I was diagnosed with PCOS – and was soon drowning in misinformation

The Guardian

4 hours ago

I suspected I had polycystic ovary syndrome (PCOS) long before it was confirmed. The signs were there: the acne scars that littered my back, the irregular periods, the hair in places on my body that I didn't see on many of my friends. I suspected it from the moment that one of my best friends, who as a girl taught me about bleaching my body hair and waxing my legs, was diagnosed with it as a teenager.
Admitting all this publicly feels like an unburdening, but also an invitation to more shame. But I write this because my experience is far from unique. As many as one in 10 women have PCOS, a condition associated with hormonal disturbances that can range from weight gain, 'unwanted' body hair and hair loss, to irregular periods and struggles to conceive children (including an increased risk of miscarriage). It can leave women more likely to develop high blood pressure, high cholesterol, diabetes and heart disease. It is not clear what causes PCOS, but it is known to be passed down generational lines and can be influenced by lifestyle.
I was finally diagnosed with PCOS last year, at 30, and have been on a journey to understand what that means ever since. The thing that leaped out at me early on (and has since been uncovered by the BBC) is just how much information, and misinformation, exists around the condition. My Instagram feed is filled with medically unqualified influencers. Sorting through all that to figure out which nutritionists and health professionals to pay attention to, in the absence of adequate support from the doctors and nurses who gave me that initial assessment and diagnosis, has been a battle.
I've been encouraged to adopt unrealistic diets (so-called 'PCOS nutritionists' often suggest cutting out gluten, dairy and carbohydrates, despite a lack of evidence to show this is sustainable or useful for the condition); take unregulated supplements that can have significant side-effects; and sign up to expensive health plans and apps. I've been told to stop doing cardio and focus instead on weights and walking, because of the misguided idea that high-intensity exercise will cause my cortisol levels to rise to the degree that it will worsen my symptoms. In reality, all types of exercise can be beneficial.
Medical misogyny has been well documented, and women's healthcare is rarely taken seriously. I first asked my GP about symptoms during the pandemic, when, after a blood test, I was told that my hormone levels were normal and I didn't have the condition. Later, having an ultrasound for an unrelated matter, I was unceremoniously told that I had lots of follicles on my ovaries and probably had PCOS. When I mentioned the earlier blood test, the sonographer told me that this is not a good way to diagnose the condition, especially if you are using hormonal birth control.
Confusingly, PCOS does not cause cysts on the ovaries. 'They're not actual true cysts,' says Helena Teede, an Australian endocrinologist and expert in PCOS at Monash University in Melbourne. 'They're follicles or eggs that are just developing along a pathway, but they stop developing normally because they don't like the hormones that they're floating around in.'
There has long been chatter about renaming PCOS to something that is more representative of the breadth of symptoms it causes. The current name, Teede says, 'completely misses the fact that this is a hormonal condition; that it has long-term impacts; that it is psychological, dermatological, metabolic, reproductive and, beyond fertility, it goes into many other reproductive features. And it really has an impact on quality of life.' She says it's likely that the process to give it a new name will be completed this year – her organisation has opened a survey for anyone who wants to contribute.
Another myth is that women with the condition have a significant 'excess' of testosterone. And PCOS does open up some interesting questions about gender. But, says Teede, the idea that testosterone is an exclusively male hormone is false. Plus, women with PCOS do not typically have elevated levels of testosterone; it's more that our bodies are not very good at dealing with it. We have much less of the hormone than most men.
After my diagnosis at the ultrasound, I had a follow-up call with a nurse practitioner, where I was told simply that I should put up with my symptoms but come back when I wanted to get pregnant; because, of course, that is the only thing that young women aspire to. When I pushed, I was offered a drug named metformin, which is used to treat insulin resistance and diabetes.
It wasn't explained to me how this drug works and why it would be useful for my specific case. But, I have since learned, insulin resistance – when your body struggles to regulate your blood sugar levels – is one of the hallmark symptoms of PCOS and triggers a lot of the other issues that people with the condition face. Teede, however, points out that 'every woman has a different problem and a different life stage that's most important to them, and it's about their interpretation'. Doctors should think holistically about treatment plans for women with PCOS and listen to their concerns.
My own contrasting experience, though, is much more common, says Rachel Morman, the chair of the UK PCOS charity Verity: 'After 20 years of doing this work, I'm like: 'Why is this still happening?'' She had a similar conversation with doctors after she was diagnosed in the early 00s, with the added shock of being told that she wouldn't be able to have children at all. While it is true that about 70% of women with PCOS experience fertility struggles, after intervention that number drops significantly; the vast majority of women with the condition are able to get pregnant. Morman has three children now.
It's also important for women to know that a lot of the risks associated with PCOS in pregnancy (such as miscarriage, gestational diabetes and pre-eclampsia) are preventable. Before they start trying for a baby, women with the condition should have a full diabetes test and get their blood pressure checked, as well as aim for a healthy diet and active lifestyle.
