Polycystic Ovary Syndrome Fuelled My Eating Disorder

Zoe Bennett, 28, was in intensive therapy for an eating disorder and sincerely trying to recover when some reservations began to arise about her weight gain. These reservations were not Zoe’s own. In fact they came from the professionals treating her, and almost in the form of an accusation.

"When I did start eating my weight just went on so quickly, it raised concerns," she tells me. "My psychologist thought I must be bingeing. I was like, 'I'm not! Stop making me feel worse! I'm eating my meal plan.' He just couldn't understand why the weight was going up so quickly."

It was only later, when Zoe was at a healthy weight, trying unsuccessfully to get pregnant and unable to understand why, that she would begin to understand the reason for her lifelong struggle with her weight. She went to see a nurse about her fertility troubles who quickly identified her symptoms around weight and fertility (among other things) as signs of polycystic ovary syndrome (PCOS). Zoe's inability to lose weight and her ability to rapidly gain weight – which had exacerbated her eating disorder – was, it turned out, a symptom of a condition she never knew she had.

The relief of a diagnosis was short-lived. Zoe’s weight was now a point of contestation between the medical professionals treating her eating disorder and mental health, and those aiding her fertility. With one side pushing against the advice of the other, Zoe was stuck in the middle – and it was taking a further toll on her mental health.

"There were the psychologists saying 'Don't diet – your body will work itself out, your metabolism will work out' and then on the other side are the nurses who diagnosed me with PCOS, saying 'Oh it might help if you lose weight'," she recalls. "But I can't lose weight because I've got the eating disorder, and you can't easily lose weight anyway if you've got PCOS. The only way you can lose weight is by doing what I've just done, which led to me developing an eating disorder in the first place."

"The shame of it all made me really down because I didn't know which professional to listen to. I got so frustrated and it just played on that anxiety of not knowing what I'm doing. Oh my god, I just felt so lost."

Polycystic ovary syndrome is a common lifelong gynaecological condition which is thought to affect 10-15% of the population in the UK, disproportionally affecting women from Black, Asian and minority ethnic (BAME) backgrounds. According to Verity, the UK’s only polycystic ovary syndrome charity, PCOS is one of the leading causes of fertility problems among women and if not properly managed can lead to further health problems later in life such as type 2 diabetes, insulin resistance, cardiovascular disease and endometrial cancer. 

The symptoms of PCOS affect different women and people with wombs in different ways: some have mild to no symptoms at all while others can have a wide range of severe symptoms. However, common symptoms include irregular periods or a complete lack of periods; irregular ovulation or no ovulation at all; reduced fertility – difficulty becoming pregnant; unwanted facial or body hair (hirsutism); oily skin, acne; thinning hair or hair loss from the scalp (alopecia); weight problems – being overweight, rapid weight gain, difficulty losing weight; and depression and mood changes.

In fact, several studies have shown that people with PCOS are about three times more likely than people without PCOS to experience depression and anxiety. People with PCOS are also much more likely to report symptoms of anxiety and depression and those symptoms are more likely to be severe. Research conducted in 2016 has also shown that PCOS could indeed be linked to eating disorders. But as with every condition we are talking about in our Uncharted Bodies series, the reasons for this are unclear because the condition is under-researched. 

Professor Wiebke Arlt is director of the Institute of Metabolism and Systems Research at the University of Birmingham where she leads the Dissecting Androgen excess and metabolic dysfunction – an Integrated SYstems approach to PolyCystic Ovary Syndrome (DAISY-PCOS) research project. When we speak, she points out that the combined impact that several PCOS symptoms (namely weight, excess hair and acne) can have on a person’s self-esteem is a key factor in the condition’s link to poor mental health and eating disorders. 

