《The strong association of PCOS with cis womanhood, the defining of it as a disorder or syndrome, and its framing as a “women’s health issue” obscures the fact that PCOS is a natural hormonal variation, an endocrine difference that is illustrated through secondary sex characteristics.
During my initial search for resources and community, I also learned that PCOS, given its characterization as a hormonal variance, falls under the intersex umbrella. This intersex umbrella covers a wide range of “individuals born with a hormonal, chromosomal, gonadal or genital variation which is considered outside of the male and female norms,” and PCOS meets that definition.
This is not an attempt to sway every person who has PCOS to identify themselves as intersex—though it is an acknowledgment that we have the option and the right to do so if it rings true to us. Rather, this is to say that shifting my perspective on PCOS and viewing it through an intersex lens allowed me to better understand it as a natural human variation rather than an affliction causing my body to do the “wrong” thing.
“I believe that someone with PCOS has every right to use the term intersex for themselves if they want, but I also understand it if they don’t,” said writer and intersex advocate Amanda Saenz.
“As an advocate and an intersex person, I opt to use a definition of intersex that is open ended and expansive,” Saenz explains. “The experiences that a term like ‘intersex’ hopes to define include differences in hormonal production and hormone reception, and the phenotypic effects these differences have on the body. To me, this is inclusive of things like PCOS.”
Discussing PCOS in this way is often met with indignation and resistance. Our society has a hard time separating gender from sex. This has resulted in a widespread misunderstanding of intersex identity as equivalent to transgender identity. Many who vehemently resist the idea of PCOS being under the intersex umbrella do so because they categorically link “female” with “woman,” and therefore misinterpret any acceptance of intersex identity as a denial of womanhood. Moreover, the stigma around and marginalization of intersex communities prevents many people from feeling comfortable with embracing it.
“You can be intersex and cisgender, transgender, or nonbinary. The ‘opposite’ of intersex is endosex, not cisgender,” explained Eshe Kiama Zuri, founder of U.K. Mutual Aid. As a nonbinary intersex person, Zuri approaches these ideas with a clear understanding of how the bodies of intersex individuals as well as many people with PCOS interrupt binary thinking about both sex and gender.
“The resistance to PCOS falling under the intersex umbrella is due to a white supremacist society’s desperation to cling to binary genders, which we know [have been] used as a colonial tool of control,” they offer.
The same medical and surgical interventions that legislators seek to ban trans and nonbinary people from accessing—which would be gender-affirming, life-saving care for them—are often forced on intersex infants and children who are unable to consent. This is done in efforts to align intersex bodies with social expectations of female and male, man and woman; the same logic undergirds the societal and medical pressure to “feminize” the female-assigned bodies of PCOS patients.
PCOS is “shockingly common [and] the most frequently occurring hormone-related disorder.” However, according to Medical News Today, “up to 75% of [people] with PCOS do not receive a diagnosis for their condition.” If we were to understand and accept something like PCOS as intersex, considering how “shockingly common” it is, the dominant idea of binary sex, with intersex being thought of as nothing more than a fringe occurrence, would be shattered.
“PCOS is only one of many conditions that could fall under the intersex umbrella, and care for people with PCOS would be considerably better if it wasn’t for the forced gendering and resistance to providing actual support for people with PCOS, even if it challenges society’s ideas of gender,” says Zuri.
Combating myths built around the gender and sex binaries would create more space to understand PCOS traits as part of normal human variation, rather than inherent problems to be fixed, symptoms to be eradicated. As Zuri so beautifully put it, “When we start to accept that this is not a body behaving ‘wrong’ and it is just a body, we stop blaming and punishing people for how their bodies work and start challenging societal expectations.”》
Discussion ¬