
I WAS 19, my face raging with acne, when my dermatologist started asking me questions that seemed to have nothing to do with my skin. âAre your periods regular? Do you have any excess body hair?â he asked. âYou may have polycystic ovary syndrome,â he concluded. I had no idea what he was talking about. âIt can make it difficult to have children,â he said as he saw me out.
Reeling, I went to my family doctor, who ordered blood tests and an ultrasound of my ovaries that confirmed I had polycystic ovary syndrome, or PCOS. But she admitted she didnât know much about it, leaving me confused and miserable about this mysterious condition I had suddenly been saddled with.
Advertisement
Many of my friends have recounted similar experiences. Despite PCOS being the most aged 18 to 45 and a leading cause of infertility, it has been hard for us to get a straight answer about what it actually is or what to do about it.
Seventeen years on from my diagnosis, however, the tide is turning. Researchers are finally piecing together the causes of PCOS and it is being taken seriously as a condition that doesnât just affect the ovaries, but also has cardiovascular, metabolic and psychological repercussions. As a result, the condition is even set to get a different name later this year (see âMisleading monikerâ). And whatâs more, this clearer understanding is opening up routes to new treatments.
The first doctors to characterise PCOS were Irving Stein and Michael Leventhal at Northwestern University in Chicago. In 1935, they published a : cysts on their ovaries, irregular or no periods, unsuccessful attempts to become pregnant, and some with acne, obesity or excess hair on their faces or bodies. The condition was originally called Stein-Leventhal syndrome before later becoming known as polycystic ovary syndrome.
What is PCOS?
Today, a PCOS diagnosis is based on having . The first is high levels of male sex hormones like testosterone, which can cause acne, excess hair on the face and body and thinning head hair. The second is irregular or no periods, which occur because eggs often havenât developed properly in the ovaries. This prevents their regular monthly release in the form of ovulation, meaning that it can take longer to become pregnant. The third is the presence of , which are now understood to be eggs that are stuck in an immature state, rather than actual cysts.

In addition to these key features, around 50 to 70 per cent of individuals with PCOS , which can lead to higher levels of this hormone, type 2 diabetes, weight gain, high blood pressure and heart disease. PCOS also increases the risk of and , and can cause anxiety, depression and reduced sex drive in some people.
The psychological effects may be directly caused by hormonal imbalances. Alternatively, they might arise because âif youâre a teenager, when PCOS symptoms emerge, and youâre gaining weight rapidly, you have significant acne, your periods are all over the place and you have body hair where you donât want it, it can have a really significant impact on your self-esteemâ, says at Monash University in Melbourne, Australia.
Finally, people with PCOS who become pregnant are more likely to have miscarriages or complications like gestational diabetes or preterm birth.
PCOS affects around 5 to 18 per cent of cis women and , although the reason why this latter figure is higher has yet to be pinned down. Despite being relatively common, it has long been one of the most neglected health conditions, says Teede. âItâs twice as common as diabetes but gets less than a hundredth of the funding,â she says. at the Karolinska Institute in Sweden tells a similar story. âUp until about 10 years ago, I would never put âPCOSâ in the title of my research grant applications because it really dragged down my chances of getting funding,â she says.
Part of the problem is that it is âeverybodyâs business and nobodyâs businessâ, says Teede. The many symptoms of PCOS, which vary widely between individuals, means it is managed by a range of health professionals: endocrinologists, gynaecologists, reproductive specialists, dermatologists, primary care doctors, dieticians and so on. For a long time, no one was sure who should be steering the ship and each speciality treated PCOS differently, which âconstantly created confusing messagesâ, says Teede.
To rectify this, Teede led the development of the , which were published in 2018. They were based on consultations with more than 3000 health professionals and people with the condition from 71 countries. âWe needed a really strong cut-through with all the experts in the world saying the same thing,â she says.
The guidelines explain how to diagnose PCOS and manage it using existing treatments. Diet and exercise interventions are recommended to begin with, since these have been shown to simultaneously improve the metabolic, reproductive and psychological features of the condition. This is because diet and exercise can assist weight loss and improve blood sugar control, which, in turn, reduce insulin and testosterone levels.
Metformin and other PCOS treatments
Personally, I have had some luck with lifestyle management. I tried a low GI (glycaemic index) diet after reading a small study that showed that 95 per cent of women with PCOS who adopted this diet â which involves eating foods that minimise blood sugar spikes â . Amazingly, my menstrual cycles shortened from around 70 to 40 days when I tried it, but I wasnât able to keep it up long term because of my love of white rice and bread.
If lifestyle changes arenât enough, certain medications can also help. The oral contraceptive pill, for example, can regulate periods and reduce acne and unwanted body hair. A drug called isotretinoin can also ease acne â it cleared mine up in a matter of weeks â and laser treatment can remove unwanted hair. Letrozole can stimulate regular ovulation in individuals trying to conceive and metformin can help to combat insulin resistance and weight gain.
These treatments donât always work, however, and they donât get to the root causes of PCOS. âThere is no cure so far â all the treatment options available treat the symptoms and not the disease itself,â says at the French National Institute of ÎçŇš¸ŁŔű1000źŻşĎ and Medical Research. He and others are now trying to develop PCOS-specific drugs.
To do this, they first need to understand exactly what drives the condition. A starting point is that it often runs in families. Stener-Victorin and her colleagues, for example, found that women in Sweden were . No single gene has been found to be responsible for PCOS, but certain appear to be linked with the condition. Still, these genetic variations donât tell the whole story of how PCOS is passed down generations.

