Uncovering the reality of living with this chronic, and often misunderstood, condition
They say be careful what you wish for, and I can attest to the fact that having your wish granted can come with unexpected consequences. Following a myriad of health oddities that were just not adding up, my deepest desire was to understand what was happening, and get answers. Then, at the end of last year, I was diagnosed with polycystic ovary syndrome (PCOS).
The journey to receiving my diagnosis was fraught with challenges – from stereotypes and misinformation, to medical ignorance. And while finally finding out what I was dealing with brought some relief and treatment potential, the misconceptions surrounding PCOS and others’ lack of awareness and understanding, added to the burden. So, here I’m breaking down six myths around PCOS, to set the record straight about this often misrepresented condition.
Myth 1: PCOS just causes excess hair growth.
Some people think PCOS is merely surface level – a condition that causes excess hair growth in unwanted places, and that plucking, waxing, or shaving that will resolve the issue. What’s there to complain about?
This couldn’t be more wrong. PCOS is no minor ailment; it rules most of my life. It can come with fatigue, bloating, sickness, nausea, pain, and the risk of developing health conditions such as diabetes, alongside risks of infertility. It impacts your hormone levels, and can result in metabolic, sleep, skin, and hair issues. Trying to manage external symptoms, such as unwanted hair growth, merely addresses one surface concern, and doesn’t deal with the vast array of underlying health implications that seriously impact your life.
Myth 2: People with PCOS are lazy, or using it as an excuse.
Chronic conditions impact your daily life and routine; alongside the physical implications and symptoms to manage, you have the mental drain of always ‘being prepared’ and planning around it. For me, this can be ensuring I have essentials in my handbag, leaving the party early, and organising appointments around work. That element of constantly ‘managing’ my condition has an extra cost, physically, emotionally, and economically.
While PCOS is a chronic condition, the Equality Act 2010 doesn’t explicitly list it, however the impact that it has on a person’s life can still qualify them for protection under the law. It is certainly not something a person would use as an excuse.
This is definitely the case for me; my fatigue is hideous, which not only makes me feel awful, but also guilty when I don’t have the energy to do everything others can. With socialising, I can’t always join in, or enjoy it. My self-esteem is impacted by the hair loss, and even just staying awake can be a struggle. And the additional effort of planning, attending, and joining in, is often underestimated. I am not lazy – it takes a lot of work to make everything look seamless.
Myth 3: PCOS can be cured.
This misinformation can be particularly rife on social media, with influencers, often notably in sponsored ads, claiming that they completely healed their PCOS simply by eating better, or with the right supplement.
While there’s no doubt that diet and lifestyle changes can help to manage the condition, and reduce the impact of symptoms, there is no current ‘cure’ for PCOS. I myself have changed my diet, and it has been wonderful; I feel a lot better, and my lost hair seems partly to be restoring itself. But the symptoms are still there, underneath it all.
Myth 4: Misdiagnosis doesn’t happen.
According to the World Health Organization, while PCOS affects 8–13% of reproductive-age women worldwide, as many as 70% of women may be undiagnosed, while Verity PCOS UK reports that 95% encountered problems trying to access NHS support. Additionally, a 2017 study by the Perelman School of Medicine at the University of Pennsylvania reported it takes, on average, two years to diagnose, with a third of women seeing at least three different healthcare professionals. This is by no means a suggestion that doctors aren’t trying to support you, but simply to trust your own awareness of your body when you feel something is wrong.
I personally know the difficulty of getting an accurate diagnosis, and the anguish of feeling like you’re not being listened to. Initially, I endured an unpleasant ultrasound to be told I couldn’t possibly have PCOS, only to have this reversed by a different professional six months later. Part of the issue with PCOS is that symptoms can overlap with other conditions, but also there are four types – insulin-resistant, inflammatory, hidden-cause, and pull-induced PCOS – so things like the ultrasound aren’t guaranteed to pick it up when there’s so much nuance to it.
Myth 5: Those with PCOS are infertile and can’t get pregnant.
This is perhaps one of the most common misunderstandings of what it means to have PCOS, and perpetuating this false narrative can increase fear and anxiety for those who are newly diagnosed. But the good news is that while PCOS can affect fertility, many people with the condition can, and do, get pregnant.
PCOS causes hormonal imbalances, which, in turn, can disrupt ovulation as your body requires the right hormones to tell it to release an egg. Therefore, those with PCOS may struggle more than some to conceive naturally, or take longer to do so as ovulation is required for conception. However, there are numerous treatment options and medications which can support the body to ovulate, and to manage the condition more generally. Additionally, there are other options to support your fertility journey, such as intrauterine insemination (IUI), and in vitro fertilisation (IVF), along with other routes to grow your family, such as fostering, adoption, or surrogacy.
MYTH 6: PCOS only has physical effects.
While there are undoubtedly physical symptoms to contend with, one of the things I’ve struggled with is the psychological and emotional side. For me, PCOS means that there are raised levels of the traditionally labelled ‘male’ hormone testosterone in my bloodstream, resulting in facial hair growth around my jawline and mouth, as well as hair loss – I have maybe three quarters of the hair I had before. This, combined with not knowing what the future may or may not hold with regards to my child-bearing possibilities, weighs heavy on my mind.
I felt like a failure, trapped by a despair I’d never known. Yet this wasn’t talked about – I had to refer myself to an additional service for help, which resulted in a diagnosis of severe depression and anxiety. Society places so much pressure and expectations on women and their role in creating life, along with the stereotypes around femininity, that I was made me feel like a failure as a woman in their eyes. I sought holistic treatment privately to address my shattered sense of self – which did wonders for my mental health.
Women and their roles in society should not be defined by procreation or aesthetics. When you’re already coming to terms with a chronic condition, and how to manage it, the psychological effect cannot be ignored. In treating any illness, we must look holistically, and support people from all angles to ensure their overall wellbeing is cared for.
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