After a doctor didn’t take my PCOS seriously, I started an advocacy organization to shine a light on this common condition.
When I was 28 years old, I missed a period. I knew something was wrong because I wasn’t pregnant, and I’d never missed a period before. I rushed to make an appointment with an OB-GYN who, after taking my medical history, running some tests, and doing an ultrasound, diagnosed me with polycystic ovary syndrome (PCOS).
She told me not to worry about not having a period, joking that there were many women who’d love to be in my shoes. I felt utterly dismissed — missing my period was what raised an alarm for me in the first place.
The OB-GYN referred me to an endocrinologist who told me to lose weight and come back in six months. Again, I was dismissed. Only after doing my own research on PCOS did I learn how serious — and how prevalent — it is.
In fact, PCOS is the most common hormonal disorder among people who are biologically female, affecting one in 10 women of reproductive age in the United States. And this number doesn’t include undiagnosed cases, of which there are likely many because women and their healthcare providers might not recognize PCOS symptoms.
PCOS causes irregular ovulation, which is a primary cause of female infertility, and therefore, one of the most devastating symptoms of the condition.
But the complexity of reproductive health isn’t taught in school, so many people don’t understand the link between menstruation, ovulation and fertility.
Many women aren’t instructed about what an irregular menstrual cycle is or how to identify symptoms like heavy bleeding. This lack of education is a major barrier to understanding our own bodies.
Racial and ethnic disparities are another big issue when it comes to reproductive care. In my experience as an advocate for people with PCOS, women of color and those who have immigrated to the United States are less likely to speak about infertility in their communities. They’re also less likely to have access to fertility experts — or insurance coverage.
After the way I was treated when I was diagnosed with PCOS in 2008, it felt like a disservice and an injustice not to have more options for educating PCOS patients as well as healthcare providers. So, that same year, I founded PCOS Challenge: The National Polycystic Ovary Syndrome Association, a patient support and advocacy organization for women and girls with PCOS. We now have more than 60,000 members.
I work to help people recognize that menstrual health is directly connected to overall health, both physical and mental. Menstruation is actually considered to be the body’s fifth vital sign in some circles. Removing the stigma around this natural process is an important first step toward getting more people to understand it.
As long as doctors and society continue to dismiss women’s reproductive health concerns, I’ll be fighting to make sure they’re heard.