Sasha Ottey, executive director of PCOS Challenge: The National Polycystic Ovary Syndrome Association, wants other girls and women to have an easier time getting a diagnosis than she did.
My story is similar to a lot of women with PCOS. In retrospect, I can identify signs from childhood. I’ve never been the thin girl. I secretly struggled with anxiety from adolescence, and I started to notice hair loss in my late teens. I remember crying when I saw more and more of my hair in my comb and the shower. I consulted a dermatologist who suggested that the chemicals I was using at the time–relaxers–were to blame. I stopped using relaxers, but the hair loss was still there.
I saw multiple specialists over a decade for various issues, whether it was my hair, skin, or weight. I gradually transitioned from being classified as overweight to obese, according to BMI charts, despite being relatively active.
One doctor “counseled” me about my weight at each visit. Some family members did not hesitate to mention my weight whenever they saw me. I took the “eat less, exercise more” rhetoric to heart. With the help of commercial weight-loss programs, I started practicing disordered eating behaviors such as over-exercising and extreme calorie restriction.
I was put on oral contraceptives during my teens, so I didn’t start having noticeable issues with my periods until shortly after I stopped taking them. (Oral contraceptives have a negative impact on my mood, so I have not taken them since realizing how they affected my mental wellness.) One month, my period suddenly stopped. I went to my gynecologist, who assessed me for PCOS. She did a transvaginal ultrasound, which revealed the classic multiple tiny immature follicles around my ovaries. She also did some lab tests and then diagnosed me with PCOS. I was in my late 20s.
Unfortunately, because I wasn’t seeking pregnancy, I felt that my concerns were dismissed. She prescribed more oral contraceptives and told me not to stress about missing periods. She said I should come back to see her when I wanted to conceive and referred me to an endocrinologist. The endocrinologist told me to lose weight and come back to see him in six months.
I could have been diagnosed much sooner if healthcare providers were able to more easily collaborate with each other on their patients’ cases or if I had known about PCOS sooner to ask my doctors about it. The things that were most obvious in retrospect were my weight gain, hair loss, and irregular periods. I had sought help, but from separate physicians. When I spoke to a dermatologist about my acne or about losing my hair, I don’t remember being asked about my menstrual cycles, nor did I know to bring this up.
After my diagnosis, I was left to my own devices to figure out how to improve my health. I was being told to lose weight, but my health insurance denied my request to see a nutritionist or dietitian because I wasn’t diabetic. It was clear that I needed to take charge of my health and create my own support system, as well as support others in finding answers of their own. I knew there were other women and girls like me who also needed education, support, and better treatment options. I started PCOS Challenge: The National Polycystic Ovary Syndrome Association.
I looked for PCOS research studies that would potentially help me find treatment. I found one at Virginia Commonwealth University that focused on nutrition and weight management in women with PCOS, which was exactly what I was looking for at that time. I made the two-hour drive to VCU from Maryland every few weeks to be part of this program, where I had access to a registered dietitian with PCOS knowledge.
As part of the study, I had an oral glucose tolerance test, which showed that I had insulin resistance. Women with PCOS who are overweight or obese often have insulin resistance, but many never have access to this test. Nutrition consultants helped me figure out a way of eating–not a diet–that fit for me. I started exercising, not over-exercising. I increased my protein, fiber, and vegetable intake. I started doing feel-good forms of exercise for me, like yoga and walking more, which helped me lower my stress levels and feel more centered and in control. To me, the whole experience was about learning about my health and ways to feel healthier.
I feel best when I stick to eating healthfully, incorporating exercise, and, importantly, managing my stress. My periods are now relatively normal. I have also used other therapies such as acupuncture and taken medications such as metformin.
Sometimes, handling the stress can be challenging. I was also diagnosed with systemic lupus, an autoimmune disorder. Managing multiple chronic disorders in one body requires patience, resilience, determination, and lots of self care.
My passion is increasing awareness about PCOS. I have a history of diabetes, hypertension, and heart disease on both sides of my family. PCOS puts me at elevated risk for all of these and more. The lean members of my family also battle these diseases, which is why I know that education on cardiovascular disease and diabetes prevention should not be limited to people in larger bodies.
The long-term consequences of PCOS include not only fertility issues, but also metabolic, mental health, and skin issues–and more. This is why I will continue to fight to increase awareness, expand the focus of research, and improve outcomes for women and girls with polycystic ovary syndrome.
If you have a story about being misdiagnosed, email us at email@example.com