What is intersex?

Last updated January 26th, 2021.

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What is the definition of intersex?

The intersex flag, a yellow background with a purple circle in the center, representing bodily autonomy and wholeness

The intersex flag, created in 2013 by Morgan Carpenter of Intersex Human Rights Australia.

The I in LGBTQIA+ stands for “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 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 people 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.

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. We are united by

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

Is intersex the same thing as being a “hermaphrodite?”

No. “Hermaphrodite” (or the shortened “herm”) should never be used to describe an intersex person. Some intersex people have reclaimed these words for themselves, but they are 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 very common.

About 1.7% of people are born intersex. (Compare that to a ~0.3% chance of having identical twins!) 1 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 is intersex surgery?

Graphic shows Banti, a young intersex person with brown skin and long dark hair in a flannel shirt, smiling, in front of text that says 'Surgery? Should have asked me.'

interACT Youth member Banti’s graphic from the #MyIntersexBody campaign, educating the public about infant intersex surgery.

Intersex surgeries are non-lifesaving procedures to change natural variations in genital appearance or reproductive anatomy. This is connected to ideas about gender and sexuality, and what “normal” looks like.

Intersex surgeries include

  • “reducing” or “repositioning” a clitoris (sometimes called clitoroplasty, or clitoral reduction or recession),
  • creating or altering a vagina (vaginoplasty),
  • moving a urethra that already works (hypospadias repair), and
  • removing the organs that would make sex hormones (gonadectomy).

Infant intersex surgeries often come with serious lifelong emotional and physical consequences, high complication rates, and reduced sexual function. When done without the individual’s informed consent, the United Nations considers these surgeries as human rights violations.

Most intersex surgeries are done when a child is under 2 years old. Surgeries to change intersex traits are often offered to parents, and considered acceptable by some doctors, when a child is very young. This means that people are being denied important choices about their own bodies—choices that can affect fertility, sexual function, and emotional well-being forever.

Some kids may grow up and want to change their bodies, or be glad that their bodies were changed. Many other kids and adults live with incredible pain and trauma because these choices were made for them. When we act early, we never know who will feel which way. Waiting is the best way to avoid irreversible harm.

All parents love their children, and only want what is best for them. Surgeries to change genital appearance may also be wrongly framed by a doctor as an emergency or necessity. Many parents are never told about the high risks of these surgeries, never connected to other families or affected adults, and never told that simply waiting is an option.

interACT is dedicated to supporting all parents and all intersex people without judgement.

How many intersex surgeries happen each year? Are there statistics on intersex surgery?

One intersex surgery without an individual’s consent is one too many.

As of 2021, no U.S. hospitals besides Lurie Children’s of Chicago and Boston Children’s have said that they don’t perform infant genital surgeries. Statistics are difficult to track, because U.S. hospitals are not required to report this information. However, as Kyle Knight, a Human Rights Watch researcher, told BuzzFeed in a 2020 article, “evidence of the rate of [infant intersex] surgeries and the hospitals performing them is hiding in plain sight.”

[Knight] cited a 2016 report published in the Journal of Pediatric Urology that found that 35 out of 37 parents of intersex children had “opted for cosmetic surgery on their children.” A 2017 paper in the Journal of Urology reported nearly identical rates of operations.

Are there any laws about intersex surgery? Is intersex surgery legal?

Infant intersex surgeries violate principles of informed consent, bodily autonomy, and self-determination. They may also be prohibited by female genital cutting laws and regulations against forced sterilization. Even still, some doctors claim parental consent is enough to change the appearance or function of an intersex infant’s genitalia, including cosmetic alterations to the clitoris.

Some countries are taking steps to end infant intersex surgery. For example, the country of Malta and the Indian state of Tamil Nadu explicitly prohibit intersex surgeries without the individual’s informed consent. In 2019, the European Parliament passed a resolution calling on all member states to end surgeries. Portugal, France, and Uruguay have each passed laws to protect intersex people, but which may still stop short of pausing non-consensual surgeries.

Many medical organizations agree that intersex people must be able to make decisions about their bodies, including the American Academy of Family Physicians, GLMA: Health Professional Advancing LGBTQ Equality, the American Counseling Association, and two state-level medical societies (Massachusetts and Michigan).

In the United States, at least 5 states have seen bills to prohibit infant intersex surgery. None have passed yet. In 2018 California passed a non-binding resolution, SCR-110, which was the first successful piece of U.S. legislation to acknowledge intersex human rights violations and harm. Most legislation that interACT sponsors would delay unnecessary medical intervention, including surgeries, to give people choices about their own bodies. If you’d like to help and receive updates, you can sign up for email alerts.

What is interphobia?

Interphobia describes prejudice towards intersex people. This phobia can show itself individually, such as through someone’s personal negative judgment towards intersex people, or structurally, such as the practice of intersex genital mutilation.

