When Sasha Ottey was diagnosed with Polycystic Ovary Syndrome (recently renamed PMOS, or Polyendocrine Metabolic Ovarian Syndrome) in 2008, her doctor handed her a brief pamphlet and told her not to worry about her irregular cycles, just to “come back when she wanted to get pregnant.” Feeling that her concerns weren’t being taken seriously, Sasha began researching and soon discovered that she was one of millions around the world with PCOS/PMOS, a diagnosis that wasn’t even listed on the National Institute of Health's list of diseases and conditions. Refusing to accept the status quo, Sasha went on to found PCOS Challenge: The National Polycystic Ovary Syndrome Association, building a powerhouse of global support and legislative advocacy for the community.
Despite dedicating her life to supporting others through their diagnoses and the lifelong impacts of the condition, Sasha found her own family building journey to be a lonely one when she decided to try to grow her family in her late 30s. She opens up about the vulnerability of undergoing a major myomectomy to remove 10 fibroids in 2020, followed by an aggressive IVF protocol. Given just a 20% chance of success, Sasha beat the odds on her first attempt and is now the mother of a thriving four-year-old girl.
Through it all, PCOS Challenge has made enormous strides over the years, from successfully lobbying the NIH to list the condition to getting September unanimously designated as PCOS Awareness Month, which helped increase federal research funding by nearly 50%. Sasha also provides a candid look at the controversial renaming of the condition to PMOS and previews the upcoming PCOS/PMOS Awareness Symposium, taking place in Boston on September 19th. This full-day program, co-hosted by Mass General Brigham, brings together patients, supporters, healthcare professionals, researchers, leading PCOS/PMOS experts, and patient advocates for education and dialogue focused on improving care, treatment, research, and access. This year’s Symposium features specialized patient tracks including Spanish-language sessions and an adolescent-led policy lab designed to empower the next generation to use their voices and drive real change.
To connect with PCOS Challenge, visit https://pcoschallenge.org/ and register for the upcoming Symposium at https://pcoschallenge.org/symposium/boston/.
TOPICS COVERED IN THIS EPISODE:
PCOS, Polycystic Ovary Syndrome, PMOS, Polyendocrine Metabolic Ovarian Syndrome, preventative health care, reproductive health care, fibroids, uterine fibroids, myomectomy, IVF, maternal near miss, postpartum depression, mental health, body image, depression, anxiety, PCOS Challenge, Sasha Ottey, menstrual health, insulin resistance, metabolic issues, pre-diabetes, diabetes, cardiovascular disease, endometrial cancer, cancer risk, PCOS Advocacy, patient advocacy, patient-centered research, research funding, GLP-1s, advocacy, PCOS Awareness Month, PMOS Awareness Month, PCOS/PMOS Awareness Symposium
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