Intersex is an umbrella term encompassing variations in sex characteristics, and at WHAT.EDU.VN, we aim to provide clarity and support for understanding this complex topic. These variations can involve differences in genitalia, hormones, internal anatomy, or chromosomes. Discover expert insights and answers to your questions about sex development and intersex conditions. Explore topics like intersex traits, intersex variations, and differences in sex development.
1. What is the Definition of Intersex?
Intersex is a broad term used to describe individuals born with or developing variations in their sex characteristics. These differences can manifest in various ways, affecting genitalia, hormones, internal reproductive organs, or chromosomes. These variations don’t always present at birth; some may become apparent during puberty or later in life.
The term intersex not only describes a biological reality but also represents a community of individuals. This community is diverse, encompassing people from all socioeconomic backgrounds, races, ethnicities, genders, orientations, faiths, and political ideologies. What unites them is their shared experience of living with variations in their sex traits, the belief that these differences are a natural part of human diversity, and the conviction that everyone has the right to make their own choices about their own bodies.
1.1. Is Intersex the Same Thing as Being a “Hermaphrodite?”
No, the term “hermaphrodite” or “herm” should never be used to describe an intersex person. While some intersex individuals have reclaimed these words, they are generally considered derogatory. It’s essential to understand that while there are many ways to have an intersex body, it is not possible for a person to possess both a fully developed penis and vagina.
The term “hermaphrodite” originates from mythology and can perpetuate the idea that intersex people are somehow monstrous or not of this world. It is disheartening that this offensive term still appears in some intersex people’s medical records.
1.2. Is Intersex the Same Thing as “Disorder of Sex Development?”
The term “disorder” or “difference of sex development” (DSD) is a medical term used to describe intersex traits. However, many intersex people reject the term “DSD” because it implies that their bodies are inherently wrong or need to be “fixed” by doctors. Advocates often point out that homosexuality was once considered a mental disorder until communities fought for acceptance. Many natural human differences have been framed as medical problems until communities fought for acceptance.
At WHAT.EDU.VN, we recognize the importance of respectful and inclusive language and aim to use terminology that affirms the dignity and diversity of all individuals.
2. How Common is Intersex?
Determining the exact number of intersex people born each year is challenging, even in countries with high rates of hospital births. This is primarily because there is no requirement to track this information. However, existing data indicates that being intersex is more common than many people realize.
Approximately 1.7% of people are born intersex. To put this into perspective, the chance of having identical twins is around 0.3%. Around 1 in 2,000 babies (0.05% of humans) are born with genital differences that some doctors might suggest changing with unnecessary surgery.
These estimates are based on the research of Dr. Anne Fausto-Sterling, who reviewed medical literature from 1955-1998. (Sexing the Body: Gender Politics and the Construction of Sexuality, 2000)
3. What Causes Intersex?
Most intersex traits occur randomly, although some can run in families. 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
- Enzyme deficiency leading to increased androgen production
- Contact with outside hormones during pregnancy
3.1. The Dangers of “Why?”
There’s a troubling history of abuse in attempts to prevent or “cure” intersex differences. The question “why” is often asked 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.
It’s crucial to approach the topic of intersex with sensitivity and respect, recognizing that variations in sex characteristics are a natural part of human diversity.
4. What is Intersex Surgery?
Intersex surgeries are non-life-saving procedures performed to alter natural variations in genital appearance or reproductive anatomy. These surgeries are often rooted in societal ideas about gender and sexuality and what is considered “normal.”
Intersex surgeries can include:
- “Reducing” or “repositioning” a clitoris (clitoroplasty, clitoral reduction or recession)
- Creating or altering a vagina (vaginoplasty)
- Moving a urethra that already works (hypospadias repair)
- Removing the organs that would make sex hormones (gonadectomy)
Infant intersex surgeries can have severe lifelong emotional and physical consequences, high complication rates, and reduced sexual function. When performed without the individual’s informed consent, the United Nations considers these surgeries human rights violations.
