What Is Intersex? Here’s What the Term Means and How It Can Present

If you've noticed the I in LGBTQIA+, you may wonder what it means and where it came from. The I stands for intersex, a biological variance that means a person's sex doesn't fit neatly into the boxes of "male" or "female"—based on their chromosomes, genital presentation, reproductive tissue, or some combination of the three.

Learn more about what it means to be intersex and why more intersex individuals are embracing this identity.

What Does Intersex Mean?

Intersex is when a person is born with a body that doesn't fit into the definition of typical male or female genitalia—the external genitalia doesn't match the internal genitalia.

Intersex used to be known as hermaphroditism, but the latter term is outdated and no longer used. Instead, intersex conditions are referred to as disorders of sex development (DSDs). There are four categories of intersex:

• 46, XX intersex
• 46, XY intersex
• True gonadal intersex
• Complex or undetermined intersex

Categories of Intersex

Typically females carry two X chromosomes, and males carry one X and one Y chromosome. With people who are intersex, this isn't necessarily true.

46, XX Intersex

In general, an individual who is intersex may have female chromosomes but ambiguous or male-appearing genitals. This is called 46, XX intersex which can be caused by:

• Male hormones taken during pregnancy
• Male hormone-producing tumors in the pregnant person
• Aromatase (an enzyme that converts male hormones to female hormones) deficiency

46, XY Intersex

Alternatively, the individual may have male chromosomes but ambiguous or female-appearing genitals. This is called 46, XY intersex which can be caused by:

• Problems with the testes
• Problems with testosterone formation
• Problems using testosterone
• Androgen insensitivity syndrome (when the receptors to male hormones don't function properly)
  

True Gonadal Intersex

A person who is intersex could have what's called true gonadal intersex, having both ovarian and testicular tissue. The cause for true gonadal intersex is unknown although there has been research done in animals that links true gonadal intersex to exposure of common agricultural pesticides.

Complex Intersex

The last category of intersex is a complex or undetermined disorder of sex development that doesn't fit neatly into any of these categories. This involves chromosome configurations other than 46, XX or 46, XY that results in sex development disorders.

Symptoms of Intersex

Being intersex is not about gender identity or sexual orientation; it's about physical sex traits and genes. Depending on the cause, symptoms related to being intersex could include:

• Having external genitalia that isn't clearly male or female at birth
• A smaller-than-expected penis
• A larger-than-expected clitoris
• Hypospadias (where the penile opening is not at the tip or the urethra is not separated from the vagina)
• Masses in the labia or groin
  
• Abnormalities with electrolyte levels
• Delayed or absent puberty
• Unexpected puberty changes

While intersex is typically discovered at birth, it is possible that it may not be diagnosed until puberty. Georgieann Davis, PhD, an associate professor of sociology at the University of New Mexico and author of "Contesting Intersex: The Dubious Diagnosis," was born with complete androgen insensitivity syndrome, which results in female-associated external genitalia but XY chromosomes and undescended testes.

"My parents, in my case and many others, didn't know I was intersex until I was in my teenage years and I didn't menstruate," Davis told Health. "That's when they discovered what they didn't expect to find inside."

Gender Assignment Surgery

In the past, if a baby was born with intersex traits, healthcare providers and caregivers may have chosen a sex assignment for the child and may have elected for surgery so the child has a penis or vagina. Caregivers were often urged to make a quick decision and to have surgery as soon as possible.

"If something is framed as a medical problem or emergency, parents are likely to move forward with medical intervention because that's the option they're presented," said Davis. "Parents may later express decisional regret because they didn't have the information presented to them, that [intersex] is a natural variation of one's body that does not have to dictate one's gender identity."

Effects of Gender Assignment Surgery at a Young Age

While healthcare providers and caregivers still often choose gender assignment surgery for children who are intersex, this issue is not without contention.

Since intersex children are unable to make the decision for themselves, their caregivers choose to make that decision for them. This may result in decreased sexual function and increased substance use disorders and suicide.

More and more, caregivers forgo surgery and let the child decide at a mature age if surgery or treatment is desired. The ISNA advocates this shift—the organization recommends caregivers wait on genital surgery until a child is mature enough to make an informed decision for themself.

Before making a surgical decision, the ISNA also recommends that the child should be fully informed and introduced to people who have and have not had the surgery.

How To Provide Support

If you want to provide support for someone who is intersex, the best thing is to advocate for people to have the ability to make their own choices about their bodies, rather than a caregiver or someone else.

Social Support

Davis suggested that caregivers of intersex children reach out to other caregivers of intersex kids. Then, they can rely on other caregivers' experience and support so their children can make informed decisions about their bodies.

"I haven't met an intersex person or activist who's been against surgery," said Davis. "We're against having these surgeries done on those who don't have a say in what's done to their bodies."

Psychosocial Support

Davis also emphasized the roles of psychosocial support in the form of psychiatric counseling as well as support groups to help individuals who are intersex navigate any challenges. According to a study, 53.6% of the participants who were intersex self-reported that their mental health was fair or poor. On top of that, many of the participants noted that they were experiencing:

• Depression
• Anxiety
• Post-traumatic stress disorder (PTSD)

"We, as advocates, would like to see the psychosocial part of care be the predominant thing," said Davis. "While surgeons and endocrinologists are key, psychological counseling is of utmost importance in handling our unique identities and traits in day-to-day life. There's no proof that growing up with a body that looks different is inherently harmful."

A Quick Review

Intersex is a complex condition rooted in genetics. If a person chooses to pursue treatment for the condition, it should be on their own terms. Finally, being an ally to intersex individuals means ensuring that those individuals feel they have a sense of agency and autonomy.