My PCOS Diagnosis Changed How I See My Body

Graziadaily

2 days ago

For thirty years of my life, it's felt like I don't know my body. It does things I can't control, that are often painful, with no warning signs. My body is not a car that flashes lights when petrol is low, or emits steam from its bonnet. It is a human thing – flesh, organs, hormones, skin and bones – that I do not fully understand.
Heavy, painful periods have stopped me in my tracks or pressed pause on my life again and again. I have hunched over on busy London streets, cramping to a state of disarray, feeling more like a bag of potatoes than a person. I've looked different from week to week, puffing up like rice some days, only to wake up faced with a version of myself I'm more familiar with. I've held my rock-hard, bloated stomach and watched it change shape like a moon eclipsing, depending on the time of day or month.
My body has often felt like something that was happening to me, rather than with me. A recent Polycystic Ovary Syndrome diagnosis showed me that, despite always feeling like I should understand more, this confusion isn't my 'fault'. It's actually reality. It's not that I'm mistreating myself or misunderstanding something. Science doesn't know why I have this condition either, or why anyone who has it does. As the NHS website reads: The exact cause of polycystic ovary syndrome (PCOS) is unknown. And that, strangely, has been liberating.
It's difficult to know exactly how many people have PCOS, with data varying and The World Health Organization estimating that up to 70% of women affected remain undiagnosed worldwide. But it's thought to be very common, affecting about 1 in every 10 women in the UK. If you do get to the diagnosis stage, things don't look much brighter: 2 in 5 people (39%) receive no treatment after their initial consultation, and 56% find more success in self-managing their symptoms than with GP-prescribed care.
Earlier this year, I became one of those statistics. After more than 15 years of questioning, half my life, I was casually told that my blood tests and other investigations pointed towards PCOS. For a long time, I'd assumed I had endometriosis. My symptoms aligned, and I knew something wasn't right, but I'd received no medical support and had self-diagnosed. While endometriosis hasn't been ruled out, a conclusive PCOS diagnosis came as a surprise. I don't even have two of the most 'well known' symptoms: excess androgen or polycystic ovaries.
What PCOS is, why people get it, and how it manifests are far harder to define than buzzy TikToks and search-friendly blogs would have you believe. Broadly, the NHS outlines the three main features as: irregular periods (when your ovaries don't regularly release eggs), excess androgen (higher levels of "male" hormones, which may cause things like facial or body hair), and polycystic ovaries (enlarged ovaries with many fluid-filled sacs, or follicles, around the eggs – though despite the name, you don't actually have cysts). You need to have at least two of these to be diagnosed. PCOS is also linked to increased risk of type 2 diabetes, high cholesterol, and long-term health issues, and is associated with hormonal imbalances, including high insulin.
I'm not a medical professional, but through personal research and speaking with many other women, I've learned how varied PCOS is, and how painfully limited our collective understanding of it remains. The lack of research, awareness and treatment is, many argue (myself included), a direct result of medical misogyny. Just look at endometriosis (a condition often grouped with PCOS despite being fundamentally different) – it's less studied than male balding.
It's only been a few months since I was diagnosed, and although I was hurried away by overstretched NHS staff with no follow-up or treatment plan, the experience hasn't been all bad. In fact, it's fundamentally changed how I feel about myself, and more specifically, how I feel about my body.
After leaving the consultant's office, I spent hours, then days, then weeks, researching. I already knew a fair bit about PCOS thanks to my job as a journalist focused on women's lives. But the more I read, the more I felt vindicated. Vindicated that my painful periods weren't 'normal'. But also, and this is harder to explain, vindicated in my appearance. That felt uncomfortable, even toxic at times. But it was also deeply validating.
At 22, I came off contraception and quickly gained two stone. In the eight years since, my weight has steadily increased, even as my lifestyle has stayed largely the same; if anything, I've focused more on health and wellbeing as I've gotten older. But as a journalist who happens to be a woman, and someone with a public social media presence, I've received countless comments about my body – from the mildly offensive to the downright abusive. Those messages got into my head, alongside body-shaming remarks from family and former friends.
Even though I've spent a long time in body-neutral and positive spaces, and therefore logically know that fatness isn't shameful and that health isn't something you can see, I still internalised the belief that I was somehow doing something wrong. My PCOS diagnosis shifted that. It gave me answers. From insulin resistance and the role of nutrition, to medication for heavy periods, and, more importantly, a renewed sense of self-empathy.
Weight and PCOS is a complex, contradictory topic. Weight gain is a common symptom of PCOS, but we're told one of the best ways to manage the condition is to lose weight. Weight gain happens quickly with PCOS; weight loss happens slowly, if at all. Still, you're encouraged to try. And it runs deeper. Many women in larger bodies are dismissed outright by medical professionals, with weight becoming the sole focus of their care. More than half have reported experiencing medical fatphobia, including inappropriate, unsolicited weight-related comments and being denied treatment. So, while weight gain is a symptom, it's also part of why so many women go undiagnosed in the first place.