4.1. The Importance of Informed Consent
Most intersex surgeries are performed when a child is under 2 years old. These surgeries are often offered to parents and considered acceptable by some doctors when a child is very young. This practice denies individuals the opportunity to make important choices about their own bodies, choices that can affect fertility, sexual function, and emotional well-being forever.
While some individuals may grow up and want to change their bodies or be glad their bodies were changed, many others live with incredible pain and trauma because these decisions were made for them. Therefore, waiting is the best way to avoid irreversible harm.
5. How Many Intersex Surgeries Happen Each Year?
Even one intersex surgery performed without an individual’s consent is one too many.
As of 2021, only Lurie Children’s of Chicago and Boston Children’s in the U.S. have publicly stated that they do not perform infant genital surgeries. Statistics on intersex surgeries are difficult to track because U.S. hospitals are not required to report this information. However, as Kyle Knight, a Human Rights Watch researcher, noted, evidence of the rate of infant intersex surgeries and the hospitals performing them is hiding in plain sight.
A 2016 report published in the Journal of Pediatric Urology 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.
6. Are There Any Laws About Intersex Surgery?
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. Despite this, some doctors claim parental consent is sufficient to alter the appearance or function of an intersex infant’s genitalia, including cosmetic alterations to the clitoris.
6.1. Global Efforts to End Infant Intersex Surgery
Some countries are taking steps to end infant intersex surgery. For example, 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 these surgeries. Portugal, France, and Uruguay have also passed laws to protect intersex people, but these laws may still fall short of fully halting non-consensual surgeries.
Many medical organizations, including the American Academy of Family Physicians and GLMA: Health Professional Advancing LGBTQ Equality, agree that intersex people must be able to make decisions about their bodies. The US Department of Health and Human Services released a report on Intersex Health Equity condemning medically unnecessary, nonconsensual intersex surgeries.
In the United States, at least 5 states have seen bills to prohibit infant intersex surgery, but 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.
7. What is Interphobia?
Interphobia refers to prejudice and discrimination against intersex people. This phobia can manifest individually, such as through personal negative judgments, or structurally, such as through the practice of intersex genital mutilation.
Some people prefer the term “intersexism” because it more specifically highlights sexism as a root cause. Others may use “endosexism,” which suggests the problem is treating endosex bodies as preferable to intersex bodies.
8. What is Endosex?
Endosex, also known as perisex or dyadic, refers to a person who is not intersex. An endosex person typically has innate physical sex characteristics that align with expectations for either males or females.
Using the term “endosex” is important because it avoids suggesting that someone is either intersex or “typical/normal.” Instead, it allows for a more accurate and less judgmental way of stating that someone is either intersex or endosex. This distinction makes it easier for intersex people to tell their own stories on their own terms, without them being rewritten by endosex people.
9. What Does Intersex Look Like?
There is no specific “look” associated with being intersex. Every person is different. There are over 40 medical terms for the different ways sex anatomy might develop.
| 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 | Penis (with urethral opening somewhere other than tip) and testicles; or small penis | Varies | Varies |
9.1. Understanding Genital Variation
If you’re wondering about intersex genitalia—and please refrain from asking invasive personal questions to real people—there is no standard answer.
Like all human body parts, genitals come in all shapes and sizes. All genital tissues are homologous, meaning they share the same origin. For example, the clitoris and penis are homologous parts during fetal development. Depending on certain cues, the tissue will grow larger to become a penis. Without those cues, it will remain the smaller clitoris. Some intersex people will have a size that is naturally in between. What some people refer to as a “micropenis” is also related to this spectrum.
It’s important to remember that no human can develop both a complete penis and vagina.
10. What Medical Conditions are Considered Intersex?
As the Intersex Society of North America stated 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 highlight the difficulty of sorting all human bodies into two categories. The question of when a difference is significant enough to “count” as intersex is complex and subjective. Historically, doctors were given the authority to make these decisions, but their judgments were often biased toward surgery.
