We asked transgender, gender non-conforming, and nonbinary people with polycystic ovary syndrome (PCOS) to share their stories and advice.
“Healthcare relating to ovaries and uteruses is so gendered”
I’ve had PCOS symptoms probably since about age 13. Mainly the irregular periods, but also my weight/skin/mood factor in a fair bit too. [My doctor] first noticed a "hormone imbalance" at age 17, but it didn't get labelled as PCOS until they redid a blood test when I was 19. So yeah, took a good half a decade or so for them to call a spade a spade!
I can't help but wonder if the excess of testosterone that they picked up over the years has had an impact on how very not-a-woman I feel from time to time. (For clarity, I'm AFAB but genderfluid, only really started coming out on a wider scale this year.) There's nothing I can specifically pinpoint, but it's one of those things I wonder about. This was compounded when I read an article that made the case for PCOS being considered an intersex condition—if by some metrics I fall outside the gender binary anyway, it validates my feelings of not being what my birth certificate says I am. I think the fluidity of my gender feelings often made me doubt whether I was really non-binary or not, so this perspective was hugely validating in a lot of ways.
I went on the [birth control] pill for a year and it literally made my mental health divebomb, so never again. I am currently taking Metformin to see if that has an impact. Mainly I am attempting to avoid any treatment that involves hormones because of the above experiences! [PCOS treatment] hasn’t interacted much with me gender-wise so far, as I was very much still quite closeted when I was on the pill, and I've only just started the new medication. To be confirmed!
I think as I've come more to terms with my [gender] identity, the way that healthcare relating to ovaries, uteruses, etc., is so gendered has begun to grate more and more. It's not a huge thing for me personally, but delinking that in the medical profession would be an improvement, and would make it more accessible for those it affects more than me.
For other trans, gender-nonconforming or non-binary folks who are experiencing PCOS symptoms: If, like me, you were raised to internalise typical ideas of women's attractiveness—which are ENTIRELY at odds with a lot of the symptoms PCOS brings on—don't feel bad for letting those symptoms make you feel miserable, even if objectively you know it shouldn't matter because you're not a woman! The world is a pretty toxic place, and you're allowed to process those feelings at your own time and pace. It doesn't make you any less trans or non-binary either.
—Maz, genderfluid (they/them), 26
“My body hair and the way my high T levels help me build muscle help me feel more confident in my body”
My PCOS symptoms started in the fall of 1998. I currently experience hirsutism, acne, weight gain, fatigue, pelvic pain and cramps, and morning sickness. I was diagnosed with PCOS in late 1999/early 2000, about a year after my symptoms began.
I was diagnosed with PCOS at 13 years old by my pediatrician. Nothing was explained to me more than, "If you take this birth control, you won't have such awful periods and maybe won't get morning sickness anymore." But there was no discussion of the hair growth, weight gain, or acne, and especially no mention of what I later learned was elevated testosterone levels. These days I am out as a trans masculine, non-binary person, and my "in the middle" body makes a whole lot more sense to me than it did as a teen with no information or language to describe my world. I am not taking HRT but my body hair and the way that my high T levels help me build muscle help me feel more confident in my body. At the same time, the intense cramps, sudden fatigue, and occasional morning sickness are still as confusing to me as ever.
I was prescribed hormonal birth control for about 15 years and the only time it was adjusted was when I started having blood clots in my legs. I am also bipolar and was not able to manage my mental health symptoms until I got off of the pill. Hormonal birth control may have helped ease some symptoms early on in puberty but it was at the expense of being able to sort through my natural mood swings. No medical doctor answered my questions about my mood and the pill and it was my own decision to stop treatment. I didn't come out as trans until after I stopped taking hormonal birth control so I have not yet discussed my PCOS as a trans person with a doctor.
I have not felt listened to at most doctors and I have not had any regular check ups in almost a decade because I have anxiety about coming out to a doctor. I just go to urgent care if I am concerned I might need a prescription and there I don't disclose anything about being trans or queer. I would change the responsibility of finding culturally competent health care from the patient to the providers themselves; they should have a way of disclosing their experience and competency so that I can know before calling or walking in that I will be treated with respect instead of having to do research or wait for months to get an appointment at a queer-focused medical facility.
As for advice, I actually often recommend the Clue app! Clue was a big part of being able to claim and understand this currently unavoidable part of my life. My period used to surprise and torment me. After tracking it for a few years with Clue I've learned a lot about menstruation and my own body, especially the parts that make me feel dysphoric. I feel like I am actively involved and somehow feel more in control. Thank you for a great app and for acknowledging that I exist.
—Esco, non-binary (they/them), New York City, 32
“I just thought something was wrong with me. I didn't even know what PCOS was.”
I’ve had PCOS symptoms ever since I first started menstruating. I had horrible pain every cycle. Large amounts of blood and irregular but frequent cycles. I got put on birth control almost immediately and forgot about it. Still, my cycle is painful. Still, I am obese and have unwanted hair.
I wasn't diagnosed for a very long time. Even though I was in pain, even though I was obese and hairy and horny all the time. Even though every woman in my family for the last three generations has grown a full beard and had to get a hysterectomy. Even with all that, my doctors never said anything so I let it slide for quite a few years. I just thought something was inherently wrong with me. I didn't even know what PCOS was.
