If you’re reading this and you’re a woman of color, it’s quite possible that you’ve never thought twice about having PCOS. You might not even know what it is. And unfortunately, you’d be in the same boat with the majority of women. PCOS affects about 13% of women of reproductive age worldwide, and 75% of women who have PCOS do not receive a diagnosis for the disorder when visiting their doctor.
PCOS or Polycystic Ovarian Syndrome is a hormonal disorder that affects people with ovaries who are at the age to reproduce. PCOS prompts the ovaries to produce small cysts, or fluid-filled sacs, that lead to a vast range of symptoms, some of the most common symptoms including prolonged or irregular periods, a heavy flow during periods, weight gain, excess facial and body hair, and acne. Even though these symptoms may sound like just another case of ‘that time of the month’, living with an undiagnosed or untreated case of PCOS can lead to severe complications like diabetes, depression, anxiety, eating disorders, infertility, and even miscarriage.
Doctors haven’t been able to pinpoint specific causes of PCOS. Also, each case of PCOS can cause varying symptoms and leave different women with distinct PCOS experiences. With all of the lingering questions about this disorder, it’s easy for medical professionals to misunderstand symptoms or to give a misdiagnosis. And while one study determined that the prevalence of PCOS is not influenced by race or ethnicity, it’s worth taking a closer look at why more women of color have trouble with their PCOS diagnosis.
As working professionals, we may dread the health insurance options our jobs offer us. And even as an entrepreneur, figuring out independent healthcare is a grueling process. But many people don’t have access to health insurance to receive medical care in the first place. MedicalNewsToday shares that zip codes where residents are predominantly Black and Latinx (and mostly identify as low-income) are significantly more likely to lack access to healthcare and to experience a shortage of primary care physicians because of economic disparities. Without access to medical care, many women of color are kept in the dark about PCOS, other health issues, and ultimately, we are hindered from taking control of our overall well being.
Unfortunately, the disparities we see in healthcare for Black and Brown women continue once we’re inside the doctor’s office too. Doctors often approach conversations with patients with racial and gender bias. Most people who suffer from PCOS display the more common symptoms, like being “overweight” or having diabetes. Some people have more ‘silent’ symptoms such as insulin resistance. Instead of registering these indicators as symptoms, they’re often perceived as causes, leading doctors to completely miss the mark with diagnoses. And often, symptoms are blamed on bad habits or a bad diet.
Since PCOS only affects women or people with ovaries, and because it is frequently found in women of color, some people hypothesize that doctors don’t take the disorder seriously. The outdated stereotypes about women’s hypersensitivity and hysterical reactions, as well as the misconception that people of color, particularly Black people, have a higher threshold for pain, both contribute to the mistreatment and misdiagnosis of Black patients by their doctors. With these ideas in mind, doctors often dismiss these signs as an exaggeration and leave thousands of women at square one, with no questions answered and no relief.
Navigating the healthcare system with the double whammy (also pronounced by me as double blessing) identity of being a Black woman has forced me to familiarize myself with these kinds of experiences and to learn the best ways to get the most out of my doctor’s office visits.
I’ve always had a relatively heavy flow. I’m talking about from the first time I saw blood during my very first period. Running through three or four pads or tampons daily during my cycle has been the norm for me for forever. When I asked my mother if I should be concerned, she offered that she has always dealt with a heavy flow, and how even her sisters and nieces have mentioned their menstrual cycle horror stories with excessive blood flow, debilitating pain, and even trouble with conceiving children. After going through our family tree of period experiences, we chalked it all up to just another “thing that runs in the family”. It wasn’t until I began to have irregular periods that would come twice a month and then go missing every other month that I decided to do some investigating of my own.
I Googled the symptoms I noticed: heavy flow, irregular cycles, excessive facial hair growth, and weight gain. Google had immediately diagnosed me with PCOS, but when I read the long-term side effects, I decided that I needed to talk to a professional as soon as possible. After hours of scouring ZocDoc for a gynecologist with amazing reviews, I finally found one and booked the earliest appointment. At this point I was still very new to the finding-my-own-doctor game, and I didn’t necessarily have a great pool of gynecologists references or even someone to talk to that had been diagnosed with PCOS. But I figured taking my chances as a pioneer of PCOS would, at the very least, leave me with more information.
When the doctor asked me if I had any other concerns besides the info from my pap smear and general check up, I told her, I think I have PCOS, and I’d love to know if there’s anything we can do to figure it out today. The last emotion I expected from my doctor was shock. She paused, asked me about my symptoms and told me that I could get a sonogram if I really wanted to know. Now I’m sure that everything she asked after her initial pause was protocol. But it completely threw me off. Was I too young to be asking about PCOS? Did Google get it wrong? Was I naive for trusting them with my diagnosis? Do other patients make requests like this?
Once the sonogram was complete, the doctor confirmed the PCOS diagnosis: Yes, so you were right. You do have polycystic ovaries. But they are stable, so don’t worry about it. I don’t know if she was playing get-back, but I took a pause that was identical to her’s at the beginning of the visit. I was shocked that I did not receive any additional information or next steps, or even a bit of encouragement. Long story a little less long, I never saw this doctor again.
Although I was able to find a new gynecologist that embraced my questions, helped me gain a better understanding of my diagnosis, and offered some solutions to my symptoms, this initial visit and diagnosis will stay with me forever.
Since my own diagnosis, I’ve heard more jarring stories about Black women’s doctor-patient experience regarding PCOS and other reproductive health issues, and in addition to learning how to Google search more efficiently, I’ve held on to some lessons about listening to and trusting my body. If this experience or some part of this information resonates with you, try adopting these habits to advocate for yourself during a doctor’s visit and to take a more active role in your health journey:
- Listen to your body and take notes of what’s going on/your concerns
- Do your research
- Go doctor shopping and take your notes to the appointment
- Don’t settle for treatment you’re not comfortable with and file a complaint if you feel you’ve been mistreated
- Explore support systems of friends, family, or even celebrities/influencers who give testimonies about their journey with similar health concerns
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Kymberly Deane is a writer, content creator, and storyteller based in Brooklyn, New York. Her passion for continual self-improvement and exploring new things has led her to become a health and wellness zealot, with a particular love for sexual health and wellness. She uses her writing to share the gems she discovers throughout her journey.