When I was diagnosed with PCOS nearly a decade ago, there were far fewer resources available. The Polycystic Ovarian Syndrome Association (PCOSA) was founded by Christine DeZarn in 1997. The first significant book for patients, “PCOS: The Hidden Epidemic” (Samuel S. Thatcher, M.D., Ph.D.), wasn’t published until 2000. Just a decade ago there was less awareness, even among medical professionals working in women’s health. I feel incredibly lucky that I was diagnosed during a time when information and support groups were just coming into existence. Even so, it’s been a years-long journey of gathering accurate information and the tools I needed to find the path back to health and fertility.
If you’re concerned about possible symptoms of PCOS, I recommend reading some reliable resources. Angela Grassi is the founder of The PCOS Nutrition Center and is a registered dietitian who has PCOS. She co-authored “The PCOS Workbook,” which is a fabulous resource for the newly diagnosed seeking accurate information. It contains a lab tracking form, which is an invaluable tool for becoming familiar with what blood work needs to be done to help diagnose or monitor PCOS. “A Patient’s Guide to PCOS” (Walter Futterweit, MD) includes a PCOS quiz and provides an in-depth review of symptoms and available treatments. For information specific to teens, read Grassi’s article “Recognize Polycystic Ovary Syndrome in Teens — The Importance of Early Detection and Treatment.”
After becoming familiar with PCOS symptoms and testing, keep a menstrual cycle record (making note of both past and present patterns), and jot down any other symptoms. It’s important to remember that oral contraceptives, while often used to treat PCOS, also mask the symptoms. For instance, they may regulate previously irregular menses, and clear up acne and hirsutism. Experience has taught me that it pays to be informed, not only to be accurately evaluated for PCOS, but because even once diagnosed, women with PCOS often have to advocate for themselves by proactively asking for the appropriate referrals and insisting on the best care. If you don’t feel like your primary care provider or OB/GYN is paying attention, trust your instincts. Ask for a referral to see an endocrinologist (I currently see one who has a clinical interest in PCOS) or reproductive endocrinologist. Prior to conceiving both of my daughters, I saw reproductive endocrinologists, who usually specialize in treating infertility, and stayed under their care until about the 10th week of pregnancy before being transferred to an OB for my remaining prenatal care.
The primary treatment for PCOS is diet and exercise. Over the years I’ve worked with dietitians, the first who told me I needed to eat a strict low-carb diet, like The Atkins’ Diet, which was common advice regarding PCOS nutrition at the time. I was even advised not to eat foods like whole-grain brown rice and beans, because they’re “too high in carbs.” Fortunately, this is now considered too extreme, and the fad of categorizing all carbs as bad has faded. Women with PCOS generally need to follow a moderately low-glycemic diet, similar to what it is recommended for type-2 diabetes. Exercise is also key to improving insulin sensitivity, as well as the high cholesterol and high blood pressure that often accompany PCOS.
My philosophy has evolved to focus on eating to create health and treating food as medicine. The mainstay of my diet is whole foods like complex carbs, fresh fruit and whole grains, paired with lean protein, and plenty of veggies. I haven’t made anything completely off limits, but restrict sugar and refined carbs as well as saturated fat and sodium intake. PCOS Diva is a fabulous resource for PCOS-friendly eating. Amy Medling provides recipes and menu plans, as well as supplement tips, and her Facebook community provides a wealth of practical and emotional support.
As previously mentioned, oral contraceptives are often prescribed for PCOS in order to address hormonal imbalances, hirsutism, acne, and irregular cycles. However, they do not treat the underlying insulin resistance and can delay an accurate diagnosis. Metformin has also become central to treating PCOS. Typically used to treat type-2 diabetes, it improves insulin sensitivity, thereby improving the hormonal imbalances associated with PCOS. (For an explanation of the link between insulin resistance and PCOS see here.) Metformin aids in regulating menstrual cycles, improves chances of ovulation, and reduces the risk of miscarriage after conception. It can also help reduce the risk of developing type-2 diabetes, as well as lower cholesterol levels and reduce the long-term risk of heart disease.
There are several more groups working to raise awareness and provide support and education on managing PCOS. Power Up for PCOS is developing a directory of medical professionals who treat PCOS, and forming support groups all over the U.S. The founder and executive director of PCOS Challenge, Sasha Ottey, created a radio show, which features interviews with various experts, as well as a TV series.
I’m so grateful for the newly thriving PCOS communities available on the web and via social networking. It can be incredibly confusing when newly diagnosed, and even after 10 years, I benefit daily from the emotional support, shared information and up-to-date research they provide, as well as access to experts and other women who are living with PCOS, just like me. PCOS is a lifelong condition, but we can help one another through every stage of life, every step of the way.