It’s Hard to be Nonbinary and Have PCOS When Medical Language is Still so Gendered

Trigger warning – This article includes mentions of transphobia, disordered eating, bleeding, menstruation and mental health problems.

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I was diagnosed with polycystic ovarian syndrome (PCOS) after coming off the pill, which I’d been prescribed five years earlier to manage very heavy, painful and irregular periods. I would often skip months and then have a prolonged two-week period the next month. The bleeding was so bad I would leave the classroom at school, go to the toilet to pass out from the pain and then return to class. 

PCOS is underresearched and incurable. The symptoms are not just ‘absent or heavy bleeding’ and affect all areas of life with symptoms of high-stress levels, muscle ache and depression. 

Being on the pill improved my periods but I suddenly gained a lot of weight and my mental health was very bad. I experienced a kind of numbness on the pill that I have never felt since. I also had a voracious appetite, which concerned me at the time as someone with a history of disordered eating because I was terrified of gaining weight.

About a year before I decided to come off the pill, I started having thoughts about my gender and sexuality. I started watching RuPaul’s Drag Race and was confused about why I recognised myself in the drag queens. In a way, I think that’s how it felt to perform a femininity that wasn’t mine and identified the root of my disordered eating. 

I started questioning my connection to the word ‘woman’ but I didn’t have the language to articulate this yet. When people asked me if I thought I was a man, I could definitively say no, so my queer cis friends told me not to worry about it. 

The questions didn’t really go away, though. I tried to navigate what it meant to feel like neither a man nor a woman. I also realised that gender wasn’t important to me in the people I chose to date. 

While questioning my gender and sexuality, I began to feel strange about being on the pill. It felt similar to oestrogen taken by trans feminine people, which felt at odds with who I am. I wanted to see what it would be like without the pill. 

The diagnostic criteria for PCOS include excess body hair, weight gain and acne. Just from looking at me, considering my weight and the sudden cystic acne that appeared after coming off the pill, my doctor suggested I might have PCOS. 

An internal ultrasound confirmed my ovaries were “a bit polycystic” and I was diagnosed with PCOS. The treatment options offered were going back on the pill, which I absolutely did not want to do, having grown more uncomfortable with the prospect of a ‘feminising’ hormone, or the coil. For someone with medical phobia and sexual trauma, neither was an option. 

The treatment pathway for PCOS seems to be ‘take contraceptive until you want to get pregnant and then receive fertility treatment if required’. There are a lot of assumptions made about what a person with PCOS might desire. This also produces an over reliance on hormonal contraceptives as singular treatment options. 

I felt a bit hopeless. I had never wanted children, I realise now that my feelings of discomfort around carrying a child had always been rooted in my gender identity. It felt as though there were no treatment options for me. 

Periods are often talked about as ‘women’s health issues’ or are celebrated as proving the ‘female body’ it’s magic. I do not wish to tell people how to refer to their own bodies but this messaging is something I struggle with. 

When people make statements such as ‘women’s bodies are tied to the moon’ or ‘women have pain built in’, it can be extremely othering for those who do not celebrate having periods. I am not a moon goddess because my body bleeds, it doesn’t feel like magic to me. It feels like sh*t. 

Finding resources for non-binary people with PCOS is extremely difficult. Once, I came across this Clue article, which appears to incorrectly imply that PCOS could be considered an intersex condition and that makes sense of why people with PCOS are ‘confused’ about their gender. As someone who was trying to make sense of themself in a binary world, this was crushing. 

It was difficult to explain to the doctors why I didn’t want to go back on the pill when it was clearly effective in improving my periods. I didn’t feel comfortable coming out to the doctor as I feared how this would be received, especially as someone who exists outside of the binary and does not wish to take testosterone.

These symptoms have only become worse and I have begun to dread my periods. I hate what it means for me and my body and want to figure out a way to stop this from happening that doesn’t worsen my mental health or gender dysphoria. I feel extremely lost and not very well supported. 

Here are some tips on using more gender and size-inclusive language when talking about conditions like PCOS:

– It is not necessary to refer to trans and non-binary people with PCOS as ‘AFAB’, while some people might be comfortable using these terms to describe themselves, I and many others are not. Saying “A person with/ who has PCOS” is enough to indicate what the health problem is, without invalidating their gender.

– Please don’t tell people with PCOS they just need to lose weight, not only is the evidence spurious, this is extremely thoughtless and fatphobic. This is a condition that makes it easy to gain weight and difficult to lose it and weight should not be a determining factor in whether someone is healthy or not. 

-Please do not group together everyone who isn’t a man in phrases such as ‘women and femmes’ or ‘women and non-binary people’ in a way that suggests non-binary and trans people are just women-lite. You can use phrases such as ‘people who menstruate’ when you want to address a specific issue to do with periods/ovaries, etc. 

-In addition, please do not refer to menstruation and period issues as ‘women’s health’, as above, it is not only women who experience them and this can be extremely alienating. 

If you are making sense of your gender and/or sexuality and have PCOS, please know that your experience is real. You don’t have to prove your gender to anyone.

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