Frequently Asked Questions

“Intersex” is an umbrella term to describe an array of variations to physical sex that may not be considered typically male or female. Those who are intersex have a difference to or mixture of sex characteristics, such as sex chromosomes, reproductive organs, external and internal genitalia, and/or hormones.  Intersex traits can be apparent at birth or may not become evident until puberty or later.

I have heard some people refer to themselves as having a DSD. What is this?

DSD (Differences of Sex Development): DSD is another that refers to conditions involving atypical development of chromosomal, gonadal, or anatomical sex. Some intersex individuals may identify with this term, while others may not.

There are a couple of different terms that may also be used to describe intersex variations, including but not limited to:

Intersex Conditions, VSC (variations in sex characteristics), and some more outdated terms such as hermaphrodite or hermaphroditism.

Terminology is also personal. Some individuals may feel uncomfortable using terms like “DSD,” viewing them as medicalizing, while others may find this term appropriate for describing their bodies. Similarly, people may have varying levels of comfort with other terms.

It is a likely estimate that at least 1% of the world’s population is intersex!

Estimating the overall occurrence of intersex variations is challenging. Diagnostic protocols can differ significantly not only between countries but also from one hospital to another. Intersex variations are often not recorded or accurately diagnosed, and in some cases, they may not be brought to physicians’ attention at all. Gathering accurate data is particularly difficult due to gaps in intersex care and the overall lack of research in this field.

It’s important to recognize that various cultural and personal factors may lead individuals to avoid seeking medical advice for their own or their child’s intersex variation or difference of sex development.
Certain estimates also include or exclude certain differences of sex development from their estimates, which can also produce variability in the estimates.

To understand intersex variations better, it is useful to define what sex characteristics are. To do this, we must first understand the different kinds of sex traits that everybody’s body has. Sex traits are biological traits that inform the way our bodies develop.

The types of primary sex traits include:

• Sex chromosomes (XX, XY, XXY, X0, forms of mosaicism, etc)
• Gonads/reproductive organs (Testes, ovaries, ovotestes, streak gonads)
• Internal genitalia/reproductive organs (Uterus, prostate, etc)
• External genitalia (Male, female, ambiguous, etc)
• Sex hormones (Predominantly produces estrogen? Testosterone? Neither? Notable amounts of both? Etc)
  

The sex traits typical of male sex include:

• 46, XY sex chromosomes
• Two testes
• Prostate, seminal vesicles, vas deferens, epididymis
• Typical male external genitalia
• Testes produce higher amounts of androgens like testosterone, the body can receive that testosterone, and male secondary sex traits develop during puberty. Because the testes and other endocrine organs do not produce/convert very much estrogen or progesterone, female secondary sex traits (like breasts) do not develop.

The sex traits typical of female sex include:

• 46, XX sex chromosomes
• Two ovaries
• Uterus, cervix, upper vagina, fallopian tubes
• Typical female external genitalia
• Ovaries produce higher amounts of estrogens and progesterone, the body develops female secondary sex traits during puberty. There is an absence of male secondary sex traits as neither the ovaries nor other endocrine organs produce very much androgens.

For more information on sex characteristics and intersex variations, see our List of Intersex Variations!

No, being intersex is not a choice. Intersex variations are differences in physical sex that occur during development in the womb. Whether these variations are recognized at birth or later in life, they still form in utero. People have no control over how their bodies develop—they cannot choose how they are born.

Intersex variations are incredibly diverse and can have many different origins. In most cases, the root cause lies in differences within the genome—chromosomes and genes, the building blocks of life. These differences can range from variations in sex chromosomes (e.g., 46,XX/47,XXY mosaicism) to a mutation to a gene that regulates the production of an enzyme or hormone (e.g., 5ARD). These genetic differences can be random or inherited from family. Additionally, a small number of intersex variations are caused by exposure to specific hormonal medications (such as DES or progestin) during pregnancy.

No matter the cause, it is important to understand that it is no one’s “fault” that a person is born intersex. Having an intersex child, or being intersex, is not something to be ashamed of.

For more information on intersex variations, please refer to our List of Intersex Variations page.

Yes, intersex people can have sex. “Sex” is also somewhat broadly defined, and intimate/sexual activities can look different for everybody, sex is not always penetrative intercourse.

There are so many different intersex variations, not every intersex person has the same genitalia, thus the way one intersex person might have sex will not be universal to all intersex people.

It’s important to recognize that questions like these can be personal, uncomfortable, or intrusive for people. Partners, family and friends should be mindful before asking questions, and approach the topic with care and respect.

The ability to conceive biological children depends on the intersex variation and anatomy of the individual in question. Some intersex people have testicle(s) or ovary(s) that are able to produce sperm or eggs respectively, and can conceive naturally. Certain intersex people may be incapable of producing gametes (sperm or eggs) and/or carrying a child. Others may require medical assistance if they wish to conceive a child.

Family building varies for everyone, and it doesn’t always involve having biological children. Adoption, fostering, surrogacy, and sperm donation are alternative ways to create a family that don’t necessarily require genetic material or the ability to carry a child from one or both parents.

When it comes to gender identity, each intersex person will have unique life experiences, personal identities, and different bodies. As a result, gender identity varies from person to person.

Many intersex individuals are cisgender, meaning they identify with the gender assigned to them at birth, or with the gender that aligns most closely with their body or life experiences, regardless of their assigned gender. Intersex people who are cisgender generally identify as cisgender men or women.

For some, their intersex variation has a stronger influence on their gender identity. Instead of identifying as male, female, or nonbinary, they may choose to describe their gender identity simply as intersex.

It’s also important to acknowledge that a minority of intersex individuals may identify as transgender and/or nonbinary.

Sexual identity or sexual orientation are terms that describe sexual and romantic attraction. The gender(s) someone is interested in dating, marrying, or being intimate with defines their sexual orientation. For example, a bisexual person is attracted to multiple genders.

Whereas “intersex” is a term that refers to differences of physical sexual development. An intersex person with a variation such as PMDS may have some typically male sex traits (such as testes) and a typically female sex trait (like a uterus).

Something else to note is that the terms “bisexual” and “intersex” are NOT interchangeable terms. Despite historically having been used synonymously in some contexts, presently, the terms are used to describe distinctly different things.

Being lesbian, gay, bisexual, or transgender is distinctly different from being intersex.

The terms lesbian, gay, and bisexual refer to sexual orientation and describe the gender(s) to whom a person is sexually and romantically attracted. Sexual orientation can be defined by the gender(s) someone is interested in dating, marrying, or having relationships with. For example, people who identify as gay or homosexual are attracted exclusively to those of the same gender.

“Transgender” refers to individuals whose assigned sex at birth does not align with their gender identity. Transgender people may feel most comfortable expressing themselves in ways that reflect their gender identity, rather than their assigned sex or birth gender.

In contrast, “intersex” describes naturally occurring variations in physical sex characteristics. People with intersex traits may have a mix of, or differences in, sex characteristics, including chromosomes, gonads, external and internal genitalia, and/or hormones. For instance, someone with Swyer syndrome may have 46,XY chromosomes but present with female external genitalia.

For example, individuals with 5ARD may be assigned female at birth due to their external genitalia appearing female. However, when they experience a typical male puberty, they may feel more comfortable living as a man and identify with a male gender identity. Typically, intersex individuals with such experiences do not consider themselves transgender, as their journey with their body and gender identity is distinctly different.

To connect with communities and view other resources, please refer to our Resources page!