Are Lesbians Really More At Risk of PCOS? Or, is Science Still Failing our LGBTQIA+ Community?
If you Google “lesbians and PCOS,” the first result is a study I very much wish could be wiped from the internet.
It’s a study, first published in 2004, that claims to have observed a higher prevalence of PCOS among lesbian women than straight women. It looked at 618 women who sought medical care for infertility in the UK between 2001 and 2003. The results, according to the paper, were that 80% of the lesbian women in the group had polycystic ovaries and 38% had PCOS. That’s compared to 32% of straight women with polycystic ovaries and 14% had PCOS.
The conclusion, in the published study’s summary, is that there “is a significantly higher prevalence of PCO and PCOS in lesbians compared with heterosexual women.”
Is PCOS really more common in lesbians?
Not all scientific papers are made equal, and this is no exception. Not only was this a small sample group and an observational study, but the women involved were already seeking fertility treatment. Lesbian couples already face a difficult road to having a child, so it stands to reason that they may also be more likely to visit a fertility clinic. Plus, subsequent research has not replicated a link between PCOS and lesbianism.
I know all that now, but the first time I saw this study, it was like a punch to the gut. I was freshly out as a young lesbian and had been living with PCOS and its associated symptoms since puberty. I had about as much of a grasp of the nuances of scientific research as the next layperson, so of course I drew the conclusion that my attraction to women was somehow tied to my PCOS diagnosis.
It was easy to jump there because it feeds directly into stereotypes about queer women – that we’re failed women. That some part of us is simply too masculine. That we’re confused about how to behave as proper ladies, or that something has led us astray.
I’m secure in my sexuality enough now to know how ridiculous those stereotypes are. Firstly, there are very happy masculine and butch lesbians who are no less a woman than anyone else. And there are also plenty of lesbians who, like me, are femme. Lesbians express their gender and sexuality in all kinds of ways, which is another reason that study pains me.
'Imagine trying to determine the presence of PCOS or hyperandrogenism in the full range of LGBT identities and expecting any kind of pattern'
Queerness and gender identity are represented with a rainbow for a reason. There isn't just lesbian and straight women in the world – there are women who are bisexual, pansexual, asexual, queer, or still trying to figure it out. And there are trans men, trans woman, nonbinary people, and a host of other gender identities. Imagine trying to determine the presence of PCOS or hyperandrogenism in the full range of LGBT identities and expecting any kind of pattern. The more you poke holes in that study, the more the idea of trying to make any sort of connection between queerness and hormones seems ridiculous.
A segment of society has always been obsessed with trying to find a “cause” of queerness. For some, it’s so they can find a so-called cure. For others, it’s to prove that queerness is innate and therefore shouldn’t be subject to discrimination. From any angle, I think the urge to determine a biological cause of queerness is a flawed endeavour. And, pointing to hormones, specifically, once again feeds into the idea that LGBT+ folks are failing at performing their sex assigned at birth.
'Throughout my life, doctors have put so much more emphasis on the aesthetic symptoms of my PCOS rather than how it can increase the likelihood of some types of cancer, or how missing too many periods can affect my bones.'
What I wish we talked about when it comes to queerness and PCOS is acceptance and actual help. On the acceptance side, I’ve always been perturbed that the messaging around PCOS is that it diminishes womanhood. That it’s surely a tragedy that a woman would have to live with “excess” or “male-pattern” hair, a higher body weight, or infertility. That she would not be able to conform to prescribed ideals for womanhood. If anything, the queer community has shown me that gender is not defined by any of these things. Some women have beards, some don’t have a uterus, and many people told they were a girl at birth don’t identify that way at all. That’s not to say that anyone needs to be happy about their own PCOS symptoms, but I do wish outward physical symptoms weren’t such a chief concern.
Throughout my life, doctors have put so much more emphasis on the aesthetic symptoms of my PCOS rather than how it can increase the likelihood of some types of cancer, or how missing too many periods can affect my bones. Mostly, it was all about my weight. Too often, doctors are quick to tell a person with PCOS to lose weight – without evidence-backed advice as to how to do it – rather than treat the present symptoms.The most common treatment is also hormonal birth control. As someone not at risk of pregnancy in my relationship, and after enduring years of depression from taking the pill, I’m no longer willing to do that.
It’s all a recipe for distrust and add to that, LGBT folks have long-standing reasons not to trust doctors. We are too often mistreated, misunderstood, or discriminated against in medical settings. A poll from Harvard Chan School, NPR, and the Robert Wood Johnson Foundation found that “Nearly a sixth of LGBTQ adults have experienced discrimination at the doctor’s office or in another health care setting, while a fifth say they have avoided seeking medical care out of fear of discrimination.” Another report found that nearly half of trans people have been mistreated by medical providers.
When you Google “lesbians and PCOS” I don’t want you to see that first study, because I want you to see information that might actually help you. I want to see research about the barriers to getting medical care for PCOS as a queer person. I want to see queer people sharing their stories about living with PCOS. I want to see a better treatment suggestion than losing weight and taking hormonal birth control.
Rather than finding an anxiety-inducing reason to question my sexuality, it should be easier to find help. Queer people don’t need an explanation for their queerness, they need care that acknowledges and respects their identities.
This blog post was written by Lauren Strapagiel.