One in ten of us are believed to suffer from it, it can affect everything from our fertility to our mental health, and celebrities including Keke Palmer, Victoria Beckham, Daisy Ridley and Emma Thompson have all spoken openly about its effect on their lives. Yet Polycystic Ovary Syndrome (PCOS) is still a mystery to many of us. Whether you’ve received a diagnosis yourself, or simply want to understand the symptoms better, here’s everything you need to know.
What is PCOS?
One of the things that makes understanding PCOS so difficult is the language surrounding it. Firstly, you can have the syndrome without having cysts on your ovaries. You can also have cysts on your ovaries without having the syndrome. And while we’re at it, they aren’t actually cysts at all.
“Despite the name, you do not actually have cysts if you have PCOS,” explains Dr Sohère Roked, a GP specialising in functional medicine and hormones. Instead, what we refer to as polycystic ovaries are “ovaries that have become enlarged, and contain many fluid-filled sacs (follicles) that surround the eggs”.
Being diagnosed with PCOS means experiencing two of three key criteria. “The three main features of PCOS are: irregular periods (which means your ovaries do not regularly release eggs); excess androgens (high levels of ‘male’ hormones in the body, which may cause physical signs such as excess facial or body hair); and polycystic ovaries,” explains Dr Roked. “An individual needs only to indicate two of the three for diagnosis.”
Blood tests can be useful in determining hormone levels, and scans can indicate whether polycystic ovaries themselves are present, but a diagnosis of PCOS can also be made according to the clinical symptoms. “This is really important when trying to get a diagnosis,” says dietician Jodie Relf, who specialises in PCOS and acts as a spokesperson for MyOva – a supplements brand designed to raise awareness of and support women with PCOS. “I often see patients who have the clinical symptoms, but their blood tests come back ‘normal’. This is because the reference ranges used to compare blood test results are so broad and include samples from a wide group of different ages.”
What are some of the symptoms that people with PCOS experience?
As well as irregular menstrual cycles and excess facial or body hair, there are a number of other symptoms that commonly show up in people experiencing PCOS. Among them are abdominal obesity, fatigue, difficulty sleeping, headaches, acne – specifically around the jaw – and mental health difficulties such as depression and anxiety. However, PCOS doesn’t look the same for everyone.
"PCOS is a syndrome, which means that it is made up of a collection of different symptoms. It’s important to remember that these symptoms show up differently for everyone, which is why PCOS requires a personalised approach to be managed effectively,” says Relf. “Yes, some with PCOS will struggle with their weight and ‘abdominal obesity’, however a large percentage of those with PCOS are in smaller bodies and don’t have issues with their weight. Unfortunately, when we go to the GP to flag irregularities in menstrual cycles, we are often not taken seriously.”
She recommends keeping a track of your menstrual cycle and other symptoms you are experiencing, and taking this with you to the GP. There’s also the option of using the private healthcare system to seek a diagnosis, whilst companies like Hertility Health offer blood tests specifically for PCOS.
What is the impact of PCOS upon fertility?
For many people, the point at which they learn about PCOS – or the possibility they might have it – is when they experience infertility. Since PCOS is associated with an imbalance of different hormones – many of which are involved in the development of a mature egg, and maintaining a healthy pregnancy – those with the syndrome can struggle to conceive. The NHS states that there’s some evidence to suggest it may also be linked to an increased risk of miscarriage. However, others with PCOS have no difficulty conceiving at all, so those receiving a diagnosis shouldn’t automatically assume that they’ll experience issues.
But for those that do? “It is possible to reverse things in some patients with interventions, and lots of women can go on to conceive. Many patients tell me this is a major concern,” says Dr Roked. “I think it’s great when women come in before they want to conceive, to manage the PCOS so that it gives their body time to heal before trying to conceive.”
