Polycystic ovary syndrome (PCOS) affects an estimatedof women, and yet “it has been quite a black box for many years,” as , an assistant professor of endocrinology, diabetes, and hypertension at Harvard Medical School, Boston, puts it. That black box encompasses not only uncertainty about the etiology and pathophysiology of the condition but even what constitutes a diagnosis.
Even theon PCOS management endorsed by the American Society for Reproductive Medicine – a document developed over 15 months with the input of 37 medical organizations covering 71 countries – notes that PCOS diagnosis is “controversial and assessment and management are inconsistent.” The result, the guidelines note, is that “the needs of women with PCOS are not being adequately met.”
One of the earliest diagnostic criteria, defined in 1990 by the National Institutes of Health, required only hyperandrogenism and irregular menstruation. Then the 2003 Rotterdam Criteria added presence of polycystic ovaries on ultrasound as a third criterion. Then the Androgen Excess Society determined that PCOS required presence of hyperandrogenism with either polycystic ovaries or oligo/amenorrhea anovulation. Yet the Endocrine Societyexcess androgen levels are seen in 60%-80% of those with PCOS, suggesting it’s not an essential requirement for diagnosis, leaving most to diagnose it in people who have two of the three key criteria. The only real agreement on diagnosis is the need to eliminate other potential diagnoses first, making PCOS always a diagnosis of exclusion.
Further, though PCOS is known as the leading cause of infertility in women, it is more than a reproductive condition, with metabolic and psychological features as well. Then there is the range of comorbidities, none of which occur in all patients with PCOS but all of which occur in a majority and which are themselves interrelated. Insulin resistance is a common feature,of people with PCOS. Accordingly, occurs in at least a third of people with PCOS and type 2 diabetes in those with PCOS as well.
Obesity occurs in anof women with PCOS in the United States, though it affects only about 50% of women with PCOS outside the United States, and those with PCOS have an of hypertension. Mood disorders, particularly and but also, to a lesser extent, bipolar disorder and obsessive-compulsive disorder, are in people with PCOS. And given that these comorbidities are all , it’s unsurprising that recent studies are finding those with PCOS to be at greater risk for and .
“The reality is that PCOS is a heterogenous entity. It’s not one thing – it’s a syndrome,”