About ten years ago, after moving from Australia and planning to start a family with her partner in the UK, Rachel Hawkes was diagnosed with Polycystic Ovary Syndrome (PCOS), a very common condition that affects a woman’s periods, fertility and hormones, often causing weight gain, facial or body hair, acne and hair loss.
She had been reassured by doctors about her irregular periods since her teenage years, so when her diagnosis finally came in, it was the first time she was hearing about PCOS at all. “I felt very overwhelmed, just [the GP] telling me that I couldn't have kids easily, or maybe at all,” she says. “So, I went online and started researching.”
At 35, she has now been chairing the only British national charity dedicated to PCOS, Verity, for around ten years, helping other women accessing information and support, and raising awareness about a disorder that reportedly affects one in five women in the UK.
“Think of how many women you know in your life. Let’s say you know 30 women; six of them have PCOS. It’s kind of shocking that, on the scale that it is, we don’t know more about it, or the general public don’t know more about it,” she says.
At the moment, there is no cure for PCOS and its causes remain unknown, although it often runs in families. It's characterised by fluid-filled sacs (follicles) surrounding the eggs in your ovaries, according to the NHS. Treatments are symptom-based and mainly focused around maintaining a healthy lifestyle and improving the quality of life for those affected.
“Every symptom of PCOS really chips away at a woman’s identity and how she identifies as a woman,” Hawkes reveals. “It can make women hairy or overweight or have acne or lose their hair or unable to get pregnant. These are all things we associate with femininity and womanhood.”
And beyond its physical manifestations, the psychological and emotional impact on patients can be devastating.
“We’ve got people who write to us [at Verity] saying ‘I’ve not left the house in months because I’m too ashamed of how I look’,” she says. “One woman brought me to tears in her message, because she said her fiancé caught her trying to crack open a battery in the bathroom because she was gonna use the acid on her skin to remove the hair, because she’d rather have scarring than hair. When you’re driven to that extreme, it’s soul-destroying.”
As with many other health issues related to the female reproductive organs and body, there is still a lot of stigma surrounding PCOS. As Hawkes points out, weight gain, hair loss and periods are not often deemed as sexy topics to talk about.
In addition, the condition is wrongfully often discarded as not being a serious health issue. While things like acne might be seen as cosmetic, PCOS is not, Hawkes says, because the condition also puts women at risk of developing long-term health problems, including diabetes, high blood pressure, heart disease and cancer.