Could I Be Intersex?

People born with genitalia, hormones⁠ (hormones: Chemicals – via our endocrine system – that send messages across our bodies and brains. They both naturally exist and can also be made in a lab.) , or unexpected combinations of reproductive anatomy⁠ (anatomy: The body, parts of the body, or physical structure of organisms like people, animals or plants.) have been around since the beginning of time. Some use the word intersex⁠ (intersex: Having reproductive and/or sexual anatomy that doesn’t seem to, or isn't understood to, fit typical definitions of female or male, and/or chromosomal combinations other than XX or XY.) to describe their bodies.

Depending on your culture, your family, your body, and your relationship⁠ (relationship: An ongoing interaction or association with another person, place or thing.) to medical experiences, you’ll have to decide if the word intersex feels right. To do this, you’ll have to learn about how different communities use the word.

People use the word intersex in all kinds of ways. Here are four:

1. a loose category for 40+ diagnoses that industrialized medicine calls “disorders of sex⁠ (sex: Different things people choose to do to actively express or enact sexuality and sexual feelings; often this involves genitals, but not always. ) development,”
2. an adjective for a body part at a midpoint, e.g. “intersex genitalia,” or “intersex chromosomes,”
3. a community label for people who share experiences—like discrimination or struggles with infertility—because of their genitalia, hormones, puberty experiences, or other sex traits,
4. an identity⁠ (identity: The defining character or personality of an individual; who we feel like we are as a person.) linked to LGBTQ⁠ (LGBTQ: L = lesbian, G = gay, B = bisexual, T = transgender, Q = queer or questioning. Additional letters sometimes added include U = unsure, I = intersex, P = pansexual, A= asexual, S = straight allies.) + and other resistance movements.

Some people like the word intersex. Some people don’t. Made popular in North America in the 1990s, the word intersex traces back to a German researcher who studied sex in moths nearly a century earlier. It is related to several other words:

• Hermaphrodite, from Greek mythology. This word is controversial. Some intersex people’s medical records use this word to stigmatize their bodies. Some consider it a slur, while others want to reclaim it for themselves.
• DSD, Disorder or Difference in Sex Development, made popular around 2006 and a term still used in some medical settings.
• VSC, Variations in Sex Characteristics, a term more popular in Europe.
• Any of the 40+ Greek- or Latin-origin medical terms that doctors created to group diagnoses that they might place within intersex: congenital adrenal hyperplasia, hypospadias, androgen insensitivity syndrome, Klinefelter’s syndrome, etc.

Intersex people come from all backgrounds, sexualities, and identities. Some have faced horrific medical violence to change their bodies as young children. Some grow up without even knowing that their bodies are different, or without knowing until around or after puberty⁠ (puberty: The process of physical and sexual changes from childhood to adulthood, initiated by hormone signals from the brain to the gonads. ) . What unites us more than our anatomy is facing shame for breaking cultural and/or medical expectations around appearance, reproduction, and what’s considered a “normal” body.

If this is feeling right to you, welcome! Being intersex in this world can sure be hard, but it can also lead you to beautiful relationships. Words can help people find each other. Intersex communities have built solidarity and self-acceptance together since the internet enabled them to connect in the 1990s.

How do I know if I’m intersex?

The short answer is this: intersex bodies are built differently, particularly compared to the usual paths people take through puberty.

Most people’s bodies grow in one of two basic ways. You either are born with XX⁠ (XX: A combination of chromosomes identified within the XY sex-determination system as female.) chromosomes as well as ovaries⁠ (ovaries: The reproductive organs that contain and release ova.) , a vulva⁠ (vulva: The name for the external genitals of people assigned female at birth. The vulva includes the mons, external clitoris, inner and outer labia, fourchette and perineum.) and a typical estrogen⁠ (estrogen: A steroid hormone found in the bodies of all people, produced in the ovaries and the adrenal glands.It is involved in puberty, menstruation, pregnancy, mood, bone health, and other things across the body and lifespan .) -rich puberty, or you are born with XY⁠ (XY: A combination of chromosomes identified within the XY sex-determination system as male.) chromosomes and testes⁠ (testes: Reproductive glands of people with penises. They sit outside the body and are contained within the scrotum.) , a penis⁠ (penis: One of the two external reproductive organs of people often assigned male at birth.) and a typical testosterone⁠ (testosterone: A steroid hormone produced in the testes and in the ovaries. Is responsible for sperm production, and influences sexual desire, arousal and bone health. Is also blamed for for a lot of things it isn’t actually responsible for.) -rich puberty. Intersex bodies switch up, skip, or change some of these steps.

Someone might know they are intersex because of how their genitals⁠ (genitals: Body parts that are generally, culturally, scientifically or personally considered to be external sexual or reproductive organs.) looked when they were born. This is a small minority of intersex people. An intersex baby might have a larger-than-average clitoris⁠ (clitoris: A sexual organ both external and internal on the vulva and inside the pelvis of those often assigned female at birth that is similar to the penis, but serves no other known purpose besides providing sexual pleasure.) and a vulva, a very small penis, or something that looks in between the two most basic ways we categorize genitals. They might be born without ovaries or testes, without vaginal depth, or with their urethra⁠ (urethra: The urinary tract, where people pee from. On a penis, the opening to the urethra is at the head of the penis; on a vulva, the opening is above the vaginal opening and below the external clitoris.) coming out⁠ (out: Short for ‘out of the closet’. When someone’s LGBTQ+ identity is known to other people.) in a different place. Parents are still offered major surgeries to “fix” these differences, and not everyone tells the truth to their children. Finding out you were lied to at any point in your life can feel devastating.

