When my polycystic ovary syndrome diagnosis got here in 2018, I used to be nearing my thirties and feeling utterly insane. I’d stopped menstruating; I couldn’t drop extra pounds; my adult-onset pimples kept flaring up; and I used to be offended. While I used to be freely complaining to anyone who would listen concerning the pains of being a hormonal woman, the one thing I never spoke about was just how much I used to be purging. 

PCOS is a lifelong hormonal imbalance affecting between 10 and 15 percent of the population within 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’s now recognised as a multisystem disorder affecting metabolic, reproductive, cardiovascular, and psychological health as well. Symptoms can range from pimples, weight gain and infertility to excessive hair, depression, anxiety – and eating disorders. 

The primary time I remember not feeling comfortable in my skin I used to be 12 years old and struggling to lift a skirt over my newly developed, almost womanly, hips. I fell to the bottom and burst into tears. This was the early 00s. Fad eating regimen culture ran supreme and by the age of 16, I had just about tried all of them. After failing to achieve my unrealistic goal weight, it wasn’t long until restricting and purging became every day occurrences that may go on to last many years. It was also around this age I began to have absent periods while concurrently going through bouts of depression. 

In her book, The PCOS Mood Cure, psychologist Gretchen Kubacky, who specialises in treating women with PCOS, found that just about 100% 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 individuals with PCOS experience an eating disorder, in comparison with 4 percent of those without – Kubacky says anecdotally, her numbers have been confirmed by other experts over time. “I also take a look at the scope of behaviours, so some patients may not meet the total criteria for an eating disorder, but exhibit significant disordered eating symptoms that affect quality of life, well-being, and talent to live healthier overall,” she says.

“I used to be told that the one approach to cure PCOS was to drop extra pounds, but that PCOS made it almost unimaginable to accomplish that” – Fox Al Rajim

So what is happening? First we’d like to have a look at how medical professionals advise those with PCOS when diagnosed. Previously, obesity was considered to be one in every of the causes of PCOS which meant the burden of responsibility and treatment was often placed on the patient. Now it seems that weight-gain only aggravates the condition and contributes to the event of it in women who’re already genetically predisposed to PCOS. Despite this, the common first response from doctors continues to be to advise weight reduction as a treatment. 

This could be particularly hard for individuals with PCOS, nevertheless, as the bulk have insulin resistance, making the act of shedding a couple of kilos rather 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 within the depression and negative body image symptoms that always include PCOS and things begin to go very mistaken, with many individuals feeling the urge to drop extra pounds by whatever means obligatory. 

“I used to be told that the one approach to cure PCOS was to drop extra pounds, but that PCOS made it almost unimaginable to accomplish that,” says Fox Al Rajim, a design research lead at Samsung. Al Rajim was diagnosed 15 years ago, once they were 16, they usually describe the method as very cold and difficult: “The GP was male, and completely dismissive. What I took to heart was that my weight, brought on by my very 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 used to be devastated.” 

Told by their doctor that they were “too fat” to be placed on the contraceptive pill – the very first thing a medical skilled will do once they think PCOS could be concerned – Al Rajim was placed on Metformin as a substitute. “I reacted atrociously,” they are saying, referring to the negative effects which may include nausea, vomiting, diarrhoea and stomach pain. “I used to be not believed concerning the extent of its negative effects, and was told to proceed to remain on it to assist my PCOS – that it will pass and I used to be just over reacting. It just wasn’t price it for me to proceed so I ultimately stopped taking it, and stopped going to the doctors.”

On the time of my very own diagnosis, I used to be 27 years old, and nobody would have considered me chubby except myself. Yet, I used to be still told to eat healthy and cut out meat, wheat, sugar and dairy; a particularly restrictive eating regimen which I still try to stick to every day. I used to be also placed on the pill, nevertheless all it did was make me extremely emotional, gain weight – which I had politely screamed on the doctor is a giant trigger of mine – and pick up an addiction to laxatives. 

Even for individuals who do manage to drop extra pounds, it almost all the time comes back, which is normally when a diet-binge cycle and an eating disorder is born. 

This is just not unusual – many individuals find themselves choosing unhealthy approaches to losing the load they gain from PCOS, reminiscent of laxatives in addition to smoking and eating regimen pills. Even for individuals who do manage to drop extra pounds, it almost all the time comes back, which is normally when a diet-binge cycle and an eating disorder is born. 

Moving forward, there must be more information and a more understanding approach from the medical professionals, in order that when the following generation are diagnosed with PCOS – often young adolescent women who’re particularly vulnerable to the pressures of beauty ideals and our cultural obsession with slimness – the blame is just not placed on them and their weight.  

“I saw a TikTok video that talked about obesity and weight gain being a ‘symptom’ quite than a ‘cause’ of PCOS and it really transformed the best way I approached my body,” says Al Rajim. “Principally, I feel okay now, after a protracted time of not feeling okay. And sooner or later, I’d prefer to not feel pressured to feel anything about it in any respect.”   

My very own journey with PCOS has been a protracted, drawn-out one. Like Al Rajim, I used to be also prescribed Metformin and have gotten used to the side-effects because they permit me to manage my weight in a rather more effective way than simply restricting, purging and excessively exercising. Hormonally, I even 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 won’t have gotten to this place. I now know why I feel the best way I do: my reproductive organs, my hormones and my mental health have been working in tandem. While I won’t ever be cured of this disease, I understand all of it to be chemistry, not character. And there’s something freeing about finally understanding that.