Growing evidence suggests PCOS-related hormonal imbalances during pregnancy can also have an effect on the fetus. âIn a woman with PCOS, you have both the genetic factors and the in utero environment,â says Stener-Victorin. âI think itâs likely that you may carry some susceptibility genes and then you have an in utero environment that triggers its onset.â Two hormones suspected to be involved in this in utero effect are testosterone and , both of which tend to be elevated in those with PCOS.
Stener-Victorin and her colleagues have found that caused their female offspring to develop many of the hallmarks of human PCOS, including irregular cycles, and greater fat mass and body weight. Similarly, when Giacobiniâs team , their female offspring had irregular cycles, the appearance of âpolycysticâ ovaries, elevated testosterone, insulin resistance, higher body weight and greater fat mass. âWe now have an animal model that not only recapitulates the reproductive aspects of PCOS, but also the metabolic component seen in many women,â says Giacobini. âSo, we can use these animals to really investigate the disease and design new treatment options.â
Most recently, his team discovered that the daughter mice with PCOS-like symptoms, whose mothers were injected with excess AMH during pregnancy, had involved in inflammation. This has led Giacobini to believe that PCOS is actually an inflammatory condition. His team found increased expression of inflammatory genes in the brain, ovaries, liver and fat of the mice, which he says may explain why these organs are all affected by the condition (see âNot just ovariesâ, pictured above). This fits with emerging evidence of a link between inflammation and PCOS in people. A 2021 analysis led by at the University of Nottingham, UK, for instance, found that women with PCOS had significantly called C-reactive protein compared with those without the condition.
Could these findings lead to new treatments? Giacobiniâs team has spent the past few years developing drugs to lower AMH levels. The researchers are about to test these in mice, before hopefully progressing to human trials. âBut we need to be very cautious because there are AMH receptors in different parts of the brain and a range of organs,â he says. âWe cannot predict yet whether such treatment may trigger undesirable side effects until we fully comprehend the role of AMH in all those organs.â Interestingly, AMH declines with age, which may explain why some with PCOS who were unable to conceive naturally in their 20s and 30s are able to do so in their 40s, when their AMH levels fall into the normal fertility range, says Giacobini. This delayed fertility window could also be the reason why .

Another treatment option may be drugs that correct the altered expression of inflammatory and other genes implicated in PCOS, says Giacobini. Last year, his team showed that in female mice by giving them a drug called S-adenosylmethionine that corrected the altered gene expressions. This drug couldnât be safely given to people because it affects too many other genes, but it may be possible to develop more tailored treatments in the future, says Giacobini.
Teede says these approaches are worth pursuing, but cautions against extrapolating too far from animal studies. âPCOS is not caused by one mechanism, itâs multiple mechanisms that add up together,â she says. âIf youâve got an animal model that uses one mechanism to induce a PCOS-like status, you might be able to reverse that one mechanism, but treating a complex multifactorial condition in humans is harder.â
In the meantime, Teede believes that PCOS management could be vastly improved just by providing people who are diagnosed with the condition with better information about what it is and how to manage it.
There are still many common misconceptions about PCOS that need to be addressed, she says. For example, my biggest worry when I was diagnosed was that I wouldnât be able to have children â a concern that is very common, says Teede. In fact, âresearch shows that women with PCOS have the , often they just need a bit of a helpâ, she says. âThat doesnât have to be IVF â medication that stimulates ovulation is often all thatâs required.â
PCOS myth busting
To help bust these myths, Teede and her colleagues released a free app called AskPCOS in 2018 that provides evidence-based answers to the 93 most common questions asked about the condition. âItâs now in 12 languages and is used by about 30,000 women in 176 countries,â she says. âItâs important to have something like this because thereâs so much rubbish out there â people are trying to make money off vulnerable women by selling diets and supplements for PCOS that have no evidence.â At the same time, her team has created simple resources for health professionals to allow better diagnosis and management.
My own journey with PCOS has been unpredictable. After all those years worrying that I wouldnât be able to have a family, it was a happy surprise to conceive my two children naturally. However, there were several miscarriages along the way that may have been related to my PCOS.
The next twist came after my pregnancies, when my once erratic periods suddenly became like clockwork and have continued like that to this day. This is apparently quite common, although no one knows why.
There are many mysteries of PCOS that still need to be unravelled, but it seems like we are finally gaining a better understanding of the condition and improved diagnosis, education and treatment. I just wish I could go back to that 19-year-old girl leaving the dermatologistâs in tears and tell her it was going to be alright.
Misleading moniker
Is it time to rename polycystic ovary syndrome? There is a growing push to do so since it is now recognised as a whole-body condition, people can be diagnosed with it even if they donât have âpolycysticâ ovaries and we now know that the âcystsâ are undeveloped eggs, not actual cysts.
âWe desperately need a name change,â says Helena Teede at Monash University in Melbourne, Australia. âThe name should reflect what it actually is. Having a name around the ovaries misses the diversity of the condition.â
Teede and her colleagues are consulting health professionals and people with the condition to agree on a new name â the most preferred one at this stage is âreproductive metabolic syndromeâ.
They hope to formalise this name change in the middle of this year when they release an updated version of the international guidelines on the diagnosis and treatment of the condition.
Alice Klein is a reporter for New Scientist