Someone might find out they are intersex at or around puberty. They might start puberty very early, never start at all, start late, or develop in unexpected ways, like when someone with a penis develops more breast⁠ (breast: Glandular tissue, fat, connective tissue and skin on the chest.) tissue than usual due to higher estrogen levels in their bodies, or when someone with a vulva develops facial hair due to higher testosterone. High testosterone can also make a clitoris grow larger at puberty.

Because some intersex differences are inside the body, like ovaries or chromosomes, a person might never notice, or might only find out about those differences when they have sex or try to get pregnant.

The stigma around intersex bodies is dangerous. Because of presumed associations with LGBTQ+ identities, parents and doctors finding intersex anatomy can lead to selective abortion⁠ (abortion: A procedure to intentionally end a pregnancy before a birth. Miscarriage is also sometimes called "spontaneous abortion," even though it is usually not intended.) , infanticide, forced genital surgeries, and all kinds of discrimination and misinformation. 

All bodies and genitals look quite different, and all human genitals are often much more diverse than people realize, whether a doctor labels a person intersex or not. Since everyone has sex traits, where is the line between intersex and not intersex? Who gets to decide?

Is intersex a medical condition?

Human sex diversity has been made into a medical condition. Let’s say a baby is born with a large clitoris and genitals that, to adults⁠ (adults: People whose age in years exceeds the legal age of majority, people considered to be adults by law, or people who a culture or individual considers to have reached an adult stage of life.) , look halfway between labia⁠ (labia: On the vulva, both inner (labia minora) and outer (labia majora) sets of skin with sensory nerve endings which surround the vaginal opening.) and a scrotum. Adults might panic about how to raise this child and look to genital surgery not because it’s needed for their child’s health or well-being, but because of their own discomfort. As long as a baby can pee and isn’t in any kind of pain, this kind of anatomy is usually not life threatening or unhealthy.

Say a cisgender⁠ (cisgender: Describes people who have a gender identity which is traditionally thought to “match” their assigned sex. For instance, someone who was assigned male at birth who identifies as a man. Often used in relation to transgender.) woman with high testosterone, like from Polycystic Ovary Syndrome, grows a beard. If she’s fine with that, she might choose to do nothing and keep her beard. If she isn’t, she can go to medicine for help, like anti-androgen medication to stop the beard growth. What we might consider a “medical problem” isn’t only about pain. Medical problems are shaped by culture and ideas.

While having unique or different-than-average sex anatomy isn’t necessarily a problem for doctors to fix, intersex people still have needs. Intersex people need hormones and surgeries in some of the same ways as trans people. We have higher rates of disabilities and health issues, often due to minority stress. We have to interact with medical systems that are ignorant of, or hostile to, our bodies.

Some people think that intersex is a label that only doctors can give out, or that a person has to have a medical diagnosis to be able to claim the word. Suppose a person knows they have unique genitalia from the time they are a small child. Should they have to suffer forced surgery in order to claim the word intersex? Influenced by disability and autism conversations about self diagnosis, many intersex people believe that flexibility around labels leads to understanding and community. Intersex — as a term or a way to identify yourself — is about so much more than a person’s relationship to medicine or suffering.

Intersex movements around the world advocate for depathologization. This means that communities, not just medical industries or governments, get a say about how their own problems are defined. Other depathologization movements have challenged ideas that a person was “medically disordered” for being gay, a woman with opinions, or Black and against racism. Many people who use the word intersex do so because of these political histories.

I’m trans. Can my doctor do chromosomal testing to see if I have an intersex variation?

As anti-trans laws sweep across the world, this will become a much more common question. Most anti-trans bills are written with exceptions for forced surgeries on intersex children, usually using words like “verifiable genetic disorders.” Navigating trans care is different for people who are also intersex. It is not clear how these laws might be interpreted for adults.

Doctors have historically used intersex traits to police who can access trans care. So it’s understandable that some trans people would seek an intersex label. The two communities are often pitted against each other. Trans people are not allowed to change their bodies – certainly not without a high burden of physical “proof” – and intersex people are not allowed to keep their bodies –lest they grow up to be gay or trans. 

We live in a complicated world. Some people seek an intersex diagnosis because they feel comfort in knowing more scientific information about their bodies. People who want to be parents someday might want to know more about their genetics. When it comes to accessing trans healthcare, seeking a physical intersex “cause” could support the idea that how we are born should determine our options in life. Is seeking intersex status supporting the idea that anatomy, such as chromosomes, is causal to gender identity⁠ (gender identity: A person's own sense of whether and in what sense they feel they might be a man, a woman, neither, a mixture of genders, or another gender entirely.) ? Chromosomes explaining gender identity is a frequent, debunked argument made by those working to take away trans healthcare access.

Think about what measuring intersex status might mean to you either way. What would it mean if a doctor labeled you intersex? What would it mean if they didn’t? Learn about possible questions to ask doctors about intersex status. Talk to peers and trusted adults about how an intersex diagnosis might interact with other care you need.

Intersex peer support groups on platforms like Facebook tend to be private or hidden for safety. Get connected through national support networks such as interConnect, interACT’s iSpace youth group for ages 13-29, or an intersex organizing group in your country.  Scarleteen’s message boards are another resource for discussing this article and connecting with others.