Some people prefer the term “intersexism” because it more specifically points to sexism as a root cause. Others may use “endosexism” which suggests the problem is treating endosex bodies (see below) as preferable to intersex bodies.

Read more about interphobia in practice.

What is endosex?

Endosex, also known as perisex or dyadic, refers to a person who is not intersex.  An endosex person may have innate physical sex characteristics that are expected for either males or females. If you were born without any variations in your sex traits you might be endosex.

Terminology to identify non-intersex people is important. Rather than suggesting that someone is either intersex or “typical/normal,” we can more accurately and less judgementally state that someone is either intersex or endosex. It also allows us to distinguish the differences in our lives. Identifying those differences makes it easier for intersex people to tell our own stories on our own terms, without them being rewritten by endosex people.

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. You can view our glossary of intersex variations here. Below  are a few examples, and their 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 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)

If you’re asking about intersex genitalia—and please don’t ask real people invasive personal questions—there is no standard answer.

Like all human body parts, genitals come in all shapes and sizes. All genital tissues are homologous, meaning that two things share the same origin. For example, the clitoris and penis are homologous parts when a baby develops. With certain cues, the tissue will grow larger to become a penis. Without them, it will remain the smaller clitoris. Some intersex people will have a size that is naturally inbetween. What some people refer to as a “micropenis” is also related to this spectrum.

No human can develop both a complete penis and vagina. For more information on intersex bodies, see our definitions page.

What medical conditions are considered intersex?

As the Intersex Society of North America wrote over 20 years ago:

Nature doesn’t decide where the category of “male” ends and the category of “intersex” begins, or where the category of “intersex” ends and the category of “female” begins. Humans decide.

Intersex traits show that trying to sort all human bodies into two categories is not simple. When is a difference big enough to “count” as intersex? Who gets to decide? Historically, doctors were given authority—but their decisions were biased toward surgery.

Consider the case of a baby born with a visibly large clitoris. Currently, identifying a particular intersex trait might be a cue for doctors to offer clitoral reduction surgery to the child’s family. Public attitudes are quickly shifting. Regardless of how the underlying cause of an intersex difference is labeled, many in medicine agree that intersex surgeries must be chosen by the individual.

In response, some doctors are now arguing that some of the most common causes of differences like a large clitoris are “not intersex,” in order to continue offering surgeries. Terminology and classification may shift, but individuals’ rights to make choices about their own bodies still apply.

Is an intersex baby healthy?

Book cover of Raising Rosie

Raising Rosie, by Eric and Stephani Lohman, is a memoir and parenting guide. The Lohmans felt pressured to agree to unnecessary clitoral and vaginal surgery for their child.

The short answer: yes! Intersex differences in and of themselves (for example, differences in genital appearance) are perfectly healthy and natural. Surgery is generally only urgently necessary if an infant can’t pee, and that is very rare! Everything else can wait.

Intersex traits are natural human variations, not disorders. The intersex movement wants this understanding. This is similar to the way that LGB and T people have fought against being seen as mentally “disordered.” While intersex traits are nothing to be ashamed of, there are sometimes other accompanying issues to keep in mind.

Some intersex variations come with issues making or regulating hormones. Infants born with Congenital Adrenal Hyperplasia (CAH) often have a visibly larger clitoris. CAH also causes life-threatening issues related to how the body makes and responds to stress hormones. Surgery to reduce a clitoris or create a vagina will never address the separate life-threatening hormone issues. While genital surgery must be an individual’s choice, the hormone management issues associated with CAH must be taken very seriously.

In some cases, intersex gonads may carry real cancer risk. The actual risk level varies by medical diagnosis. Cancer risk in intersex gonads is generally not as high as some doctors used to think. For example, streak gonads (tissue that did not develop into ovaries or testes) have a relatively higher risk of malignancy and may need to be removed. By contrast, we now know that internal testes in individuals with Androgen Insensitivity are much lower risk, and can be watched and kept in the body.

If a person’s ovaries or testes are removed, or if they are born without organs that make sex hormones, they will not go through puberty on their own. A lack of sex hormones affects many functions of the body. It is especially important to think about bone health. Intersex people without gonads who don’t get adequate hormone replacement therapy may be at risk for osteopoenia as early as in their 20’s.

Above all, many health problems are the direct result of unnecessary intersex surgeries. Surgery creates scar tissue. Scar tissue affects appearance, sexual function, and even fertility, as it can impact being able to have penetrative sex. Removing ovaries or testes prevents a natural puberty. It also makes a person permanently dependent on external hormones. Infant clitoral surgeries are proven to reduce sexual sensation. Surgeries to create a vagina or move a hypospadic urethra are similarly invasive, with very high complication rates.