"Women with polycystic ovary syndrome often struggle with mental health, in particular with depression, and also with difficulties with self-image and body image," Professor Arlt tells R29. "So women with polycystic ovary syndrome struggle more often than other women with being overweight. And because a characteristic of PCOS is actually slight overproduction of male hormones, this often leads to increased male pattern body hair." This imbalance of hormone levels is also linked to fat distribution (centred on the stomach not the hips) and acne as well as fertility problems. "Understandably the women find this very distressing and that adds to having a poor self-image."

This was clearly echoed in Zoe’s experience. As well as the issues around weight, she had been negotiating increased body hair and acne since puberty. "I just thought I was gross. That sounds really ridiculous but with the body hair and the weight gain, I thought it was something I was doing wrong. So I turned all this hatred inwards." This manifested in significant social anxiety, too. "Going swimming, for example, I would be checking the backs of my legs for hair. I was anxious enough going swimming in the first place because of the eating disorder and body image – then added to that [was the fear that] I've missed a little patch of hair and it's really thick and dark and everyone's gonna laugh at me. It made my social anxiety awful."

It’s not just the so-called 'superficial' symptoms like excess hair growth that can have an impact. When Katherine Wise, 23, experienced intense pelvic pain, irregular periods and bloating in her lower abdomen, it was months before she received a diagnosis. These symptoms, as well as her journey to get a diagnosis and treatment, compounded in a way that she believes is directly linked to her anxiety and depression diagnosis in January of this year.

Katherine started registering symptoms and recognising there was a problem after she came off the progestogen-only contraceptive pill and had the coil fitted. When she kept spotting long after expected, she went to a sexual health clinic to bypass the delays in GP appointments. She was put forward for an ultrasound and waited four months for the results to come back, during which time her notes were lost and nothing was communicated. In the meantime she had to reckon with the pain and worry of not knowing what was going on in her body.

"I was very anxious about the pelvic pain, and the irregular bleeding, and just the delay," says Katherine. "The whole process of trying to get the diagnosis was very stressful and anxiety-inducing to the point where every time I went to the appointments, I was like, What are they going to say? Are they even going to be able to tell me anything? Am I gonna have to wait another five weeks for an appointment?"

During this time Katherine realised that her depression was at least in part tied to her cycle and was exacerbated by her irregular, infrequent periods. "Once I started to have a more regular cycle, I knew that some of my very worst days coincided with when I was due on my period." As Katherine notes, these symptoms – from the acne and hair to the irregular periods and pelvic pain – are exaggerated ones that you might get on the pill or with periods more generally. Consequently, PCOS is not often on people’s radar as the first port of call. "I don't think it's taken seriously. It certainly wasn't my first thought when I thought something was wrong. I thought it was a dislodged coil and possibly endometriosis because I've heard that that's a thing that can affect women in their mid 20s. But I hadn't heard of PCOS before then, and PCOS was not the first thing that doctors thought it might be: they thought it was bloating, they thought it was gas, they thought it was cramping."

"I really had to push for them to believe that something was wrong," she adds. 

Katherine and Zoe’s stories show that the mental health impact of PCOS is more complicated than 'just' the symptoms that manifest. The long, slow journey to diagnosis, the lack of research and viable treatment, and the lifelong nature of the condition can all have an impact on an already vulnerable patient. And treatment, as it stands, doesn’t take mental health into account at all.

Currently, the most common course of treatment is around lifestyle changes, with weight loss often touted as an easy fix. There is evidence that losing weight can help with the symptoms of PCOS but placing the burden on the patient affects how seriously the condition is taken by the health services: you’re just told to lose weight and come back. It’s a big 'if' that a PCOS patient can lose weight anyway: metabolic syndrome (a combination of diabetes, high blood pressure (hypertension) and obesity) affects 33% of people with PCOS, while the majority of PCOS patients have some form of insulin resistance. As Zoe’s experience shows, it should never be as simple as telling someone to just lose weight. Pushing a patient to do so can often have a hugely negative effect on them, whether they have a history of disordered eating or not.

