Intersex 101: Here’s What You Should Know This Intersex Awareness Day

Emma Collins (she/they)

Disclaimer: I am not intersex. This is not an identity I hold. In addition, I am going to do my best to leave gender out of this article, as intersex, as well as the other sexes, are independent of gender. Therefore, I will be using biological language such as male and female, which specifically refer to sex, not gender. In addition, I will be using medical terminology regarding body parts, and you may not use these words to describe your body. That is so, so okay, but due to the limits of the English language, it is what I am stuck with today.

The intersex pride flag. Photo courtesy of Wikimedia.

Intersex: People who are born with some biological characteristics that are considered “female” and others that are considered “male” (Planned Parenthood). This could mean having certain organs, or having certain genitalia, having ambiguous genitalia, or having ambiguous organs (ie. having both testes and ovarian tissues). Intersex could mean having a vagina but having XY chromosomes, or having XXY chromosomes. Being intersex is a naturally occurring variation in humans, and is not considered a medical problem. It’s estimated that about 1% of folks born in the US are intersex. The conditions that cause children to be deemed as intersex can be broken down into 4 categories: XX, XY, true gonadal intersex, and complex or undetermined intersex. Most people are well aware that society is beginning to recognize the existence of many genders outside the traditional man-woman binary. However, people are not so keen on saying that there are more than two sexes. Intersex is a third sex.

XX Intersex: Refers to people born with female chromosomes and ovaries, but external genitalia that appears male. The labia fuse, and the clitoris enlarges to sometimes look like a penis. It is most commonly caused by a condition called congenital adrenal hyperplasia, or CAH. This condition is how I got involved and interested in the identity of intersex. My sister has one of the variants of CAH, and I am a carrier for this disease. This means that should I one day have biological children, my children have an increased chance of being born with it, thus increasing their likelihood of being intersex. CAH refers to inherited disorders of the adrenal glands. These make hormones like cortisol and aldosterone, which are super important for life. People with CAH lack an enzyme that is necessary to make these essential hormones. So, the body produces more and more androgen (a male sex hormone), which causes male characteristics to either start super early, such as super premature puberty in boys, or masculine characteristics to start in girls. Other causes of intersex can include taking testosterone during pregnancy, tumors that produce male hormones (such as ovarian tumors) and aromatase deficiency. Aromatase is an enzyme everyone has, and it converts male hormones to female hormones. Too much aromatase can lead to too much estrogen. Usually, people with an aromatase deficiency will start showing symptoms at puberty, so children who may have been raised as girls may start to take on more masculine characteristics (facial hair, taller, more muscular build, etc).

XY Intersex: Refers to someone who has male chromosomes, but has external genitals which are incompletely formed, ambiguous, or clearly female. Testes may be normal, malformed, or absent altogether. Causes of XY intersex have been linked to problems in testosterone formation (missing/being deficient in an enzyme in this formation process) which can be attributed to CAH; problems with testes formation, attributable to gonadal dysgenesis (Swyer Syndrome); inefficently using testosterone which is most commonly caused by 5-alpha-reductase deficiency as well as androgen insensitivity syndrome (AIS). These causes are extremely complicated, and how any of them exactly work, I don’t know. I tried to read a Wikipedia article on it, and as I am no longer pre-med, I have no idea what the article was saying.

True Gonadal Intersex: Probably what people think of as intersex. It means having both ovarian and testicular tissue. They may have an ovotestis, which is a gonad with both these tissues, or might have 1 ovary and 1 testis. The external genitals may be ambiguous, or they may appear to be female or male. No one has any idea of why this happens.

Complex/Undetermined Intersex Disorders of Sexual Development: These conditions are really, really common. This can be a 45XO (Turner Syndrome), in which the individual has only one X chromosome. Or, it could be 47XXY (Klinefelter Syndrome) or 47XXX (Triple X Syndrome). For the most part these disorders do not result in discrepancy between external organs and internal genitalia.

Intersex Representation in the Media: Really, there is so, so little representation. TV shows such as Friends have made jokes about intersexuality, such as joking about Rachel being a hermaphrodite (a term now considered a slur). Many TV shows have had minor, one episode intersex characters such as Grey’s Anatomy. And it is great that shows are talking about it. but like… that is one episode of the show’s 338. The only show I have seen with an intersex main character is the show “Faking It” on MTV from 2014-2016. “Faking It” is an extremely problematic show in which two girls pretend to be gay to gain popularity (ugh), and then turns out one of the girls is in fact a lesbian (she eventually realizes she feels attraction towards men and women). The character Lauren Cooper, played by Bailey De Young, is revealed to be intersex in season 2 of 3, and it shows her struggles being accepted, her struggles with this identity. Other characters, such as Raven, played by Amanda Saenz, were also intersex, and played by intersex actors as well. This is the ONLY show I have ever seen intersex representaiton, and this show is so very problematic in so may other ways for the LGBTQ+ community that it is often written off and pushed away, despite it being the only TV show to show an intersex character.

A Few Advocacy Groups:
InterACT mission statement: “InterACT uses innovative legal and other strategies, to advocate for the human rights of children born with intersex traits.”
CARES Foundation: Leads in the effort to improve the lives of the Congenital Adrenal Hyperplasia community and seeks to advance quality health care through support, advocacy, education and research.
Right to Life: Against certain healthcare interventions for the intersex community, such as treatment with hormones.

​Me!: I have been really interested in intersex issues due to my own genetic links and my prior pre-med life. I currently work on a research study regarding the standardization of care for intersex people. I can’t talk about what we are doing or anything, as it is still in the early stages and not yet published, but I thought I would share one tidbit from my interview with my PI. I am an LGBTQ+ and Sexuality Studies minor, and my PI asked me during my interview if I thought intersex people deserve to be lumped into the LGBTQ+ community, as this is biological and not something they chose. He is the kind of guy to take “hot takes” to see how others are thinking. I immediately fired back that other LGBTQ+ identifying folks did not choose this identity, it is just them, and that whether or not intersex people choose to embrace or reject the LGBTQ+ community is up to them. He said he was just taking a hot take to see what I thought, but it got me thinking that lots of other people are thinking these same things.

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