The experiences of countless women with PCOS beg the question: Why is it not more thoroughly researched? The exact cause of PCOS is unknown and there is not yet a cure.
Polycystic ovary syndrome (PCOS) is a condition mainly characterized by 3 features:
Elevated levels of male sex hormones, such as testosterone. This can manifest itself as excess facial and body hair, acne and thinning head hair.
Irregular or no periods. This happens due to eggs failing to be released or develop properly in the ovaries.
Fluid-filled sacs in the ovaries.
Typically, diagnoses are made when at least two of these three features are present. In addition to the above, it is not uncommon for individuals to develop insulin resistance, resulting in higher insulin levels, type 2 diabetes and weight gain. The effects of PCOS on one’s mental wellbeing can cut deep, as a direct consequence of the hormonal imbalance or simply due to having to deal with the symptoms that PCOS forces onto women.
Additionally, PCOS is one of the most common causes of female infertility. It leaves many surprised when their PCOS is only diagnosed when they are struggling to get pregnant. And if someone with PCOS does become pregnant, they have a higher chance of a miscarriage or complications during their pregnancy.
In the United States and the United Kingdom, 1 in 10 women have PCOS and it disproportionately affects women of color. With such variable symptoms, up to 75% of women who suffer from PCOS do not receive any diagnosis. Weight bias also enters the picture during medical consultations. Many women of color fear having their concerns dismissed, simply being told to try harder to be healthy and sent away without any further investigations into the possible conditions, like PCOS, that may be lurking. Cultural taboos about infertility as well as facial and body hair, for example, can build yet another barrier in encouraging conversations about PCOS and its symptoms. Additionally, it is unhelpful that there is no single set of criteria that medical professionals agree on when it comes to diagnosing PCOS.
Despite PCOS being so common, the funding it has received over the decades has been scarce. Not enough is known about the condition for clear guidance to be given to women about how to manage their symptoms and about the lifestyle changes they may want to consider. There certainly are gaps to be filled. If healthcare professionals are not adequately equipped to advise women with PCOS, that space will be taken by people trying to make profits from supplements and diets with claims not backed by evidence. That is something we should aim to avoid.
I hope that the future sees PCOS get the research focus it deserves.