Polycystic ovary syndrome (PCOS): the most common hormone disorder in women
14/9/2023
Translation: Katherine Martin
Hardly anyone’s heard of polycystic ovary syndrome. And yet, roughly 1 in 5 women of childbearing age worldwide are affected by it. Perhaps even more once unreported cases are included in the figures. Here’s why the disease is so rarely diagnosed.
Receding hair line, hairy upper lip, fertility issues, obesity. What might sound like a description of a stereotypical middle-aged man is, in fact, a list of symptoms. Symptoms of one of the most common hormonal disorders in women of reproductive age: polycystic ovary syndrome, or PCOS for short. Heard of it? Me neither.
This despite estimates suggesting that up to 15 per cent of women worldwide are affected by the condition. «In our own work and clinical studies, we’re actually seeing a much higher prevalence,» says Dr Mareike Roth-Hochreutener, a senior physician at Zurich University Hospital’s Department of Reproductive Endocrinology. An expert on polycystic ovary syndrome, Roth-Hochreutener also heads up the university’s PCOS centre.
PCOS is difficult to diagnose, so many cases are never recorded: «PCOS is a chameleon. There’s no definitive primary symptom that all PCOS sufferers have.» Time to cast some light on the subject, go into the symptoms, diagnosis and treatment, and close the knowledge gap.
Polycystic ovary syndrome: what we currently know about causes
Simply put, PCOS is a hormonal disorder with a range of symptoms in women of childbearing age. Like endometriosis, PCOS is one of the most common causes of female infertility.
As Dr Roth-Hochreutener explains, it’s still unclear how the condition arises. Experts suspect PCOS results from numerous interacting causes, with genetic predisposition also seeming to play a part.
«One thing that’s been established already is that PCOS sufferers often have issues metabolising insulin. Kind of like a precursor to diabetes.» This disruption to the metabolism of blood sugar subsequently leads to a hormone imbalance.
Roth-Hochreutener explains: «Excess insulin increases the formation and release of androgens, or male hormones. This disrupts the maturation of eggs in the ovaries, a basic requirement for menstrual cycles and pregnancy.»
The thing is, this excess of male sex hormones – also known as hyperandrogenaemia – is only present in around two thirds of PCOS patients. Like I said, it’s complicated.
PCOS: a complex set of symptoms
This hormone imbalance results in a complex set of symptoms. The one that most commonly leads to a diagnosis, Roth-Hochreutener says, is menstrual cycle disruption: «The symptom that prompts about three quarters of our PCOS patients to come and see us is oligomenorrhoea. In other words, very long cycles with more than 35 days between periods.»
In addition, most women with PCOS have an excess of follicles (cysts) on their ovaries, which is where the cyst in «polycystic» comes from.
Incidentally, women whose only symptom is excess ovarian follicles are said to have PCO (polycystic ovaries). PCOS (polycystic ovary syndrome), on the other hand, is only diagnosed if the patient presents with additional symptoms.
One example of these other symptoms is an increase in male hormone levels. This either shows up in blood tests or manifests as a (usually unpleasant) symptom known as hirsutism or virilisation. It’s recognised in patients exhibiting male-pattern hair growth, such as on the chin, upper lip, chest, abdomen, neck or back. They can also experience hair loss on their head, develop a receding hairline or even baldness. However, oily skin and acne are also common symptoms. Hirsutism affects about 30 per cent of PCOS patients.
Finally, weight control issues are yet another indicator of polycystic ovary syndrome: «Two thirds of PCOS patients are overweight. Half are even obese,» says Dr Roth-Hochreutener.
Polycystic ovary syndrome: numerous symptoms, one diagnosis
As you can imagine, diagnosing PCOS is anything but easy, and calls for specialist knowledge. In many young women, symptoms such as irregular menstrual cycles are suppressed by the contraceptive pill, only coming to light years later when they struggle to fall pregnant. Roth-Hochreutener confirms this: «Patients who’re unable to conceive are diagnosed more often on average.»
Diagnosis is helped along using the Rotterdam criteria, whereby women are screened for three key symptoms:
- Menstrual cycle disruption (excessively long intervals between periods or not getting a period for longer than three months)
- Number of ovarian follicles on a vaginal ultrasound (20 or more follicles on at least one ovary) or increased ovarian volume
- Hyperandrogenaemia and hirsutism
If at least two of these three symptoms are present, the diagnosis is polycystic ovary syndrome. Hormonal diagnostics via blood test and an ultrasound examination of the ovaries should be done early in the patient’s menstrual cycle, i.e. within the first five days.
