Navigating PCOS: A Challenging Journey for Patients and Doctors Alike

Every day, Jeni Gutke, a 45-year-old resident of Joliet, Illinois, manages her polycystic ovary syndrome (PCOS) with a regimen of over 28 pills and injectable medications. Despite the extensive treatment, none of her medications are specifically designed for PCOS, a hormonal disorder often leading to a host of complications like diabetes, high cholesterol, and mental health issues.

The difficulty in treating PCOS stems from its complex nature and the lack of FDA-approved medications targeted specifically for this condition. Dr. Heather Huddleston of UCSF’s PCOS Clinic explains that PCOS symptoms vary greatly, making it challenging to find a one-size-fits-all treatment. Consequently, many women with PCOS resort to off-label medications, which can be difficult to navigate in terms of insurance coverage.

The story of Tallene Hacatoryan, a 31-year-old dietitian from Orange County, California, diagnosed with PCOS at 18, echoes this struggle. Hacatoryan now dedicates her work to guiding women with PCOS in managing their symptoms through diet and lifestyle changes. Despite international guidelines suggesting exercise and a healthy diet, there’s no conclusive evidence that any specific diet can alleviate PCOS symptoms.

PCOS research remains underfunded compared to other medical conditions. In 2024, the NIH earmarked only about $10 million for PCOS research. This lack of investment from both the government and private drugmakers has stunted the development of specialized treatments.

Nevertheless, there’s a glimmer of hope with small drug companies conducting research on potential PCOS treatments. Menlo Park-based May Health is developing a surgical procedure, while San Francisco’s Spruce Bio is trialing tildacerfont. However, these studies are in the early stages, and larger clinical trials depend on additional funding or partnerships.

The FDA’s recent engagement with advocacy groups like PCOS Challenge indicates an increasing push for better treatments, though no specific drug trials have been announced.

PCOS remains a largely misunderstood condition. It’s often misdiagnosed or undiagnosed, partly due to varying symptoms like irregular periods, acne, and excess hair growth. The condition is linked to hormonal imbalances, particularly higher levels of androgen hormones, yet current diagnostic criteria overlook related metabolic issues like insulin resistance.

For Candice Bolden, a 35-year-old Los Angeles resident, the path to her PCOS diagnosis was fraught with challenges. Despite multiple symptoms, her condition was overlooked by several doctors. The online PCOS community, however, provided her with the support and information she needed to manage her condition effectively.

Despite its complexities, those living with PCOS, like Bolden and Gutke, are finding solace and hope in online support networks. These platforms are reshaping the narrative around PCOS, emphasizing that it’s more than just a fertility issue and that effective management can lead to a fulfilling life.