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I<\/span> 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\u2019t 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.<\/p>\n 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, \u201cunwanted\u201d 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.<\/p>\n 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.<\/p>\n There are a lot of practitioners who are there for financial gain. The biggest challenge I have is the misinformation<\/p>\n I\u2019ve been encouraged to adopt unrealistic diets (so-called \u201cPCOS nutritionists\u201d 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\u2019ve 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.<\/p>\n Medical misogyny has been well documented, and women\u2019s 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\u2019t 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.<\/p>\n Confusingly, PCOS does not cause cysts on the ovaries. \u201cThey\u2019re not actual true cysts,\u201d says Helena Teede, an Australian endocrinologist and expert in PCOS at Monash University in Melbourne. \u201cThey\u2019re follicles or eggs that are just developing along a pathway, but they stop developing normally because they don\u2019t like the hormones that they\u2019re floating around in.\u201d<\/p>\n 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, \u201ccompletely 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.\u201d She says it\u2019s likely that the process to give it a new name will be completed this year \u2013 her organisation has opened a survey for anyone who wants to contribute.<\/p>\n <\/span>PCOS can affect your blood pressure.<\/span> Photograph: Posed by models; ZeynepKaya\/Getty Images<\/p>\n Another myth is that women with the condition have a significant \u201cexcess\u201d 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\u2019s more that our bodies are not very good at dealing with it. We have much less of the hormone than most men.<\/p>\n 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<\/em> 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.<\/p>\n It wasn\u2019t explained to me how this drug works and why it would be useful for my specific case. But, I have since learned, insulin resistance \u2013 when your body struggles to regulate your blood sugar levels \u2013 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 \u201cevery woman has a different problem and a different life stage that\u2019s most important to them, and it\u2019s about their interpretation\u201d. Doctors should think holistically about treatment plans for women with PCOS and listen to their concerns.<\/p>\n <\/span>Rachel Morman.<\/span><\/p>\n My own contrasting experience, though, is much more common, says Rachel Morman, the chair of the UK PCOS charity Verity: \u201cAfter 20 years of doing this work, I\u2019m like: \u2018Why is this still happening?\u2019\u201d 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\u2019t 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.<\/p>\n It\u2019s 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.<\/p>\n 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.<\/p>\n 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: \u201cOne of the reasons why people go to alternative sources of information is because they\u2019re not satisfied with what they get from the health practitioners.\u201d<\/p>\n 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\u2019t cover everything, but it is thorough, uses up-to-date research and doesn\u2019t make bold claims about \u201ccuring\u201d PCOS, as some people do on social media.<\/p>\n \u201cThere are a whole lot of individual practitioners, most of whom are not actually practitioners, who are there for financial gain,\u201d says Teede. \u201cThe biggest challenge I have is the misinformation, and then associated with that, the harm that\u2019s done by denigrating actual evidence-based strategies. Which, in the end, does a disservice for women with the condition.\u201d<\/p>\n She is not wholly against what she terms \u201ccomplementary therapies\u201d (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.<\/p>\n H<\/span>aving researched PCOS over the past year (though there\u2019s still much to learn), here\u2019s what I\u2019ve tried: in terms of monitoring the metabolic symptoms, I\u2019ve checked my blood pressure and had screenings for diabetes and high cholesterol. My levels were fine. I\u2019ve come off my birth control (some types of pill can help with the symptoms of PCOS; this one didn\u2019t) and started taking a well-researched supplement called myo-inositol, which may help with insulin resistance. But I\u2019ve 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.<\/p>\n In terms of cosmetic treatments, I have moved away from laser hair removal, which can cause women with PCOS to experience paradoxical hypertrichosis \u2013 the regrowth of darker hairs, seemingly stimulated by the laser. Instead, I have begun electrolysis, the only way to permanently remove hairs. I\u2019m on a break from it as the treatment has been slow and moderately painful, causing breakouts that take weeks to heal.<\/p>\n 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 \u00a3100, and have found reasonably priced skincare products that mostly work for me (shout out to Cerave).<\/p>\n <\/span>Exercise \u2013 yes, even cardio \u2013 can benefit people with PCOS.<\/span> Photograph: Posed by model; Drs Producoes\/Getty Images<\/p>\n 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 \u2013 many unregulated \u2013 for ourselves, working through trial and error.<\/p>\n Perhaps one of the biggest learnings I\u2019ve 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 \u201cmanaging\u201d my PCOS.<\/p>\n 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 \u2013 learn to embrace their facial hair or uncomfortable acne, or the more serious difficulties related to heart health or diabetes \u2013 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.<\/p>\n \u201cYou do need to have at least four periods a year, because otherwise it\u2019s a higher risk of getting cancer of the womb, for example,\u201d says Teede. She says that people with PCOS must go for an annual checkup, including blood pressure tests. \u201cBut you don\u2019t need to carry that around permanently,\u201d she adds.<\/p>\n 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. \u201cWe\u2019ll actually have proper pathways for PCOS treatment, so hopefully that should improve standard of care,\u201d says Morman.<\/p>\n 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\u2019m taking steps to mitigate its potential effect on my fertility in the future.<\/p>\n 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.<\/p>\n