If the patient is taking any hormonal medications, such as birth control pills, they should stop doing so three months before the diagnostic process, so that it doesn’t skew the results.
Cancer, diabetes, depression: the risks of PCOS
Polycystic ovary syndrome doesn’t just come with numerous symptoms – it also carries a number of risks. Especially if it’s left untreated. «People with PCOS are at increased risk of cardiovascular disease due to high blood pressure, obesity, elevated blood lipids and diabetes. Up to 95 per cent of overweight and 75 per cent of non-overweight PCOS patients will develop diabetes during their lifetime. In the long term, these cardiovascular risk factors can lead to serious consequences such as heart attacks or strokes.»
The cardiovascular risks associated with PCOS were recently confirmed in a study. Researchers did, however, go on to note that, «No significant difference in overall mortality was observed.» Even so, they concluded that further studies were necessary to identify exactly how hormone imbalances interacted with the cardiovascular system.
Endometrial carcinoma (cancer of the uterine lining) is also more likely to develop in PCOS sufferers. «Because women with PCOS ovulate less frequently, the corpus luteum hormone – the basis for shedding the lining of the womb – isn’t formed. Obesity and diabetes also further increase the risk of endometrial cancer,» Roth-Hochreutener says.
A cohort study done in Taiwan involving 8,155 PCOS patients underlined the elevated risk of uterine cancer. Based on the data, researchers were able to rule out PCOS patients being at a higher risk of other cancers of the female reproductive organs, including breast cancer. Other studies, however, paint a different picture, stating that PCOS patients run a greater risk of developing ovarian cancer.
What’s more, PCOS is a source of psychological stress. «Women with excess body hair, acne and obesity suffer,» Roth-Hochreutener says. «There’s an increased incidence of anxiety and eating disorders in these patients. Depression, too. Unfortunately, this isn’t talked about nearly enough. Studies show that PCOS sufferers’ quality of life is reduced.»
PCOS is incurable – so what therapies are available?
Polycystic ovary syndrome is complex. As we’ve covered, it’s associated with a variety of symptoms, so it figures that several specialities need to be involved in treating it. «At our PCOS centre, we work with dermatologists, gynaecologists, obesity specialists, diabetologists, sports physicians, psychologists and psychiatrists,» Roth-Hochreutener says. «There’s no one-size-fits-all approach to treatment. Each patient needs to be advised and treated individually, in an interdisciplinary manner, depending on the primary symptom they’re experiencing.»
Since PCOS is incurable, treatments focus on controlling the symptoms. Regulating the menstrual cycle is at the forefront of these efforts. One way this is done is by taking luteal hormones or the contraceptive pill during the second half of the cycle. The drug metformin is also demonstrated to have a positive impact on menstrual cycle regulation, as it can balance blood sugar and hormone levels.
It’s also possible that patients will have follicles or parts of the ovary removed surgically, but this isn’t a first-line therapy. Roth-Hochreutener says: «Data shows that surgery inhibits the production of androgenic hormones. In turn, this can improve hirsutism, acne, menstrual cycle disruption and chances of falling pregnant. However, sufferers should only consider this as a last resort.»
The first path to improving symptoms isn’t complex therapies – it’s how patients live their lives: «Lifestyle is the foundation of treatment. It’s almost the most important thing,» says Roth-Hochreutener. Eating a healthy diet and doing exercise are already considered important ways to regulate symptoms: «Weight loss can lower male hormone levels, increase fertility and reduce other risk factors.»
The World Journal of Diabetes recommends a Mediterranean diet combined with regular exercise, dubbing it the most effective way to get symptoms under control. Dr Roth-Hochreutener says: «We don’t recommend any specific diet to our patients, as restrictive diets can’t be adhered to on a long-term basis. The key is eating a balanced diet and getting plenty of exercise.»
Header image: ShutterstockOlivia Leimpeters-Leth
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I'm a sucker for flowery turns of phrase and allegorical language. Clever metaphors are my Kryptonite – even if, sometimes, it's better to just get to the point. Everything I write is edited by my cat, which I reckon is more «pet humanisation» than metaphor. When I'm not at my desk, I enjoy going hiking, taking part in fireside jamming sessions, dragging my exhausted body out to do some sport and hitting the occasional party.