ViewPoint | The Merry Go Round’ of PCOS Diagnoses and Disappointments. When does it stop?

by Brianna Dean

I got my first period when I was ten; by age 12 I spent several days a month hunched over, bleeding, and crying in pain. The gynecologist I went to told me I may have endometriosis, brushed off the pain as “normal” and recommended that I take birth control pills to regulate my period. I thought being on birth control at 12 was normal. It wasn’t until a few conversations with my friends, and the extreme concern expressed by my mother, that I became aware that it was in fact not normal. 

Looking back at that experience, I find myself not only angry at the lack of care I received from my provider but how I didn't know how to advocate for myself. Ten years later when I am talking to my new OB-GYN about my cycle and various physical symptoms I’ve been experiencing, she responded with a question “Do you think you have PCOS?” I didn’t know what that was. Polycystic Ovarian Syndrome occurs when ovaries form numerous cysts and overproduce androgens. I didn’t end up having PCOS, but I have met several Black Women who were battling this disease with little to no medical intervention from their OB-GYNs. It was eye-opening when actress/singer Keke Palmer posted on Instagram that she had done her own research and advocated for herself to receive a diagnosis of PCOS, which explained her adult acne and excessive facial hair. 

In order to receive the care, Black Women and other women of color have to learn how to advocate for ourselves.  

According to the National Institute of Health, approximately 5 million women have PCOS. Black Women are disproportionately affected by this disease, but half of PCOS cases in Black Women go undiagnosed for years. Blogger Ore Ogunbiyi wrote that it took her five appointments and nine months before she was diagnosed with PCOS. Of her doctors, Ore says, “They trivialized my pain”. 

A feeling Black Women alike know far too well. Research posits that Black Americans have been historically undertreated due to the false beliefs that Black People perceive pain differently than white people. This notion is harmful and contributes to the lack of accurate medical diagnoses in the Black community. 

My previous classmate, current doctoral student, and PCOS advocate Chanel Brown spoke to me about her journey to her PCOS diagnosis. Chanel recounts that her doctor never took her seriously, which is why it took her seven years to receive her diagnosis. Why does it take so long for Black Women to receive a PCOS diagnosis? 

Many women with PCOS are overweight, and weight bias may add to racial bias in medical settings. Overweight women are often told to lose weight, no matter whether weight actually affects the condition they have. 

Fatphobia is the reason Beatriz Kaye, a Latino PCOS advocate, went seven years without a PCOS diagnosis – her doctors told her that her period would regulate itself if she would just “lose weight”, and delayed doing any lab or imaging tests to check for PCOS.

This “invisible” disease may not appear to be physically impactful or disruptful, but the long-term health implications are. Women with PCOS may experience infertility. They also may have a higher rate of diabetes, heart disease, and sleep apnea, although it is difficult to separate the risks of obesity from the risks of PCOS.

Racism and fatphobia both compromise the care of Black women. For women of color, this healthcare system is a system of misdiagnoses, disappointments, and dismissals. Women of color deserve the right to be heard and respected by their medical doctors.

Brianna Dean is a Masters of Science candidate in Health and the Public Interest at Georgetown University.