PCOS: a widespread, largely unexplained disorder in women
Although polycystic ovary syndrome (PCOS) affects 20% of women of reproductive age, little is known about this disorder. Why is this? And how can it be treated?
Suddenly I stopped getting my period at all. Annika Biedermann (24) was used to getting her period early or late. She’d always had an irregular cycle. But in the spring of 2022, it stopped altogether. First she missed one period … then two, then three. The young woman, who lives in Zurich and performs as a slam poet, did several pregnancy tests. She talked to her friends. And turned to Google.
But whoever she asked and wherever she looked, It seemed normal that a woman’s cycle is sometimes irregular, that it can be caused by stress, hormonal fluctuations, life itself. “After three months, I made an appointment with my gynaecologist, because my annual check-up was due anyway,” says Annika. Her doctor immediately did an ultrasound and a blood test.
The result had four letters: PCOS, or polycystic ovary syndrome. This is a disease in which the female body produces too many male hormones, i.e. androgens, leading to undesirable side effects that are atypical in women: an irregular menstrual cycle with sometimes no period or ovulation and thick hair in places on their body that are usually hair-free, including the face, stomach and back. They may also experience thinning hair and hair loss from the head. Women may also have many small follicle cysts in their ovaries which don’t mature and thus give the disease its name – polycystic ovaries. This leads to cycle disorders, often leading to trouble conceiving.
PCOS affects a surprising number of women of childbearing age, with almost 20% currently estimated to be affected. In fact, PCOS is the most common endocrinological disease in women of childbearing age. Despite these figures, many people have never heard of this disorder – neither women nor doctors. “This disorder has tended to be sidelined,” says expert Dr Susanne Hahn, who has been researching polycystic ovary syndrome intensively since 2001. Although the first mentions of PCOS can be traced back to the 17th century, it tends to be neglected in medical circles. “In comparison, endometriosis has come on in leaps and bounds in recent years,” says Hahn, who works in a practice for endocrinology in Düsseldorf.
She is referring to the fact that the illness is now openly discussed in public, in media reports and at the dinner table and now even people who don’t have the disease are talking about it. Hahn thinks that PCOS isn’t so widely known, because it doesn’t cause extreme physical pain like endometriosis. Endometriosis and PCOS may affect the same area of the body, but they are totally different diseases. One is on everyone's lips while the other goes virtually unnoticed. With PCSO, it’s easy to think that there’s no physical pain, so it can’t be all that bad.
But there’s more to it than that, because PCOS can take a toll on mental health. “Imagine how you would feel as a woman if you had to shave your face twice a day just to be able to go out for a drink in a bar,” says Hahn. The hardest-hitting symptoms for many women are the excessive hair growth and weight gain. “74% of women affected are overweight and two-thirds show signs of anxiety and depression,” explains Hahn. The psychological effects are sometimes severe. And many women think there’s something wrong with them, because they are overweight and suffering from hair loss, even though they watch what they eat, exercise regularly and take care of themselves.
In a society like ours, where the “ideal” woman is still slim and hair-free, this can be extremely stressful. And precisely because this body image is associated with so much shame, women can sometimes wait decades before going to the doctor. Women are scared to find out what’s wrong with them and blame themselves for their problems. In addition, many gynaecologists aren’t really aware of this disorder. “When young people present with an irregular menstrual cycle, doctors often simply prescribe the contraceptive pill,” says Hahn. “The women take the pill for 20 years, then stop taking it in their mid-30s when they want to start a family, and are amazed that they have PCOS symptoms, which essentially have always been there but have been suppressed by the pill.”
Annika’s cycle had always been irregular, sometimes lasting over 30 days. But she is not a typical case. Annika only has mild PCOS and was able to get her cycle back on track after a short ten-day hormone treatment, which left her feeling back to her normal self. No excess hair, no hair loss, no weight gain.
But there’s no guarantee that things will stay that way forever, because PCOS is a congenital disease. Doctors today still don’t know how and why it is inherited. “But one thing is clear: if you have PCOS, then you’ve got it for life,” says Hahn. PCOS is not caused, as some claim, by stress, a bad diet or defective contraception. It is genetic. We don’t know how it develops. The cause is unclear. “We still don’t know what causes PCOS”, says Hahn. And little light has been shed on the wide variety of symptoms experienced by different women. PCOS is suspected of being a complex multigenetic disorder. Different gene variants are involved, which is why not all women have the same symptoms.
The good news is that symptoms tend to disappear automatically from the age of 35 as the level of male hormones in the body falls. “There’s even some evidence that the risk of cardiovascular disease after the menopause is no longer increased in women who have PCOS compared to women who don’t.” It is not yet known why this is the case. There is still a lot of research to be done. But it’s good to know that the contraceptive pill can be used to eliminate the symptoms, including those such as acne. The main effect is achieved using oestrogen – it increases the level of the binding hormone for testosterone, which means it has less influence on the hormone balance, having an inhibiting effect.
However, the pill has come under fire in recent years and more and more women are reluctant to take hormones. There’s currently no cure for PCOS. Is there an alternative to taking the pill? Yes. Other treatments are available to ease the symptoms. Remedies include the well-known diabetes medication Metformin or the dietary supplement Inositol, which is available over the counter at the pharmacy. Hahn reveals that around 80% of those affected need some form of support to balance their hormone levels. Some products for external use can also be applied, such as creams to stop hair growth or tinctures to stimulate it.
Annika has been doing well since the diagnosis and hardly has any symptoms, but she still wants to talk about it in the hope that it will encourage others to seek treatment and to raise awareness of the disorder. “The first time I spoke publicly about my experiences and the diagnosis, I was contacted by so many people,” recalls Annika. With lots of praise, many questions and their own experiences of the illness. Some also wanted to know the name of a good doctor, while others were critical of the fact that the disease is still relatively unknown.
That’s why it’s so important to have a blood test alongside the ultrasound to determine whether or not you have PCOS. Anyone who consistently has a longer cycle lasting more than 35 days or a short cycle of less than 21 days should see a doctor eventually. And have an ultrasound and a blood test. This is especially important if you want to have children. “Women who have PCOS may not necessarily be any less fertile than a healthy woman,” says Hahn. But it may take longer to conceive or involve more complications, because ovulation is suppressed. Once you’ve been diagnosed, there are simple ways of handling it. Medication is available to trigger either normal or artificial ovulation.
Regardless of whether the symptoms are mild or severe, both Annika Biedermann and Susanne Hahn want to raise awareness of this disease among patients and in the medical community and thus pave the way for more research and treatment options – and one day maybe even a cure.
What applies to many areas of health and hormone balance is also true of PCO syndrome: what does the body good also helps ease the symptoms. So, exercise, heat, a diet rich in vegetables, little sugar, high-quality fats and little stress help you lead a healthier lifestyle.
Taking probiotics such as inulin, which is found in vegetables such as chicory and parsnips, helps regulate the gut. And organic kefir or yoghurt enriched with bifidus bacteria also support the microbiome. In addition to taking dietary supplements from the pharmacy, it is essential to seek professional medical help, says Hahn.
About the expert
Dr Susanne Hahn works in a practice for endocrinology in Düsseldorf and is an expert in PCOS. She has been researching polycystic ovary syndrome for over 20 years.