What does it mean to be intersex?
People who are intersex have reproductive or sexual anatomy that doesn’t fit into an exclusively male or female (binary) sex classification. Intersex traits might be apparent when a person’s born, but they might not appear until later (during puberty or even adulthood). You may never notice their intersex traits externally and you might only find out about them after a surgery or imaging test.
In the past, being intersex was known as having a disorder of sex development (DSD), and you might see it referred to this way in some places. But being intersex isn’t a disorder, disease or condition. Being intersex doesn’t mean you need any special treatments or care. But some people who are intersex choose gender affirmation options if their gender doesn’t match the one they were assigned at birth.
Being intersex may affect your:
- Reproductive system.
- Gonads (ovaries or testicles).
How common is being intersex?
An estimated 1 in 100 Americans is intersex. Around 2% of people worldwide have intersex traits.
What causes being intersex?
Experts don’t know what causes being intersex. Some intersex traits can be genetically inherited (passed from one generation to the next in a family). Being intersex might occur due to:
- Changes to an androgen hormone receptor gene.
- Natural or synthetic hormone exposure occurring during embryo development.
- Missing or out-of-place sex-determining region Y gene (SRY).
- Other genetic conditions causing abnormal levels of hormones related to genital development.
What does being intersex mean in my body?
Being intersex can present in about 40 different ways. The most common intersex traits include:
- Combination of chromosomes: Everyone inherits sex-linked chromosomes from their parents. People who are male have XY chromosomes. People who are females have XX chromosomes. People who are intersex may have a mix of chromosomes, such as XXY. Or they may have some cells that are XY and some cells that are XX. Or they may have just one X chromosome (XO). Other combinations can occur too.
- Mixed genitals and sex organs: A person who is intersex may have ovarian and testicular tissue (ovotestes). For example, you may have genitals that are associated with being assigned male at birth (AMAB), like a penis. At the same time, you may have internal reproductive anatomy or hormone levels more closely associated with being assigned female at birth (AFAB), like estrogen.
What are sex, gender and gender identity?
Sex and gender are not the same. Key differences include:
- Sex refers to the male or female label healthcare providers assigned you at birth based on your genitals. This label goes on birth certificates. Chromosomes, hormone levels and reproductive anatomy play roles in determining sex.
- Gender is a social construct based on societal or cultural beliefs about how people should act based on their sex.
- Gender identity refers to how your feel inside, regardless of the binary male or female label you were assigned at birth. It can influence how you choose to present yourself through your appearance and behaviors.
What is the gender of people who are intersex?
People who are intersex have a range of gender identities, just like everyone else. Some people who are intersex consider their gender to be intersex. Others identify as female, male, nonbinary or a different gender.
Does being intersex affect my sexual orientation?
Being intersex doesn’t affect whether you’re straight, gay, lesbian, bisexual or asexual or have another sexual orientation. It’s also not the same as being transgender. A person who is transgender identifies with a gender that’s different than the sex they were assigned at birth. A person who is intersex may be transgender if their gender identity doesn’t match the sex they were assigned or raised as.
Is a person who is intersex a hermaphrodite?
No. Hermaphrodites don’t exist. That is an outdated term implying that a person is both fully male and fully female, which isn’t biologically possible. In fact, many people who are intersex consider that term derogatory and stigmatizing. Intersex and being intersex are the correct terms.
Do people who are intersex need surgery or treatment?
If you’re a person who is intersex, you don’t typically require any surgery (unless you choose it).
In the past, children who were intersex have been given surgery to make their genitals match the sex they were assigned at birth or to remove reproductive anatomy (like gonadal tissue) that doesn’t match their assigned sex. These intersex surgeries often take place before a child is 2 years old.
More recently, people who are intersex and advocates have spoken against intersex surgeries, calling them unnecessary. They want parents to let their children choose whether to get surgeries or treatments — and which ones — when they’re old enough to make that choice.
Many organizations, including the American Academy of Family Physicians, support intersex people in making decisions about their bodies. This means waiting until a person is old enough to give informed consent.
What are the risks of intersex surgery?
The risks of intersex surgery include:
- Decreased sexual function.
- Urinary incontinence.
- Urinary tract infections (UTIs).
Surgery may cause trauma if a person later identifies as a different gender than their surgically assigned sex. People in this position may experience anxiety, depression and gender dysphoria.
What health conditions are associated with being intersex?
Most people who are intersex are healthy. In rare cases, being intersex can be associated with:
- Bone problems like osteopenia (weak bones) and osteoporosis.
- Congenital adrenal hyperplasia or androgen insensitivity.
- Hypospadias (urethral opening, where urine leaves the body, is on the wrong side of the penis) or no urethral opening.
- Klinefelter syndrome (people who were AMAB have an extra X chromosome).
- Mayer-Rokitansky-Küster-Hauser syndrome (uterus and vagina don’t form as expected).
- Swyer syndrome (undeveloped sex glands).
How do I know if I’m a person who is intersex?
If you don’t have noticeable genital changes at birth, it’s possible not to know that you’re intersex. Later in life, you may experience:
- No onset of puberty (for people assigned AFAB or AMAB) or amenorrhea (no menstruation in someone was AFAB).
- Changes during puberty that don’t align with your assigned sex (such as a person who was AMAB developing breasts).
- Problems conceiving (infertility).
Does being intersex affect fertility?
If you’re a person who is intersex, your ability to conceive a child depends on your reproductive anatomy. Many people who are intersex can have families through assisted reproductive technology (ART). This may involve in vitro fertilization (IVF), using donated eggs, sperm or embryos, or having a gestational carrier (surrogate).
A note from Cleveland Clinic
Being intersex might cause you to have lots of questions, especially after learning about it for the first time. People who are intersex may be self-conscious about their appearance or struggle to fit in with peers. It can be helpful to connect with others who understand these challenges. Talk to your healthcare provider about support groups and other resources that can help you feel seen and heard.
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