What Is Intersex & Frequently Asked Questions

Intersex is an umbrella term for differences in sex traits or reproductive anatomy. Learn more from interACT.

interACT is an invaluable educational resource and advocate for individuals with intersex traits. All our information on intersex was donated from interACT. To learn more visit their website.

What Is the Definition of Intersex?

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 that can occur in genitalia, hormones, internal anatomy, or chromosomes, compared to the usual two ways that human bodies develop.

Some intersex traits are noticed at birth. Others don’t show up until puberty or later in life. Intersex individuals often face shame — or are forced or coerced into changing their bodies, usually at a very young age. Most surgeries to change intersex traits happen in infancy.

Like any child, an intersex infant can be raised socially as a boy or a girl without unnecessary surgery. Decisions around surgery that are not life-saving should be delayed.

The word intersex also invokes a community. Intersex people are diverse, coming from all socioeconomic backgrounds, races, ethnicities, genders and orientations, faiths, and political ideologies.

Intersex individuals are united by:

the experiences of living with variations in sex traits
the belief that these differences are a natural part of human diversity
the idea that people deserve their own choices about their own bodies

Is Intersex the Same Thing as Being a “Hermaphrodite?”

No. “Hermaphrodite” should never be used to describe an intersex person. Some intersex people have reclaimed this word for themselves, but it is usually considered a slur. There are many ways to have an intersex body, but it is not possible for one person to have both a fully developed penis and vagina.

The “h word” comes from mythology. It might suggest that intersex people are monsters, or not of this world. Many intersex people still see this slur used in their medical records.

Is Intersex the Same Thing as “Disorder of Sex Development”?

“Disorder” or “difference of sex development” (DSD) is still a common medical term for intersex traits. Many intersex people reject the term “DSD” because it supports the idea that their bodies are wrong, or up to doctors to “fix.” Advocates in the United States often bring up the fact that until 1973, being gay was considered a mental disorder. Many natural human differences have been framed as medical problems, until communities fought for acceptance.

interACT generally does not use the term DSD. See interACT’s statement on DSD terminology.

How Common Is Intersex?

How many intersex people are born each year? What are the statistics? Even in countries where most births happen in hospitals, these are hard questions to answer. This is largely because no one is required to track this information. But we do know that being intersex is more common than one might think.

About 1.7% of people are born intersex (compare that to a ~0.3% chance of having identical twins). One in 2,000 babies (0.05% of humans) are born with genital differences that a doctor might suggest changing with unnecessary surgery.

These estimates are based on work by Dr. Anne Fausto-Sterling, who reviewed medical literature from 1955-1998 (Sexing the Body: Gender Politics and the Construction of Sexuality, 2000).

What Causes Intersex?

Most intersex traits are random, although some do run in families. To be technically specific, some reasons why intersex traits might develop include:

translocation or deletion of the SRY (“Sex-determining Region Y”) gene,
variations in the AR (“Androgen Receptor”) gene, an enzyme deficiency leading to increased androgen production, and
contact with outside hormones during pregnancy.

There’s a long history of abuse in attempts to prevent or “cure” intersex differences. “Why” is a very common question when it comes to human difference. Science is always looking for something to explain natural variation: a gay gene, transgender brain difference, cause of autism, etc. But as intersex people know, “why” can be a very dangerous question. When differences can be seen or measured on bodies, they can be changed. Surgeries to change intersex traits often happen at a young age, without a person’s knowledge or consent.

What Does Intersex Look Like?

There is no way to “look” intersex. Every person is different. There are over 40 medical terms for the different ways sex anatomy might develop. Here are a few examples, and their common traits.

Intersex Examples & Common Traits

Medical Term	Chromosomes	External	Internal	Puberty
Complete Androgen Insensitivity	XY	Vulva, clitoris	Testes, no uterus, sometimes partial vagina, or complete vagina	If testes are left alone, body goes through puberty via converting testosterone into estrogen
Partial Androgen Insensitivity	XY	Vulva and visibly large clitoris, or other differences	Testes, no uterus, varies	If testes are left alone, body has varying levels of response to testosterone
Congenital Adrenal Hyperplasia	XX	Vulva (labia may be fused), often visibly large clitoris	Ovaries, uterus, sometimes partial vagina or complete vagina	May be early, higher testosterone can lead to features such as facial hair, changed fat distribution
Swyer’s	XY	Vulva, clitoris	Streak gonads, uterus, sometimes partial vagina or complete vagina	No puberty because streak gonads do not produce any hormones
Klinefelter’s	XXY	Penis, small testicles	May have low sperm count	Low T may cause breast development or other atypical features, may be very tall
Hypospadias	Varies by cause (often XY)	Penis (with urethral opening somewhere other than the tip) and testicles; or small penis (with urethra near base or perineum) and open labioscrotal folds; or other differences		Varies by cause (often typical testosterone puberty)

How Do I Know If I’m Intersex?

Could a person be intersex without knowing it? Without a medical diagnosis? Maybe. It has certainly happened before.

These are the most common ways for a person to notice that their body is different.

At birth, when another person sees genital differences
At puberty, when changes happen too early, in unexpected ways, or not at all
In adulthood, when infertility or other problems reveal internal differences
In adulthood, after learning that adults covered up childhood medical interventions

Most intersex people can point to recognizable patterns in their bodies and social experiences. These patterns generally hold up across different groups of intersex people, and across medical terms for different intersex variations.

Gender Identity & Intersex

Being intersex is different from being transgender or nonbinary. Someone who is transgender has a gender (such as male, female, or nonbinary) that is different from what was assumed when they were born.

Someone who is intersex developed one or more bodily characteristics that don’t fit neatly into stereotypes about “male” or “female” bodies.

Someone can be both intersex and transgender, but being intersex doesn’t automatically make someone transgender or nonbinary, just like being transgender or nonbinary doesn’t mean that someone is intersex.

Intersex Resources & Support

Welcome to the intersex community! You are not alone. There are many intersex support groups, often on Facebook, where intersex people come together to connect. There is also InterConnect, who hosts a yearly in-person conference in the U.S. Visit Intersex Organizations – interACT for known intersex groups in other countries.

Intersex Support Groups on Facebook (publicly searchable):

interACT offers iSpace,a Facebook peer support group for people ages 13-29.
There is a support group for caregivers of intersex children of all ages and locations.
Intersex Fam is a general discussion group for intersex people AND allies.

In the meantime, if you need more support, interACT has worked with the following organizations that serve LGBTQIA+ youth, and who have some knowledge and exposure to intersex issues.

Additional interACT Intersex Resource Guides

This article was originally published on interACT and only minimally edited for clarity and length. Read the article in its original publication.

What Is Intersex?