September is PCOS awareness month. If you're like the vast majority of the population, you're probably wondering "what the hay is that?" PCOS, or polycystic ovary syndrome, is an endocrine disorder that affects women of childbearing age from all walks of life. It's unknown what causes it and there is no cure. Instead, the focus is on symptom management, of which there are many: weight gain and difficulty losing it, fatigue, insomnia, hair loss in places you want it and growth where you don't, irregular cycles, stubborn acne, infertility, a predisposition to diabetes and mental health struggles... the list goes on and on. There's no definitive test for PCOS; a diagnosis comes from meeting a two out of three assessment. 1 in 10 women will be diagnosed with this condition in their lifetime. Mothers and aunts, wives and daughters, friends and coworkers... statistically speaking, someone you know is suffering. I am the 1 in 10.
I was diagnosed with PCOS in 2023, although I suspected I had it for a brief window of time before that. I had spent my entire life up to that point wondering why everything seemed so much harder for me than other women. I did all the right things and gained weight, struggled to manage a whole host of embarrassing symptoms, and just generally felt like I was broken and would be for the rest of my life. One of the most difficult parts about conditions like this is the mental toll of a diagnosis that most people don't see. She's overweight because she's lazy, you might think, not realizing that the same weight loss advice given to "normal" people is often counterproductive for women with PCOS. Her skin and hair are like that because she doesn't take care of herself, another might add, not understanding that hormonal imbalances are turning these womens' bodies against them. In addition to trying to juggle the chronic effects of PCOS, which is difficult enough as it is, women are forced to contend with the often harsh judgement of those who don't understand what they're going through.
Incredibly, despite its prevalence, very little research has been or is being done on this disorder. Within the PCOS community, you'll find stories of countless women whose healthcare providers knew little to nothing about it or, even worse, brushed off their symptoms as imaginary. As a result, an astonishing 70% of women who do have PCOS are estimated to be undiagnosed. Considering there are over 4 billion women on the planet, that's a lot of people living with a condition they have no idea how to control. For those of us who are lucky enough to receive a diagnosis (and it's a shame we even have to qualify that as good luck), the typical recommendation is "come back when you want to get pregnant"; most receive no information about what's happening or what they should do about it. It's the typical "we'll put a band-aid on it when it becomes a problem" approach, which fails to take into account the lifelong symptoms - some of which can have potentially serious consequences - that come with it. Thanks to the magic of the Internet, there are pockets of women who have banded together to essentially crowdsource our treatment; learning what works and what doesn't and providing support and encouragement for those who are struggling.
I debated making this post, but ultimately I decided that raising more awareness of this topic - even at the expense of sharing something personal that no one outside of my immediate family knows - can only be a good thing. I've been very fortunate to recently find a doctor who understands PCOS and is willing to work with me to find long-term solutions, but prior to that, most of my information came from the little pocket communities I mentioned before or whatever I could glean from random websites, some of which were almost certainly not credible sources. Women with PCOS are different; we work harder to achieve less-than-average returns and, without the crucial knowledge of why we're different, even that can seem insurmountable. As more people begin to speak out about this (Daisy Ridley, Victoria Beckham, or Jillian Michaels, anyone?), we can only hope that it will help someone who is suffering in silence. Until then, remember what Robin Williams said: "Everyone you meet is fighting a battle you know nothing about. Be kind. Always."
Photo cred: UNC Fertility
