No One Tells You How Hard PCOS Really Is
Disha shares her personal journey of dealing with it.
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Editor’s note: In this deeply personal piece, Disha Rawal takes us through her journey with PCOS—from frustrating doctor visits to finding her way forward. This isn’t a guide to managing PCOS (we’ve commissioned that article for the coming weeks). This is about what living with PCOS actually feels like, and why it’s so much harder than anyone tells you.
Disha works in Venture Capital, quizzes on weekends, and writes something once every six months. You can connect with her on @dishaarawal.
“You do have a PCOS face”
I had heard of many kinds of faces in medical settings, but I hadn’t heard of a PCOS face, and I definitely didn’t think I had one. A ‘PCOS face,’ as my nurse called mine, displays excess hair growth, male pattern hairline recession, and water retention.
Though I retreated in the shame of walking with a discernibly odd face, this discovery encouraged doctors to do a battery of tests. The results revealed I had Polycystic Ovarian Syndrome (PCOS), a disorder where changes in women’s ovaries throw off their hormone levels, and pre-diabetes, a condition of elevated insulin levels that can develop into diabetes.
A quick Google search told me that PCOS is the leading cause of infertility in the world. At 16, this did not bother me, but the hair loss, acne, and depression had already begun to affect my sanity. As I processed the shock, the doctor prescribed me birth control (lifelong) and a medicine for blood glucose (temporary). For me and many others, living with PCOS meant dealing with a range of frustrating symptoms—from stubborn weight gain and irregular periods to fertility challenges later in life.
I kept wondering—what exactly went wrong?
“It could be because of many things, but it can all be solved by losing weight,” the doctor said without looking up from the prescription. I explained I had been trying to lose weight, to no avail.
“Did you try exercising and calorie counting?”
“Yes, I have been doing both for a while.”
“Great! Try harder, and it should work.”
Unnatii Sharma shared a reel on November 24, playing a gynaecologist who suggested weight loss as a panacea for all her patients’ problems. This video raked in 2.8 Million views, with countless women sharing stories like mine—of leaving the doctor’s clinic more confused than when they entered.
Why PCOS Is So Complex to Treat
“PCOS is like the classic story of a number of blind men, each able to touch just one part, trying to describe what an elephant must look like.” — Jennifer Lynn Ellerman, 2012
Over the three years it took me to reverse PCOS, I often wondered—why is this so hard? If ~10% of Indian women of reproductive age suffer from this disease, why do we still know so little? In hindsight, I now understand a few reasons.
PCOS is a multi-dimensional disorder, characterized by a trifecta of hormonal, metabolic and psychological disturbances. The thread connecting causation to a specific bouquet of symptoms is very, very hard to trace. For many women, losing weight turns out to be the magic fix everyone talks about. But here’s the catch: achieving weight loss is anything but simple.
The usual ‘calories in, calories out’ equation has many more variables for a woman with PCOS. Our bodies fight against weight loss—hormones that control hunger and metabolism are completely out of whack. This means the usual fixes often backfire.
For example, many women find that intense exercise, which should help burn calories, instead stresses their bodies and throws hormones further off balance. And because many of us with PCOS also have insulin resistance, our bodies just can’t handle blood sugar properly, meaning consuming refined carbs—even in a calorie-restricted diet— worsens symptoms.
So which is the weight loss method that actually works? There is no universal answer, leaving patients stuck in cycles of painful trial and error.
This complexity is further compounded by how little research is dedicated to women’s health. In the UK, there is five times more research into erectile dysfunction, which affects 19% of men, than into premenstrual syndrome, which affects a much larger percentage of women. The lack of medical attention to PCOS pervades the offices of doctors who are often dismissive of women who come to them with symptoms.
Florence Pugh, who became a massive movie star with hits like Midsommar and Dune 2, spoke about a gynaecologist in London dismissing her PCOS diagnosis despite her symptoms. Many women remarked that if Pugh could get ‘gaslit’ by a gynaec, what chance do common people have?
This fear and avoidance of doctors has led many to turn to influencers—throwing further danger into the mix. Tallene Hacatoryan runs a popular page on Instagram called PCOS.weightloss with nearly 850K (!!) followers. This account was my introduction to dietary adjustments like cutting out gluten and lactose, which eventually helped me, despite my initial scepticism. Tallene now markets an app, various supplements, and a podcast through her account.
Is it ideal to learn what to eat and what not to eat from Instagram? Probably not.
Is it the most accessible option most women with PCOS have? Unfortunately yes.
Finally, perhaps the hardest part of living with PCOS is, in the words of many women, feeling less like a woman. In a world where femininity is traditionally tied to ‘smallness’, struggling to lose a few extra pounds radically changes how women view themselves.
This shame often leads to giving up on treatment altogether, beginning a vicious spiral of mental and physical distress which can take truly insidious forms. A recent Taiwanese study reported that the risk of suicide in women with PCOS is about 8.5x higher than those without. Overcoming the immense psychological burden of this disease is perhaps the most important, hard-won milestone of recovery for many.
My chequered journey
I started off dealing with PCOS the way most people do: aggressively cutting calories and exercising to lose weight. With a BMI of 30, I was officially obese, so the initial weight loss should have come easy—or so I thought.
Instead, my diet and exercise plan pushed my body into overwhelming fatigue. That is when I realised that I needed to write my own weight loss playbook. I pivoted to slow but consistent weight training, gradually incorporating cardio and finally starting to run a year later.
Two painful years later, I could not only lose 20% of my body weight but also learn to enjoy working out.
Retrospection smoothens the squiggly lines of progress. Because in reality, I had to adjust my regime dozens of times, learning from bitter experiences, before I began to see progress. Even then, I wanted to give up more often than not.
On the hard days, I relied on the support of my personal trainer, who acted as both a guide and an accountability partner. On the even harder days, Cognitive Behavioural Therapy, a mental health treatment that teaches you to rewire negative thought patterns, helped me separate the experience of PCOS from myself and view it from a compassionate distance.
This kind of support is, of course, not accessible or affordable for everyone. There is hope that as research efforts begin to focus on women’s reproductive health and at the same time, smart digital health products enable personalized and non-judgemental care, the treatment landscape will become less and less unwieldy and confusing for patients.
Till then, the many communities of ‘cysters’—that’s what we PCOS patients call each other—who share experiences, hacks and empathy will continue to be the first port of call for women like me.