The other treatment route is working your way through hormonal treatments (i.e. the contraceptive pill) to find the least detrimental solution. Still, there’s no guarantee that any of the medication will work for you: it’s trial and error, the course of which could well send you spiralling due to the various side effects of hormonal contraception itself. In Katherine’s journey to diagnosis, she took the morning after pill, Utovlan (the period delay pill) and the progestogen-only pill, all in the course of three months. She thinks this probably made her depression worse.

The contradicting advice emphasises how the disconnect between a patient's PCOS symptoms and mental ill health in the eyes of health professionals can and does exacerbate depression and anxiety for PCOS sufferers. 

To some experts in the field, the solution is obvious. Dr John Barry is a chartered psychologist working as a research co-ordinator at UCL's Institute for Women's Health and has recently written a book exploring the psychological impacts of PCOS. He believes that treatment must be integrated and emphasises that PCOS should be a consideration among mental health professionals. "From my point of view, it's very clear how PCOS is related to mental health issues but often when you're in the middle of a situation and you're experiencing all the stress and strains, it doesn't help you to think objectively about it and it's hard to figure out," he explains. "We definitely need us – health professionals – to be much more advanced than we are in terms of providing help and support for women with PCOS – psychologically and otherwise."

In particular, Dr Barry emphasises how PCOS is not at all on the radar of clinical psychology. He thinks that bringing it to the forefront (or at least drawing attention to it) could help psychologists treat their patients. "There're so many women [talking to their psychologist] who will be feeling anxious or depressed but not really sure why, and if they've got PCOS it really gives you a massive insight into why that might be." He stresses that PCOS is not necessarily a defining factor in every case: there are many who go through life with little to no symptoms, and there are always other factors at play with anxiety and depression. But, he adds: "If you do know about PCOS it just makes things miles easier, it opens a whole new checklist of stuff that you might want to take into account."

Importantly, this knowledge could shape the course of mental health treatment you get. "Rather than just, say, CBT or counselling, you might use something that's more relaxation-orientated because there's increasing research that relaxation-type therapy can actually help with quality of life for women that suffer from PCOS, but also it can help slightly lower some of the testosterone family of biochemicals and potentially they might even help with some of the other aspects of PCOS too." Research into these treatment routes is currently limited but promising.

Beyond specific psychological support, better dissemination of information between patients and practitioners and among practitioners themselves is fundamental to improving the treatment and mental wellbeing of PCOS patients. "As hospital-based hormone specialists, we need to crucially work with our GP colleagues," says Professor Arlt, "because the condition affects 10 to 15% of the population. All of these women could not be referred to hospital – we would never be able to catch up. What is important is to provide a joined up management plan, and to ensure that women with polycystic ovary syndrome have all the information they need when they are first diagnosed."

While PCOS is a lifelong condition with a range of long-term impacts, there is hope to be gleaned. Taking the clarity of her diagnosis, Katherine has used lockdown as an opportunity to reckon with her mental health and get to grips with her meds, which has helped immensely. Even seemingly insurmountable roadblocks can be overcome. After reaching a healthy weight and starting fertility treatment, Zoe and her husband are delighted to be pregnant with their first child.

The sooner PCOS is identified in a patient and the more the condition is understood, the better it is for everyone. There can be more research, more information and more support. Perhaps most impactfully, earlier intervention could preempt someone’s mental health getting worse and improve their quality of life.

"I've got quite broad shoulders and I was always called manly or masculine. I was bullied horrendously at school," says Zoe. "Then all of a sudden this body hair appeared on my face and my legs. It just added to all those body image issues and it just made me so down and embarrassed of my own body because I didn't know what it was, I just thought it was me. If I'd learned about the condition when I was younger it would have definitely helped with the body image side of things and the social anxiety as well. I could have understood and actually realised how common it is."

As it stands, women and people with wombs who suffer with PCOS have to go on their own journey through the internet to understand and get to grips with what the condition means for their life. But the more we talk about and normalise the symptoms, and the more we push for better psychological and medical support, we can find and create environments both online and offline where PCOS is not an automatic cause of anxiety, depression and shame.