When my polycystic ovary syndrome diagnosis came in 2018, I was nearing my thirties and feeling utterly insane. I’d stopped menstruating; I couldn’t lose weight; my adult-onset acne kept flaring up; and I was angry. While I was freely complaining to anyone who would listen about the pains of being a hormonal woman, the one thing I never spoke about was just how much I was purging.

PCOS is a lifelong hormonal imbalance affecting between 10 and 15 percent of the population in the UK. Doctors will commonly only diagnose PCOS after identifying two of three symptoms: irregular or absent periods, excess androgens (elevated testosterone levels) and multiple cysts on the ovaries. Originally thought to only be a gynecologic and dermatologic problem, it is now recognised as a multisystem disorder affecting metabolic, reproductive, cardiovascular, and psychological health as well. Symptoms can range from acne, weight gain and infertility to excessive hair, depression, anxiety – and eating disorders.

The first time I remember not feeling comfortable in my skin I was 12 years old and struggling to lift a skirt over my newly developed, almost womanly, hips. I fell to the ground and burst into tears. This was the early 00s. Fad diet culture ran supreme and by the age of 16, I had pretty much tried them all. After failing to reach my unrealistic goal weight, it wasn’t long until restricting and purging became daily occurrences that would go on to last decades. It was also around this age I started to have absent periods while simultaneously going through bouts of depression.

In her book, The PCOS Mood Cure, psychologist Gretchen Kubacky, who specialises in treating women with PCOS, found that nearly 100 percent of her patients demonstrated eating disorders or disordered eating. It’s a scary statistic and while official estimates are lower – one study found 21 percent of people with PCOS experience an eating disorder, compared to 4 percent of those without – Kubacky says anecdotally, her numbers have been confirmed by other experts over the years. “I also look at the scope of behaviours, so some patients may not meet the full criteria for an eating disorder, but exhibit significant disordered eating symptoms that affect quality of life, well-being, and ability to live healthier overall,” she says.

“I was told that the only way to cure PCOS was to lose weight,

but that PCOS made it almost impossible to do so”

Fox Al Rajim
So what is going on? First we need to look at how medical professionals advise those with PCOS when diagnosed. In the past, obesity was considered to be one of the causes of PCOS which meant the burden of responsibility and treatment was often placed on the patient. Now it appears that weight-gain only aggravates the condition and contributes to the development of it in women who are already genetically predisposed to PCOS. Despite this, the common first response from doctors is still to advise weight loss as a treatment.

This can be particularly hard for people with PCOS, however, as the majority have insulin resistance, making the act of shedding a few pounds much more difficult, and the condition often causes additional weight gain. PCOS has also been shown to interfere with appropriate appetite regulation, increasingly the likelihood of binge eating. Add in the depression and negative body image symptoms that often come with PCOS and things start to go very wrong, with many people feeling the urge to lose weight by whatever means necessary.

“I was told that the only way to cure PCOS was to lose weight, but that PCOS made it almost impossible to do so,” says Fox Al Rajim, a design research lead at Samsung. Al Rajim was diagnosed 15 years ago, when they were 16, and they describe the process as very cold and challenging: “The GP was male, and completely dismissive. What I took to heart was that my weight, caused by my own laziness and lack of willpower, had caused the PCOS, and now I couldn’t even ‘lose’ it to treat myself. I hated myself, I hated my body, I was devastated.”

Told by their doctor that they were “too fat” to be put on the contraceptive pill – the first thing a medical professional will do when they think PCOS might be concerned – Al Rajim was put on Metformin instead. “I reacted atrociously,” they say, referring to the side effects which can include nausea, vomiting, diarrhoea and stomach pain. “I was not believed about the extent of its side effects, and was told to continue to stay on it to help my PCOS – that it would pass and I was just over reacting. It just wasn’t worth it for me to continue so I eventually stopped taking it, and stopped going to the doctors.”

At the time of my own diagnosis, I was 27 years old, and no one would have considered me overweight except myself. Yet, I was still told to eat healthy and cut out meat, wheat, sugar and dairy; an extremely restrictive diet which I still try to adhere to daily. I was also put on the pill, however all it did was make me extremely emotional, gain weight – which I had politely screamed at the doctor is a big trigger of mine – and pick up an addiction to laxatives.

Even for those who do manage to lose weight, it almost always comes back,

which is usually when a diet-binge cycle and an eating disorder is born. 

This is not uncommon – many people find themselves opting for unhealthy approaches to losing the weight they gain from PCOS, such as laxatives as well as smoking and diet pills. Even for those who do manage to lose weight, it almost always comes back, which is usually when a diet-binge cycle and an eating disorder is born.

Moving forward, there needs to be more information and a more understanding approach from the medical professionals, so that when the next generation are diagnosed with PCOS – often young adolescent women who are particularly vulnerable to the pressures of beauty ideals and our cultural obsession with slimness – the blame is not put on them and their weight.

“I saw a TikTok video that talked about obesity and weight gain being a ‘symptom’ rather than a ‘cause’ of PCOS and it really transformed the way I approached my body,” says Al Rajim. “Basically, I feel okay now, after a long time of not feeling okay. And one day, I’d like to not feel pressured to feel anything about it at all.”

My own journey with PCOS has been a long, drawn-out one. Like Al Rajim, I was also prescribed Metformin and have gotten used to the side-effects because they allow me to control my weight in a much more effective way than simply restricting, purging and excessively exercising. Hormonally, I have never felt more sane. If it wasn’t for my mother, who was right there with me – doing the research, finding the specialists, booking the doctor’s appointments – I might not have gotten to this place. I now know why I feel the way I do: my reproductive organs, my hormones and my mental health have been working in tandem. While I will never be cured of this disease, I understand it all to be chemistry, not character. And there’s something freeing about finally understanding that.