PCOS and Intersex: A Case for Solidarity Against The Binary
I’ve learned to view the shifting androgen hormones in my body as inherent resistance to binary gender understandings.
Content Warning: Descriptions of medical violence against folks who are intersex and/or have been diagnosed with PCOS
by Gillian Giles
When I was 12, the anticipation and excitement of preparing to experience my first period was all consuming. Cultural messaging taught me that the event would be a gender defining moment. I hoped starting my period would give me everything I was promised, including the affirmation of my femininity and my gendering.
When the time came however, instead of menstruating, I began spotting. In the following month I was met with pain and intense bleeding. Then for months nothing came at all. When my mom finally took me to my first gynecology appointment, I was diagnosed with Polycystic Ovarian Syndrome (PCOS). I don’t remember much of my PCOS diagnosis, but I do remember the disappointment.
Polycystic ovarian syndrome (PCOS) is common. When people are diagnosed it’s often described as occurring whenever someone assigned female at birth produces “higher-than-normal amounts of male hormones.” People with PCOS have more ovarian follicles than what is deemed “normal” which creates higher amounts of androgens ( aka the “male hormone”).
Despite its name some people with PCOS don’t produce ovarian cysts but rather an “excess” of ovarian follicles which are not inherently harmful. When a follicle doesn’t transform through ovulation to produce an egg or disintegrate as they do when menstruation begins it becomes a cyst. Instead of producing more estrogen and less androgen as people do during ovulation, the follicle grows into a cyst. These cysts are generally harmless (but sometimes painful) and go away within 1-3 months.
Due to this process many people with the condition experience struggles with infertility and the development of traits considered “male” secondary sex characteristics. For black people assigned female at birth, some of these characteristics such as body and facial hair growth can be increased. Many people with PCOS experience weight gain, weight fluctuations or are fat and have their PCOS linked to that. There is no cure for PCOS.
After my diagnosis, I was told I had an excess of a “male hormone” and likely would experience fertility issues. The absence of my period and shifting hormones made me more susceptible to self esteem issues and confusion. My internalized cultural understanding of biological gender characteristics did not perfectly affirm my understanding of my assigned gender at birth. As I grew older my sense of gender and gendering changed.
Now as a non-binary person, I’ve learned to view the shifting androgen hormones in my body as inherent resistance to binary gender understandings and as affirming of my own fluidity.
At the same time, I harbor a lot of fear and confusion due to drastic hormonal mood shifts, a lack of understanding of my body, stigma, and medical violence. Cis-sexism, the understanding that genitals and other biological characteristics correspond with sex and thus creates gender plagues medical communities. Underlying assumptions about my ability to fit into essentialist understandings of gender, fertility and fatphobia are often subtly shown in comments and treatment options.
That confusion is echoed in cultural and scientific settings. In sports, testosterone testing has long been used to define gender. Black women and women of color with high testosterone levels have been barred from competing in sports at a more consistent rate than white women.
New policies within the IAAF’s Eligibility Regulations for the Female Classification requirements openly promote hormonal discrimination against female athletes with higher than allotted levels of testosterone and limit their participation. Those who want to compete and are found to have hormone levels that are not within regulation are forced to take medically unnecessary hormonal drugs.
When Caster Semenya, a Black athlete who was barred from defending her 800m title by the International Association of Athletic Federations (IAAF) last year fought the ruling, news media continuously misgendered her by calling her a man and misreporting that she was transgender. Similar assertions and studies exist for people with PCOS as well with claims that PCOS plays a role in athletic recruitment and physical performance.
Others have even linked our bodies, ovaries and internal organs to transgender men, claiming we are more likely to transition. Although Caster Semenya has never openly commented on her medical history or claimed that she is intersex, the violence against her exists because medical science views her as deviant.
Despite the fact that science and medical knowledge are presented as fundamental and biological truths, medical knowledge is culturally constructed and socially informed. These culturally constructed “truths” promote gender inequality and false binaries. It is in these false binaries that people who are born with an intersex trait and/or whose bodies are constructed as the most deviant, are punished.
In Georgiann Davis’ book Contesting Intersex, which accounts the activism and experiences of intersex people, Davis credits violence against intersex people to medicalization and pathologization of intersex bodies (21). Davis writes:
“I was diagnosed with CAIS around the age of thirteen. I was experiencing abdominal pains, and my mother thought I would soon begin menstruating, a rite of passage for women in my family, as in many other families. However, my period never came. The abdominal pain went away, but my mother was concerned enough to seek medical advice… At the time, the doctors told me I had underdeveloped ovaries that had a very high risk of being cancerous and would need to be surgically removed before my eighteenth birthday. But the doctors were lying: The purported ovaries were actually undescended testes. Encouraged by medical providers, my parents went along with the lie, and when I was seventeen, I had surgery to remove the supposedly dangerous organs.” (4)
Unfortunately medical and social violence is not uncommon. Medical violence can include cosmetic genital surgeries, the surgical removal of reproductive tissues, and steroid or sex hormone treatments to “feminize” or “masculinize” intersex bodies. Until biologically based traits and conditions associated with gender and sex are understood as a spectrum of existence rather than simply a medical pathologization to be feared, stigma against intersex people will persist.
Instead of seeing a manifestation of diverse bodies and experiences, folks who are intersex and/or have PCOS are rigidly categorized. Both intersex identities and PCOS labels are spectrums with widely varying experiences. Under an expanded intersex spectrum that acknowledges the social constructs of gender and includes i people with PCOS and other biological variations, our preoccupation and reliance on who fits where dwindles drastically.
It’s necessary that we shift our understanding of the “biological sex” binary and expose how fragile our constructions of sex actually are. Considering all the criteria between physical appearance of our bodies, genitalia, chromosomes, and hormones, how many people actually fit within the lines of biological gender?
Even without an expanded understanding of intersex, these shared experiences alone are a call and case for greater intersex solidarity within PCOS Advocacy. With similar violences of social and medical constructions, there’s a path forward for greater advocacy. People with bodies on the PCOS spectrum, the Intersex spectrum and all hormonal biological variations deserve to have their bodies acknowledged as naturally human variants. While medical help and assistance may be necessary at times, the medicalized pathologization and stigma must end.
The biological sex binary isn’t real and the more we try and devote medical science towards it, people with PCOS and Intersex variants will suffer.
Gillian Giles is a queer writer from Chicago IL. Gillian’s writing centers Black Liberation, QTPOC identity and the study of oppressive structures, while maintaining an analytical vantage point of these things. Further writing by Gillian can be found on thebodyisnotanapology.com. Gillian can also be found on Twitter @giles_gillian or reached at firstname.lastname@example.org