Leila Martyn is the founder of supplement brand MyOva. The idea for her business was born at the peak of a difficult fertility journey which spanned five years. “I found myself at a breaking point following the loss of my fourth baby. Despite exhaustive testing by the hospital following my most recent loss, no abnormalities were found. I was left feeling helpless and frustrated with the explanation that my baby losses were simply a matter of ‘bad luck’, and that I should simply just continue trying,” she explains. “I started researching the link between PCOS and egg quality, and found myo-inositol, a natural food supplement that showed promising results in studies to help women like me.”
It was a game-changing discovery. Martyn went on to have two sons, and to create MyOva, which now offers five myo-inositol supplements, including a preconception formula which aims to balance, repair and prepare your body for pregnancy. “I quickly realised that if I hadn’t heard of this supplement, there must be thousands of other women who hadn’t either,” she says.
Depending upon the specific issue causing the infertility, there are also conventional fertility treatments and medications that can help those with PCOS to become pregnant. A medicine called clomifene is often prescribed to those with PCOS to encourage ovulation, whilst type 2 diabetes drug Metformin and breast cancer drug Letrozole can also both be prescribed “off-label” for PCOS-related infertility.
Can PCOS itself be treated?
For Dr Roked, a personalised approach is crucial to understanding and treating a patient’s PCOS. “I think because there are multiple causes, it can take a while to figure out what is going to work for the particular individual,” she explains. “In functional medicine we try and look for the root cause. If this is identified, PCOS can be treated and even reversed, but it can take time to get to the bottom of it.”
Many people with PCOS are simply told to lose weight in order to reduce symptoms, but Relf says a more nuanced approach is needed.
“If those in smaller bodies are struggling with PCOS symptoms then ‘excess’ weight is not a true contributor to the symptoms. I cannot tell you how many women with PCOS have come to me struggling with their symptoms despite having lost weight,” she says. “This is often because they have had to adopt extreme measures such as excessive exercising or calorie restriction – these are an additional stress on the body which contribute towards inflammation and can further disrupt hormone imbalances. Everyone with PCOS, whatever their weight, should instead focus on balancing their hormones.”
Relf says that, for many people, improving insulin sensitivity can yield great results. She recommends using an inositol supplement to help the body respond to glucose more efficiently, and exercising regularly: “This doesn’t have to be hours of HIIT – any form of resistance exercise, including things such as Pilates and yoga, have been shown to improve glucose uptake by the cells, therefore improving insulin sensitivity.”
Diet changes can be helpful too. Relf recommends choosing good quality wholemeal and brown carbohydrates, since they take longer for the body to break down, resulting in a slower release of glucose. “And pair your carbs with protein – adding protein to a meal slows down digestion. This not only reduces the glucose spike, it also helps keep us fuller for longer,” she adds. She recommends plenty of antioxidant-rich fruits and vegetables too, and healthy fats including nuts, seeds and oily fish to bring down inflammation. “Also, focus on sleep and stress – both of these can contribute to how we respond to glucose, and the types of foods we choose to eat.”
Why is PCOS so poorly understood, and how can we change that?
One key issue Martyn raises is the lack of funding and GP training around PCOS and general women’s health, which means many women go without a diagnosis for years. She points to the government’s 2022 Women’s Health Strategy for England, in which 84 per cent of respondents stated that they didn’t feel listened to by their GP – particularly when it came to unseen pain such as gynaecological pain.
“These results show that we have a long way to go before there is some equality in the way women are treated, diagnosed, and referred by the healthcare system,” Martyn says. “I strongly believe as women we know our bodies better than anyone, and that’s why we need better education around PCOS – so women have the confidence to advocate for themselves and push their GP for a referral, and hopefully a faster diagnosis.”
One positive step towards this was when menstrual health was finally made a compulsory part of the school curriculum for children of all genders in 2020. But, says Martyn, it’s about changing attitudes, too. “By de-stigmatising PCOS and promoting greater understanding and empathy, we can challenge harmful stereotypes and misconceptions, and really make a difference for those affected by this condition.”
