Note: If you think you have symptoms of PCOS, please make an appointment with your local GP/medical practitioner or gynecologist.
When polycystic ovary syndrome was first named in 1939, it disappeared behind the closed doors of “women’s issues” for years. Eighty-six years later, the condition remains a whispered taboo, and Black women are now turning to the internet to demystify the condition. As September marks PCOS Awareness Month, medical research points to a wider dilemma. PCOS is more than a women’s reproductive issue; it’s a health equity and social issue. Now more than ever, medical institutions must consider intersectionality in the hopes of achieving better diagnosis and treatment for Black women living with PCOS.
Polycystic ovary syndrome (PCOS) is defined as “a hormonal disorder common among women of reproductive age”. The ovaries produce an abnormal excess of androgens that are naturally present in women in small amounts. Symptoms of PCOS are not a one-size fits all and doctors disagree on how PCOS should be diagnosed. Common signs of the disorder include missed or irregular periods, enlarged ovaries, excess body hair (hirsutism), acne or oily skin, weight gain and infertility. Typically, doctors look for two to three symptoms to meet the criteria of diagnosis. Despite the condition’s prevalence, an estimated half of these cases will go undiagnosed.
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There are no specific tests for diagnosing PCOS so testing its symptoms has proven to be a lengthy and intrusive process. When seeking a diagnosis, doctors will ask about your medical history and follow-up with a physical examination. These range from a pelvic scan to check the health of your reproductive organs, an ultrasound to inspect the size of your ovaries and blood tests to spot excess androgens and high glucose levels. An example of how challenging it is to get a diagnosis of PCOS is Anon’s* (she/they) story. Anon is a 24-year-old woman based in Washington. At first, when Anon was experiencing higher glucose levels in 2018, her doctor reckoned it was thyroid related and recommended she see an endocrinologist. It took three years for Anon’s doctor to guess the presence of PCOS. In 2020, her doctor finally prescribed an ultrasound to check for the presence of cystic ovaries. While the appearance of her large, bubbled ovaries should have confirmed the identification of PCOS, it was still not enough to receive a proper diagnosis, leaving her still in an enduring limbo.
The drought of thorough and diverse research continues to obstruct the effectiveness in diagnosing the condition. In a recent PLOS medicine paper entitled Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled, the authors state that the future of medical research should, “provide meaningful opportunities to examine the complex relationship of ancestral influences, environmental exposures, and social factors.” Researcher Maryam Kazemi, Ph.D, added to this when she revealed that most of the participants in PCOS research are white women. Furthermore, Sasha Ottey, the Executive Director of the PCOS Challenge: The National Polycystic Ovary Syndrome Association, states that this is harmful because PCOS doesn’t present itself the same in all women. As stated in the research article Why PCOS Affects Women of Color Differently, “Black and Latinx people have a higher morbidity and mortality due to cardiovascular disease and diabetes.” Understanding these racial differences in PCOS is integral in prevention strategies. Ottey adds that a lack of research towards these racial variations is a huge obstacle. For example, “one Australian PCOS study didn’t [bother to mention] Black people in its first iteration.”
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Dismantling the obstacles in diagnosing PCOS needs to shift beyond the sole locus of race to consider multiple factors. Coined by Kimberlee Crenshaw, intersectionality is the idea that “multiple systems of oppression can exist at the same time.” As an analytical tool, intersectionality can decolonise global health systems by exploring the relationships between coexisting identities such as race, gender, age, class, sexual orientation and migration status. Furthermore, the export of western biomedical knowledge is most prevalent in discourse disputing the BMI. Ottey states that BMI is not the yardstick of good health because “most health information (like BMI) is based on white men in [the] early 1900s.”
Rita is a 27-year-old Kenyan woman based in New York. She’s endured fatphobia since she was a child. When Rita met with a doctor, the doctor immediately made assumptions based on Rita’s looks. “I think it’s fatphobic that plus size people go to the doctor for one issue and are told to lose weight in the spirit of ‘medical advice’”, Rita shares. “My doctor didn’t even have my blood work in front [of] her before suggesting surgical procedures to me.” The physicians Rita has met rarely ever look into the underlying causes of her weight gain; one of the effects of PCOS is that it’s harder to lose weight. “It was a maddening and dismissive experience,” Rita adds.
Despite the lack of awareness surrounding PCOS, there is proven power in online mobilisation. Just like Rita, women with PCOS have found out about the condition through the internet and through self-diagnosis. According to a survey conducted by Becker’s Hospital Review “44% of patients are [generally] symptom searching well before they make the first appointment.” While diagnosis and treatment of PCOS remains a challenge, we should support communities that continue to provide Black women with information, support and solace. Clusters of support groups continue to pop up all over social media like the PCOS Support Group which hosts over seventy thousand members. Some of these are area specific, such as the PCOS and Fertility support group in Kenya, Fertility and PCOS in Nigeria and PCOS S/A in South Africa. While there’s a long way to go in understanding and having transparency in this condition, spreading awareness of its prevalence is a solid start.