking the variation and then copying/pasting that URL (For example, it will look something like https://interactadvocates.org/intersex-definitions/#clitoromegaly)
You can supplement that information from Intersex Wiki and DHDDMod's variations guide.
I think it’s important to consider differential diagnoses, which is why I say you should identify at least two specific variations you may have. Some variations are frequently misdiagnosed as other variations (e.g. NCAH is often misdiagnosed as PCOS) so don’t get too attached to any specific variation too quickly!
If you read through the InterACT variations glossary and none of the the variations described there sound like you, this should prompt some additional consideration. The glossary isn’t exhaustive (they say as much!), but it is comprehensive. This may be a stage in which you realize you’re not intersex, in which case congratulations: you’ve figured out an answer, and got to learn about intersex in the process!
What do you do when you just find out you're intersex? What's the next step or a good way to get involved with and learn more about the community?
Hi anon!
Welcome to the intersex community. I'm glad you're here.
There's a lot of different things you can do to start learning more, meet other intersex people, and get involved in advocacy.
This post has a long list of different articles, videos, and books all about intersex politics, art, and history. @intersexbookclub also runs a monthly intersex book club through Discord.
If you're in the US, there are multiple different intersex support groups you can get involved with. @interactyouth is an intersex organization for intersex people aged 13-29. They have a Discord server, monthly meetings, resources, and just recently hosted a youth retreat. InterConnect is an intersex organization for people of all ages, and also has virtual support groups and regional meet-ups. Intersex Justice Project is a groundbreaking intersex organization that prioritizes intersex justice, working specifically to provide resources for intersex people of color and fight against the intersection of colonialism, racism, and intersex oppression. Intersex Awareness is a grassroots group that does a poster campaign during every October for intersex awareness day. The LA LGBT center hosts virtual Club intersex meetings twice a month, and if you're local to LA, they also have some more resources. If you live in Houston, the Houston Intersex Society has tons of resources, including a lot of resources for intersex people of color, and is currently trying to get a physical space. If you're in Minnesota, Tigerrs (@tigerrsmn)has an intersex support group and a ton of other local intersex resources.
If you're outside the US, this post has a list of a lot of other intersex organizations in other countries.
If connecting with an organization feels too overwhelming, I think that following intersex people on social media can be a great way to start getting more connected to intersex topics! There's a lot of people linked on the very first post of articles and videos that I posted, and you can always look through the intersex tag on here. I know the intersex reddit is also fairly active.
If you like making art, I know that for some people, making intersex themed art can be a great way to feel more connected to your intersex identity.
It can absolutely be a journey where you learn a lot about yourself, unlearn a lot about society, and it can come with a lot of emotions! Definitely feel free to move at your own pace and access the resources that feel the most helpful to you, with no pressure to rush into anything before you're ready.
Sending you so much solidarity, and again, welcome to the intersex community!
[this reblog is part of a structured guide for intersex questioning]
Stage 5. Attend three events of intersex organizations.
They can be three meetings of the same organization, or you go to three events from different organizations, or two events of one organization and one event from another. The important thing is that these are pan-intersex and not a variation-specific event (e.g. an AIS-specific support group).
Unfortunately, many variation-specific organizations can harbour toxic attitudes towards transgender people and/or towards intersex identity. I do not recommend participating in any variation-specific communities until you feel comfortable with the intersex label.
You can find intersex organizations via:
[All the links in the post above!]
Intersexions Project Map
Intersex Wiki: Intersex organizations
It is normal to feel impostor syndrome when first participating in intersex community! Introduce yourself as that you’re questioning if you have <variations identified in last stage>.
I am deliberately putting this stage before pursuing any formal medical diagnosis because being in contact with these sorts of communities may be important for eventually getting advice on what tests to ask for, how to ask for it, and which physicians to talk to.
Support groups like InterConnect will generally be best positioned to aid with questioners, followed by local advocacy organizations (which often run support groups). Social organizations will generally not be structured to actively give you space to talk about your questioning.
Make an effort to fully participate in the events you attend! Try to make friends and engage meaningfully with any activity or discussion question that the event is being structured around. Don’t try to repurpose the event to be about you and your questioning. Stick around for the entire event. Try to identify cool people you’d like to get to know better and try to actually get to know them!
Intersex people need and deserve support from our LGBTQ+ allies!
This brochure (link) breaks down how intersex people are impacted by current regressive politics—bills and policies that harass students in sports, restrict necessary healthcare, ban access to accurate ID documents, and endorse nonconsensual intersex surgeries.
The brochure is free to print and distribute anywhere. You can share it at Pride events, with local LGBTQ+ groups, legislators, providers, teachers, EVERYONE—and insist on intersex justice!
You can supplement that information from Intersex Wiki and DHDDMod's variations guide.
I think it’s important to consider differential diagnoses, which is why I say you should identify at least two specific variations you may have. Some variations are frequently misdiagnosed as other variations (e.g. NCAH is often misdiagnosed as PCOS) so don’t get too attached to any specific variation too quickly!
If you read through the InterACT variations glossary and none of the the variations described there sound like you, this should prompt some additional consideration. The glossary isn’t exhaustive (they say as much!), but it is comprehensive. This may be a stage in which you realize you’re not intersex, in which case congratulations: you’ve figured out an answer, and got to learn about intersex in the process!