But when doctors tell us that PCOS is something we should be concerned about only if we want to get pregnant, that is extremely frustrating, considering the wide range of effects it has on our bodies.
Morman says that while there is a lot more information available now than when she was diagnosed, some treatment options have become worse: hair removal treatments used to be offered on the NHS for women diagnosed with PCOS, but not any more. As Teede acknowledges: 'One of the reasons why people go to alternative sources of information is because they're not satisfied with what they get from the health practitioners.'
Misinformation about PCOS abounds, and much of it is repeated by medical professionals. To help counteract this, Teede helped to develop the extensively researched international evidence-based guidelines for PCOS in 2023, which I now regard as the holy grail of information about the condition. Her team has also created an app called AskPCOS, which can help women to find the right treatment pathways. It doesn't cover everything, but it is thorough, uses up-to-date research and doesn't make bold claims about 'curing' PCOS, as some people do on social media.
'There are a whole lot of individual practitioners, most of whom are not actually practitioners, who are there for financial gain,' says Teede. 'The biggest challenge I have is the misinformation, and then associated with that, the harm that's done by denigrating actual evidence-based strategies. Which, in the end, does a disservice for women with the condition.'
She is not wholly against what she terms 'complementary therapies' (ie supplements and diets), as long as women undertake them clear-eyed and unswayed by false claims. But she does not believe people will stop looking to these types of practitioners for support until there are more trustworthy medical repositories, alongside legal liability for people who provide misinformation.
Having researched PCOS over the past year (though there's still much to learn), here's what I've tried: in terms of monitoring the metabolic symptoms, I've checked my blood pressure and had screenings for diabetes and high cholesterol. My levels were fine. I've come off my birth control (some types of pill can help with the symptoms of PCOS; this one didn't) and started taking a well-researched supplement called myo-inositol, which may help with insulin resistance. But I've since come off it because it made me dizzy, a known side-effect for some people. I get periods most months, though I did so before I was put on the pill in my teens, so this may not have affected my ovulation.
In terms of cosmetic treatments, I have moved away from laser hair removal, which can cause women with PCOS to experience paradoxical hypertrichosis – the regrowth of darker hairs, seemingly stimulated by the laser. Instead, I have begun electrolysis, the only way to permanently remove hairs. I'm on a break from it as the treatment has been slow and moderately painful, causing breakouts that take weeks to heal.
Thankfully, the acne on my face has never been severe, but I have got topical treatment for it from an online dermatologist and benzoyl peroxide from my GP. My body acne has taken longer to get under control; I had a private online consultation with a dermatologist, which cost me £100, and have found reasonably priced skincare products that mostly work for me (shout out to Cerave).
The reason I am sharing this is not so that others with PCOS can attempt to mirror my journey. Everyone is different. For example, some women are comfortable with having visible facial hair. It is not inherently shameful and I hate that it is considered to be so. Instead, I am sharing because it shows how much time and energy I have had to put into dealing with PCOS. As it stands, all women with the condition need to go on a journey of evidence-based self-education, because it is unlikely that their primary care doctors will be able to adequately direct them, and there are very few accessible specialists. We have to test out treatments and cosmetic procedures – many unregulated – for ourselves, working through trial and error.
Perhaps one of the biggest learnings I've taken from this year has been around mental expenditure. While we undoubtedly have to demand better treatment from our doctors, and ask them to seek out research, those of us with chronic conditions have personal choices to make. Even in an ideal system, where I could be supported on and off medication with all the necessary tests, I would still have to make a judgment call about how much time and energy to invest in 'managing' my PCOS.
It is lifelong and incurable, and, for me at least, learning to live with it has become just as important as tackling some of the issues that it causes. That is not to say people with PCOS should give up – learn to embrace their facial hair or uncomfortable acne, or the more serious difficulties related to heart health or diabetes – but it does move it in my mind from a space of hopelessness to one of pragmatism. And it has allowed me to give myself a mental break.
'You do need to have at least four periods a year, because otherwise it's a higher risk of getting cancer of the womb, for example,' says Teede. She says that people with PCOS must go for an annual checkup, including blood pressure tests. 'But you don't need to carry that around permanently,' she adds.
The other brilliant news is that, in the background, things are changing. A new study shows that awareness of the syndrome has grown massively in the past eight years. In the UK, there is collaborative work happening to make sure that the syndrome becomes a research priority, including an all-party parliamentary group. 'We'll actually have proper pathways for PCOS treatment, so hopefully that should improve standard of care,' says Morman.
For me, I had my foray into the land of misinformation and I battled my way out of it. I have sought out community with other women who have the condition, and I'm taking steps to mitigate its potential effect on my fertility in the future.
Most of all, I feel incredibly thankful that I have been diagnosed in an era where there are women like Teede and Morman who are fighting for the recognition and evidence-based treatment of PCOS. We are not at a loss. We are at the bright beginning.