What is PCOS & why don’t we talk about it?

By: Regina Taylor

Polycystic Ovary Syndrome (PCOS) is a hormonal condition affecting up to 26.7 percent of women between the ages of 15 to 44 years old (Watson, 2019). This is over 5 million women worldwide, yet much of its causes and symptoms are highly stigmatized and misunderstood (Watson, 2019). PCOS is triggered by a hormonal imbalance in which women have higher levels of testosterone than usual, resulting in increased facial and body hair, baldness, and even long-term complications like diabetes or heart disease (Watson, 2019). The name comes from the “many cysts” that form in the ovaries, leading to the hormonal imbalance that is observed (“Polycystic ovary syndrome”). 

Doctors and scientists don’t understand exactly what causes PCOS, which can make it a difficult condition to manage (Watson, 2019). Along with symptoms like heavy and irregular periods, excess hair growth, acne, weight gain, and thin and falling out hair, PCOS can also lead to chronic diseases, sleep apnea, and even endometrial cancer (Watson, 2019). 

Especially important to note is the association between PCOS and mental health problems, specifically depression and anxiety (Watson, 2019). Women with PCOS experience increased hormonal fluctuations and unwanted symptoms that can negatively affect their emotions and self-esteem (Watson, 2019). In a study on the psychological impact of PCOS on women, it was found that receiving an early diagnosis, providing women with educational resources on the condition, and raising awareness about PCOS in the larger community all contributed to better mental health outcomes for patients with PCOS (Hadjiconstantinou et al, 2017). This means that increasing awareness about PCOS is an important first step towards advocating for the wellbeing of the millions of women who live with this condition. To help with this effort, I was able to hear the perspective of a woman who has PCOS in order to better understand the effect it has on her and so many other’s lives. 

“PCOS affects a huge population of women but is one of the most stigmatized conditions in women’s health because of the outward manifestations of the disease. The symptoms, such as increased levels of body hair, acne, facial hair, male- pattern baldness, weight gain, and loss of fertility, are often associated with poor hygiene or lifestyle choices. It is this stigma or the implication that women have ‘chosen’ or ‘caused’ their PCOS that leads women with the condition to feel shame. There are even instances when healthcare providers imply that their patients should ‘be able to manage the condition on their own.’ A lack of funding for PCOS focused research has led to a dearth in information about the disease and effective treatments. Currently, researchers believe that there are a few different ‘types’ or manifestations of PCOS.

Many women living with PCOS internalize the stigma associated with PCOS and its symptoms, leading to feelings of shame which, when added to the hormonal imbalance caused by PCOS, can lead to increased levels of mental health disorders. Although physical diversity when it comes to weight, body hair, or acne should not be something that people are ashamed of, many women diagnosed with PCOS feel a lack of control over their bodies and aren’t able to control their physical appearance.

Luckily, there are women who are speaking out to advocate for the 1 in 4 women living with PCOS worldwide. September 1st marks PCOS awareness day and in 2021, it also marks the start of the ‘World PCOS Day of Unity’ event, organized by The National Polycystic Ovary Syndrome Association. Hopefully with increased awareness of the disease and more research into the etiology of the disease, women with PCOS will be able to get the treatment they need to live well.”

Reference List:

Hadjiconstantinou, M., Mani, H., Patel, N., Levy, M., Davies, M., Khunti, K., & Stone, M. (2017, July). Understanding and supporting women with polycystic ovary syndrome: a qualitative study in an ethnically diverse UK sample. Endocrine connections. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5510451/

Polycystic ovary syndrome (PCOS). Johns Hopkins Medicine. (n.d.). Retrieved December 10, 2021, from https://www.hopkinsmedicine.org/health/conditions-and-diseases/polycystic-ovary-syndrome-pcos

Watson, S. (2019, March 29). What is PCOS? Healthline. https://www.healthline.com/health/polycystic-ovary-disease#what-is-pcos.

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