At 17 years old I was diagnosed with polycystic ovary syndrome. I ticked every box of the most common symptoms: irregular periods, excessive facial and body hair, weight gain, break outs. I remember the clipped and cold conversation with my GP like it was yesterday. “You have PCOS, that means you probably won’t be able to have children. You need to lose weight.”
I was scared, confused and angry. I had no idea what PCOS even was, I didn’t understand the effect it was having on my body and I didn’t know how to treat it. The only word I clung on to from the conversation was “weight”.
I had no idea how to process the information given to me (or lack thereof) – all I came away with was the idea that having PCOS was my fault. I had made myself this way. I had taken away my potential to be a mother. I had caused my periods to disappear, the excessive body hair, the break outs, the weight gain. It was all because of my weight, and for that I felt so ashamed.
A hormonal disorder driven by an imbalance of hormonal production, PCOS is characterised by irregular periods, infertility, excessive facial hair growth, acne and hair loss. “Typically, androgens, cortisol and insulin are overproduced and oestrogen, progesterone and melatonin are under produced” says hormone nutritionist Hannah Alderson.
It affects one in 10 women, which equates to more than 3 million people in the UK. But despite those numbers, and the fact this condition can have serious consequences for their fertility, physical and mental health, women have for years been fobbed off with inadequate support and advice.
This week, the actress Florence Pugh told how she was diagnosed with PCOS at the age of 27 – having assumed that her acne and hair growth were just “part of being a woman”. She decided to have her eggs frozen following the diagnosis.
The main advice remains to lose weight – and social media is full of questionable diets being promoted on social media – despite the fact we all know dieting rarely works. There is no solid evidence that losing weight improves PCOS symptoms. Instead, various studies have shown that this advice stigmatises patients and has led to higher rates of eating disorders among people with the condition.
A recent study shone a light on how little progress has been made. The review of evidence by Monash University confirmed that weight-loss advice stigmatises women with PCOS and becomes a barrier to them seeking treatment. Not only that, but the education of health professionals is “inadequate and impacts quality of care and health outcomes”.
I was told weight loss was the only cure to all my affliction, the one solution. It was a black cloud that had loomed over me ever since I had reckoned with my body; it seemed like an impossible mountain to climb.
I now know that the relationship between PCOS and weight is complex – a lot more complicated than I was led to believe 17 years ago, and a lot less simple to treat than medical professionals are still advising. Someone with PCOS is predisposed to gain weight, and as they do their symptoms can worsen. There is a bidirectional relationship between the two, and can become a vicious circle.
“There is no one cause for PCOS”, says Alderson. “Being in a larger body does not cause PCOS. What the research tells us is that it is thought to arise from genetic and environmental factors; with inflammation, elevated cortisol and insulin resistance at the driving seat alongside nutrient deficiencies, gut dysbiosis, an unstable circadian rhythm and exposure to endocrine disruptors”.
Undisputedly, weight loss from lifestyle management might improve some hormonal and metabolic symptoms of PCOS, but claiming it is exclusively the only treatment is not only medically unfounded, but as this new study shows, is also mentally taxing.
I have only known life in a bigger body, but that isn’t to say I haven’t made considerable efforts to make it smaller and lose weight. I have been trying almost all my adult life to lose weight. It is only now – in an attempt to confront my PCOS head on – that I am allowing myself to understand what a huge impact PCOS has had on that journey. Instead of simply berating myself for not losing weight when I have been eating less and moving more, I am listening to the science.
The science shows that it is more difficult to lose weight with PCOS – the hormonal imbalance in your body makes you predisposed to hold on to weight (particularly round your middle), and the aforementioned hormones make it difficult to lose the weight too. For me, and other people who struggle with this imbalance, it really isn’t a case of eating less and moving more.
As Alderson explains the hyper-fixation on weight loss and PCOS is troubling. “Losing weight with PCOS can feel like trying to run a marathon with your shoelaces tied up. Hundreds of women that I have worked with have been made to feel like a failure by the system that does not understand the complexities of this disorder. Furthermore, a very low calorie diet focused on deficit consisting of ultra-processed, high GI index foods could be extremely pro-inflammatory, which paired with high intensity workouts (that can drive androgen activity and cortisol levels in the body), actually work together to create a perfect storm for PCOS to manifest”.
The research brings into light the stigmatisation around weight that prohibits patients from seeking meaningful medical help. But shame surrounds so many of the additional symptoms of PCOS – all of which has a huge negative impact on self-worth and self-esteem.
While I have had years to process and unpick the words that doctor told me about my fertility (and I have done enough research to know PCOS is not a blanket no in becoming a mother), the idea that I was potentially failing at something that made me so inherently female at such a young age was deeply upsetting. And that really is the crux of the impact PCOS has had on me: it made me feel like my womanhood had been questioned, and that I would never reach the imposed beauty standards on what it means to feel feminine today.
It has only been over the course of the past year that I have even allowed myself to accept that struggling with PCOS isn’t entirely my fault. In doing so, I have worked on managing my symptoms in a healthier way for both my body and my brain instead of just hyper fixating on weight loss.
Exercise is a key factor in managing my body’s experience with PCOS – in the past 12 months where I have worked consistently at improving my physical fitness, my body has responded positively to movement. My periods have become more regular and I feel stronger mentally and physically.
Phoebe Georgiou, a wellness and body positivity coach, and founder of @soulbodyretreats, points out the kind of exercise you undertake can vastly impact your hormones when they are already imbalanced. “If you’re navigating life with PCOS, think of exercise as a support system. Start with strength training a couple of times a week, which can boost your metabolism and improve insulin sensitivity.
Sprinkle in some moderate cardio, like brisk walks or cycling, to keep your heart happy and stress in check. It’s important not to forget the power of gentle movement like yoga and pilates for reducing stress and balancing hormones. I would advise steering clear of too much high-intensity training that can lead to further insulin spikes.”
PCOS still has a hold on my day-to-day life, it still impacts my self worth, it is still lacking in sincere and supported medical investigation, people are still dismissed for their weight, patients are still shrouded in shame. While there has been some progress in those 17 years, there still remains a huge chasm that requires work – and that starts with looking beyond just the numbers on a scale, and treating each case with care.