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.
Ahead of PCOS Awareness Month, this September, we asked the Royal College of Obstetricians and Gynaecologists to tell us a bit more about the symptoms to look out for. Click through for what Professor Adam Balen, the chair of the British Fertility Society, told us...
Irregular Periods or None At All
As Professor Balen points out, symptoms of polycystic ovarian syndrome (PCOS) can vary from woman to woman. “These can include irregular periods or no periods at all,” he says.
“Irregular and unpredictable periods can be unpleasant and a nuisance, as well as suggesting irregular ovulation, it can increase the risk of abnormal endometrial thickening.”
That’s something potentially dangerous: if you have fewer than three periods a year, the lining of the womb – what is called the endometrium – can thicken, and this may lead to endometrial cancer in a small number of women, according to the information provided by the Royal College of Obstetricians and Gynecologists.
It is still important to point out that having PCOS does not necessarily mean being sterile, and that it is still possible to become pregnant even in the absence of periods. So, please, still seek contraception advice from your GP or a specialist doctor.
Reduced Fertility
It is very common for women with PCOS to only get diagnosed when they are planning to have children, as they start looking for medical advice after failing to conceive.
“Difficulty getting pregnant, because of irregular ovulation or failure to ovulate, is another symptom of PCOS,” Professor Balen explains. “If the menstrual cycle is irregular, it is necessary to take steps to make it regular in order to achieve monthly ovulation and hence a better chance of conception.”
He points out that there are a number of treatments available that are used to stimulate regular ovulation. Here is a link to the National Institute for Health and Care Excellence (NICE) guidelines regarding assessment and treatment of fertility problems.
Weight Gain
Many women with PCOS are overweight, whether they have experienced a sudden and rapid increase, or they are finding it especially hard to lose weight.
“Being overweight probably causes the worst problems for women with the polycystic ovary syndrome, as obesity aggravates imbalances of the hormones that control ovulation and affect the skin and hair growth,” says Professor Balen.
PCOS symptoms are related to abnormal levels of two hormones: insulin and testosterone. Insulin, specifically, controls the level of glucose – a type of sugar – in the blood. Higher levels of insulin are linked to weight gain, as well as irregular periods, fertility problems and even higher levels of testosterone.
Balen suggests that regular physical exercise is helpful, as it will increase the body’s metabolism and significantly improve the ability to lose weight, as well as benefit the patient’s long-term health.
“Many women with PCOS successfully manage their symptoms and long-term health risks without medical intervention. They do this by eating a healthy diet, exercising regularly and maintaining a healthy lifestyle,” he explains.
Hirsutism and Hair Loss
Because of an elevated level of testosterone – a hormone that is responsible for the development of male secondary sexual characteristics – women with PCOS may experience hirsutism, the abnormal growth of body and facial hair, as well as thinning hair.
“I’ll be sat in a meeting, doing this,” says Rachel Hawkes, nervously feeling her chin. “Trying to see if I got any new black hair coming through. Or if there is an ingrown hair, and a red bump and I’m trying to cover it from people. I know that if I haven’t plucked my hair that morning and my fiancé goes to touch my face, I move my head away so he can’t touch under here.”
“Symptoms [of PCOS] can include an increase in facial or body hair, loss of hair on your head,” explains the professor. “These problems may be confined to small areas of the body, but sometimes they are more prominent, especially in women with darker hair or skin."
Skin Problems
Together with hirsutism and hair loss, women with PCOS can show other distressing symptoms of the hormonal disorder, which is often the cause of psychological issues too, such as depression, anxiety and low self-esteem.
As Professor Balen mentions, having oily skin or suffering from acne may both represent another red flag.
PCOS-related acne can affect even adult women, and be found in different parts of the body, most commonly the face, the chest or the back. The symptom may still be linked to an excessive level of testosterone, Balen explains, and therapy should aim to reduce sebum production, bacteria and inflammation, he suggests.
If you think you may be experiencing the symptoms of PCOS, visit your GP.
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