The disorder that we know today as ‘polycystic ovary syndrome’ (PCOS) affects about 1 in 10 women worldwide and is associated with both reproductive and metabolic dysfunction, impaired immune function, poor mental health and circulatory dysfunction, yet its aetiology remains poorly understood and patients remain inadequately treated. And one reason for that might be its name. A name should be readily informative and effectively guide practitioners, funders and the public in their understanding of what the medical disorder is about. A name should not cause confusion and act as a barrier to effective education and communication.
PCOS has already gone through several name changes, from “Stein-Leventhal syndrome” after the individuals who first reported on its symptoms, to “polycystic ovarian disease” (PCOD) based on the salient physical finding of polycystic ovaries first observed by Stein and Leventhal. It soon became clear that it is a disorder and not a specific disease, hence its final name change to PCOS. However, polycystic ovary syndrome implies that polycystic ovaries are an essential condition or even the cause of the syndrome, which they are not. In fact, they are neither necessary nor sufficient to diagnose the syndrome. Furthermore, the name has low brand equity, since few corporate or governmental funding agencies consider the disorder as anything more than a female reproductive disorder. Even though its prevalence and overall impact on quality of life is on par with or more extreme than with diabetes, the funding and support for PCOS pale by comparison.
To complicate things further, PCOS is a very heterogenous syndrome, presenting in 3 distinct forms: (1) an anovulatory form with hyperandrogenism, with or without polycystic ovaries and metabolic dysfunction, (2) an ovulatory form with hyperandrogenism and polycystic ovaries, but with or without metabolic dysfunction, and (3) a ‘normoandrogenic’ form with anovulation, polycystic ovaries and metabolic dysfunction. Ultimately, there is no uniform clinical feature or a clear understanding of its aetiology, so to rebrand PCOS in a way that adequately communicates the complexity of the syndrome is a rather daunting task. Even the eminent consensus panel appointed by the NIH shied away from suggesting a new name, recognising the difficulty.
Adding to the complexity of the matter, there has been some much needed, mounting advocacy for PCOS, giving the name “PCOS” some brand capital. Changing the name now might actually be a setback in spreading awareness, securing more funding, and generally enhancing the public’s understanding of the prevalent medical condition. Any move to change the name will have to be extremely well conceived, have widespread authority behind it, and be accompanied by a very successful and well-resourced educational campaign.
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