For a long time, I felt wrong. In addition to PCOS, I have autism so I just thought I was born "incorrect" in some unknowable way. I didn't act like a girl. I didn't look like a girl. I didn't feel like a girl. But I didn't act, look, or feel like a boy, so I wasn't accepted by either group. It was only as an adult that I realized non-binary was even an option. That I had been the whole time and there was nothing wrong with it.
I'm taking hormonal birth control, which helps to manage some of my pain and bleeding. It also keeps my hair "manageable" (see: all over the place but less on my face). For now, this is okay.
I experienced a lot of doctors simply ignoring many of my outward symptoms. Because of this, I assumed that my body was "normal-ish," when in fact it was incredibly obvious I had an issue. So much anxiety and fear (and eating disorders and depression) could have been eased if in the beginning someone had said, "Hey, it looks like you might have PCOS or something similar." Instead, I just thought I was fat because I "must be lazy" and that other females must just shave more and exercise more or do something different.
In terms of advice for others going through this, I found a lot of help and acceptance reading online educational articles and comics like Oh Joy Sex Toy and now Clue. Never be afraid to educate yourself! Never resign yourself to pain. Thank you, Clue! Your app changed the way I thought about my body and helped push me to take control of my health.
—Serena, genderqueer (they/them), Florida, 21
“I get the feeling from doctors that this isn’t an important issue”
I’ve had PCOS symptoms for about eight years. I have excess facial hair and infrequent periods. I went to my GP a few years after noticing the hair on my face getting worse, and got diagnosed with PCOS.There was confusion in my early twenties where I thought a lot about if I was FTM. Currently I’m identifying as non-binary. To manage my symptoms, I was put on birth control but stopped after it seemed to thin my hair. Now I’m having electrolysis.
My experience with doctors has been…I get the feeling as though this isn’t an important issue. I would change that, as it impacts mental health as well as other aspects [of health].
—Anonymous, non binary (they/them)
“I often question if my gender identity/expression only changes because of my PCOS”
I’ve had PCOS symptoms since I was 19 (seven years ago). I first thought I didn’t menstruate anymore because of the stress—it started right around the time when I was writing my Abitur. I only visited the doctor because I didn’t menstruate anymore, nothing else. But since around 15/16 (years of age), I have experienced increased hair growth on my body.
I was told many times that my head hair seems to grow faster than usual, but I also had some coarse hairs growing on my chin and upper lip, around my areola and around and under my belly button. I was told by my first GYN that this was because of increased testosterone levels. He also attributed my “masculine behavior” to that. (To this day I still have no clue, what that‘s supposed to mean.)
I had also gained a lot of weight back then, so my GYN did some kind of insulin test, but that came back negative. In my twenties, another GYN told me, that the size of my clitoris is also a symptom of my PCOS, because apparently I have a very large one. I don’t remember ever having a smaller clit, so I guess, that also started when I was around the age of 15/16. I can’t be sure though.
I got a diagnosis when I was 19 and I stopped menstruating. I visited a GYN who showed me my ovaries, pointed out some small bubbles and said, “See, these are your eggs—that they are still there means you have PCOS.” He also told me, that there is no exact test to tell me if it is really PCOS, and that it can disappear as quickly as it started. Another GYN around that time pretty much only told me that I don’t have to worry about getting pregnant, I still could. That was absolutely strange to me, since I didn’t ask about that. I didn’t even think about that.
I think there is a connection [between my PCOS symptoms and my gender identity]. Of course I can’t be sure, I still feel I know way too little about this condition. Something I did notice is, I feel like my symptoms come in waves, and during the period when I experience more or stronger symptoms my gender expression changes to a more androgynous/masculine style. When I‘m taking hormones for example, I feel and dress way more feminine.
I did take progesterone after I was first diagnosed. I think I started menstruating again, and my gender expression changed to more feminine again. I went through a period where I tried many different contraceptive pills (different dosages), I didn‘t react well to any of them so eventually I settled with the Jaydess hormone coil [IUD]. I don’t think my PCOS has any impact on how I was advised, at least not that I noticed. I never disclosed to any of my GYNs/doctors my gender, mainly because I actually only noticed that I don’t ID as a woman about two months ago.
My experience [with the healthcare system] was not very good. As already indicated, I didn’t get a proper explanation of the condition or break down of the symptoms for a long time. I always disclose my PCOS to my doctors. I think it is not very good that my doctor told me that I still could get pregnant, but failed to tell me that I could experience anxiety attacks, etc. I often question if my gender identity/expression only changes because of my PCOS and if I would be “completely” female if I just took hormones. I can’t stop but think that this could have been prevented by just telling me more about the condition and available treatment.
—Xia, Genderfluid/non binary (she/they/he), Berlin, 26
You might be interested to read more experiences of PCOS diagnosis and management, information about PCOS and pregnancy, or the link between PCOS and insulin resistance. We’ve also previously shared stories of trans folks' experiences of endometriosis.
Tracking your period and other symptoms can help you understand your cycle and how it relates to your health. We wrote some tips for using Clue when you’re trans. If you’re looking for a healthcare provider, we wrote a guide to finding a trans-friendly OB/GYN, and what to expect at your appointment.
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