10.1. The Importance of Individual Rights
Consider a baby born with a visibly large clitoris. In the past, this might have prompted doctors to offer clitoral reduction surgery. However, public attitudes are changing, and many in medicine now agree that intersex surgeries must be chosen by the individual, regardless of the underlying cause of the intersex difference.
While terminology and classification may shift, individuals’ rights to make choices about their own bodies remain paramount.
11. Is an Intersex Baby Healthy?
The short answer is yes! Intersex differences, in and of themselves, are perfectly healthy and natural. Surgery is generally only urgently necessary if an infant can’t pee, which is very rare.
Intersex traits are natural human variations, not disorders. This understanding is similar to how 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.
11.1. Hormone Regulation and Cancer Risk
Some intersex variations can involve issues with hormone production or regulation. For example, infants born with Congenital Adrenal Hyperplasia (CAH) often have a visibly larger clitoris. CAH can also cause life-threatening issues related to how the body makes and responds to stress hormones. It’s crucial to remember that surgery to reduce a clitoris or create a vagina will never address the separate life-threatening hormone issues.
In some cases, intersex gonads may carry a real cancer risk. However, the actual risk level varies by medical diagnosis and 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. In contrast, internal testes in individuals with Androgen Insensitivity are now known to have a much lower risk and can be monitored and kept in the body.
If a person’s ovaries or testes are removed, or if they are born without organs that produce sex hormones, they will not go through puberty on their own. A lack of sex hormones affects many bodily functions, particularly bone health. Intersex people without gonads who don’t receive adequate hormone replacement therapy may be at risk for osteopenia as early as their 20s.
11.2. The Risks of Unnecessary Surgeries
Many health problems experienced by intersex individuals are the direct result of unnecessary intersex surgeries. Surgery creates scar tissue, which can affect appearance, sexual function, and even fertility. Removing ovaries or testes prevents natural puberty and makes a person permanently dependent on external hormones. Infant clitoral surgeries have been shown to reduce sexual sensation. Surgeries to create a vagina or move a hypospadic urethra are similarly invasive and carry high complication rates.
Some infant intersex surgeries increase the lifelong risk of UTIs. Many people require multiple surgeries to find relief from issues caused by their first infant surgery. These decisions are best left up to the individual.
12. How Do I Know if I’m Intersex?
Could a person be intersex without knowing it? Without a medical diagnosis? It’s possible.
These are the most common ways for a person to realize their body is different:
- At birth, when another person notices 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, when learning that adults covered up childhood medical interventions
Most intersex people can identify recognizable patterns in their bodies and social experiences that hold up across different groups of intersex people and across medical terms for different intersex variations.
12.1. Shame and Medical Pressure
Most intersex people have experienced shame because their genitals or reproductive anatomy are different. Many, but not all, experience medical pressure to change their bodies, often starting with doctors offering parents surgeries or hormone treatments for their children.
Not all intersex people have genital differences, and not all have medical diagnoses or records. It’s important to remember that intersex people have existed long before 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 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.
13. Can Intersex People Have Children or Get Pregnant?
The short answer is maybe. Like any person, it depends on body parts and sometimes on 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, typically a uterus. There are many ways for all of that to happen, even for non-intersex people. It’s important to remember that no human can reproduce without another person, including with donation and medical technology.
13.1. Fertility and Intersex Variations
If an intersex person has a penis and testes that produce 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 varies for each intersex person. Many, but not all, intersex variations 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, and it’s important to allow intersex people to share at their own pace, if they choose.
14. 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, which hosts a yearly in-person conference in the United States.
14.1. Finding Support and Community
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.
15. 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’s essential to be open and honest about bodily differences with your child and family. The more support you can find, the better. Look for understanding providers. Ask to be connected to other families and 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.
16. What Should I Know About Surgery on My Child’s Clitoris, Vagina, Urethra, or Testicles?
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:
- Why at this age?
- What are the benefits?
- What are the risks?
- What happens if we wait and see?
Know Your Rights brochure for parents of intersex children
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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