Some infant intersex surgeries increase the lifelong risk of UTIs. Many people require multiple surgeries to feel relief from issues caused by their first infant surgery. These are highly personal decisions best left up to the individual.

How do I know if I’m intersex?

Intersex advocates Sean Saifa Wall, Pidgeon Pagonis, Emily Quinn, and Alice Alvarez created an iconic Buzzfeed video about their experiences.

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:

  1. At birth, when another person sees genital differences;
  2. At puberty, when changes happen too early, in unexpected ways, or not at all;
  3. In adulthood, when infertility or other problems reveal internal differences;
  4. In adulthood, when 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.

Most intersex people have been shamed because their genitals or reproductive anatomy are different. Many, but not all, experience medical pressure to change their bodies. Often this pressure starts with doctors offering parents surgeries or hormone treatments for their children.

Not all intersex people have genital differences. Not all intersex people have medical diagnoses or records. (And suggesting that they should ignores the fact that intersex people have been around much longer than the medical industry we know today!)

A person will generally know if they have intersex traits. The clues are in bodies and past experiences, whether or not those experiences are medical. However, many people who do have differences in their sex traits may never hear the word intersex, or may not know how broad the word can be. Some people reject the word or use other terms.

Want to know more? Check out “I Think I May Be Intersex” by TIGERRS (Transgender, Intersex, Gender-Expansive Revolutionary Resources & Services).

Can intersex people have children or get pregnant?

The short answer is: maybe. Like any person, it depends on body parts. (And sometimes, help from technology.)

Making an embryo requires sperm from testes to meet an egg from an ovary. After that, the fetus needs a place to grow—usually that’s a uterus. These days, there are many ways for all of that to happen, even for non-intersex people. It is not possible for any human to reproduce without another person, including with donation and medical technology!

Can intersex people reproduce?

If an intersex person has a penis and testes that make sperm, they may be able to cause a pregnancy. Some intersex people have a vulva, vagina, and internal testes. Those testes might contain tissue that could be used to reproduce, with technology’s help in the future.

If an intersex person has a uterus, they may be able to carry a pregnancy. If they have ovaries or ovotestes, that tissue could be used for reproduction in some cases. Some intersex people do have ovaries, a uterus, and a vagina, and could get pregnant by contact with sperm.

Fertility is different for each intersex person. Many, but not all, intersex variations do result in infertility. Plenty of other intersex people have had their fertility taken away by non-consensual surgeries to make their bodies appear “normal.” Examples include when internal testes are removed, or when other genital surgeries create scar tissue that makes penetrative sex painful or impossible. This is a sensitive topic. Let intersex people share at their own pace, if they choose.

I’m an intersex person. How can I connect with others?

Welcome to the 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 United States. See our intersex organizations page for known intersex groups in other countries.

Publicly searchable intersex support groups on Facebook:

Many other groups are private or require a referral. There are also some groups that offer spaces that are specific to medical diagnosis, e.g. Androgen Insensitivity, Hypospadias, MRKH, etc. To find information about other groups, we recommend joining a public group first.

What is interACT’s advice for parents and doctors caring for intersex children?

Families need emotional and psychological support, not pressure to make decisions about surgery. It is essential to be open and honest about bodily differences with your child and family. Anything else teaches children that their bodies are shameful. The more support you can find, the better. Look for understanding providers. Ask to be connected to other families, as well as adults who share traits with your child.

Like any child, an intersex infant can be raised socially as a boy or a girl without unnecessary surgery. Decisions around surgery that is not life-saving should be delayed. See interACT’s intersex brochures and resources by topic.

What should I know about surgery on my child’s clitoris, vagina, urethra, or testicles?

Know Your Rights brochure for parents of intersex children

As long as your baby has an opening to pee from, there is no rush to make a decision. If your doctor is recommending a surgery (like a hypospadias repair, vaginoplasty, clitoroplasty, or gonadectomy) that is not immediately life-saving, always ask:

  1. Why at this age?
  2. What are the benefits?
  3. What are the risks?
  4. What happens if we wait and see?

Our Know Your Rights brochure for parents can help. Also see our resource explaining why the most common medical arguments for early surgery are misinformed. Surgery comes with high risks, and can seriously affect sexual function, fertility, and emotional health. Intersex adults have asked for decades: please, let us decide.

We recommend asking to speak with other parents, as well as adults who have and have not had the surgery in question. If your doctor cannot offer those contacts, you can always ask more questions. If you feel your doctor is not respecting your requests, you should seek another provider.

Some kids may grow up and want to change their bodies, but still be glad the decision was theirs to make. Many other kids and adults live with serious pain and trauma because these choices were made for them. When we act early, we never know who will feel which way. Waiting is the best way to avoid irreversible harm.

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