PCOS (Polycystic ovary syndrome) is defined as a hormone disorder characterized by “complex interactions between the ovaries, androgens, other hormones, and insulin.” A significant feature is elevated androgens, or “male hormones.”
Following my PCOS diagnosis, I went in search of resources and community. But finding those things proved to be quite difficult for me, as someone who is at odds with a binary understanding of gender. While PCOS is linked to various health conditions—such as diabetes, high blood pressure, and cancer—these were not the things most resources focused on, nor were they discussed with me during my medical diagnosis.
The language and information I encountered were heavily gendered and cisnormative, often failing to consider the experience of anyone other than cis women. They not only operated on assumptions about the gender identity of those seeking out PCOS resources and community, but also presumed a desire to remain committed to a particular performance of that gender identity, staying neatly within the bounds of womanhood and what womanhood is permitted to look like.
I would soon come to understand that PCOS treatments were often simply gender-affirming care for cis women—measures taken to ensure that they could continue to “feel like women.” The resources I found offered remedies to help lower testosterone, reduce facial and body hair, increase chances of pregnancy, reduce body weight, and regulate or restore menstruation—all things tied to the traditional vision of womanhood, all things I had no interest in addressing. Even so, the more I read, the more I began to feel persuaded to regard my body’s hormonal architecture as a blight. It was always framed as invasive, unwanted, and ruinous. Not because of the associated health risks but because of its outward manifestations.
The hyperandrogenism and virilization associated with PCOS can cause great distress for many cis women, manifesting as a type of gender dysphoria. But these particular traits were not distressing for me, despite the expectation for them to be. I did not understand the presence of “male traits” as being antithetical to myself, my body, or my gender identity. Therefore, I began to consider what it might mean if I instead understood these PCOS attributes as catalysts for gender euphoria.
A gender-expansive lens
The phrase “women’s bodies” is often used to discuss the reproductive health of those assigned female. This language excludes nonbinary and trans individuals who can experience the same health issues as cis women, and conversations about PCOS conform to this pattern.
Nonbinary, trans, and otherwise genderqueer individuals are left behind or shut out of many PCOS communities and discussions because we are continually misgendered or are simply alienated by the gendered language that focuses only on “women.” This means that our experiences with the medical system can also be alienating and even violent.
“Being a Black, queer, nonbinary physician, I’m definitely aware of the language and attitudes surrounding my own identity in what is historically viewed as ‘women’s health,’” says Dr. Cannon, a practicing OB-GYN who is not using their first name for privacy. “When discussing any treatment options with patients, I think it’s important to first ask what their goals are.”
When viewed through a gender-expansive lens, the physiological characteristics of PCOS typically regarded as negative and distressing “male traits” can instead be understood as welcomed features for some. “Individuals with PCOS may desire the symptoms associated with this syndrome,” Cannon acknowledges. “There should be a physician and patient conversation discussing individualized risks versus benefits. Treatment plans should all be individualized.”
Cannon’s approach to PCOS treatment and care takes cisnormative understandings of gender out of the equation, a rare occurrence in gynecology. “In my experience and training, gender identity and expression are often overlooked in gynecology, with the assumption that patients are cis women. Therefore, physicians off the bat speak about symptoms that stray away from their idea of a femme cis woman as an ‘abnormal finding’ and try to ‘correct’ it,” they explain. “The majority of OB-GYNs I’ve worked with are willfully undereducated about trans and nonbinary individuals’ health concerns that differ from cis women’s concerns.”
Grace B. Freedom describes themselves as a “steward of Black Love and Care.” They see some features of PCOS aligning with their genderfluid identity, namely their hirsutism (facial and body hair) and amenorrhea (the absence of monthly menstruation). For them, these attributes “produce euphoria.”
Dominant understandings of these PCOS traits “only make room for my beard to be a pathology rather than an announcement of a new becoming, of my fluidities as biological imperative rather than a disruption of so-called biological imperatives,” says Freedom. “My beard and infertility are expressions of my joy in not conforming, and thus being liberated from the gendered expectations of legibility.”
PCOS traits allow some nonbinary, trans, and gender non-conforming people to buck against societal expectations of legible gender and an easy-to-read gender expression. There should be more space within PCOS communities to celebrate this embrace.
An intersex lens
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.”