The 12-Year Diagnosis: Why Endometriosis Gets Missed
About this episode
Nicole Notar shares her 15-year journey to an endometriosis diagnosis and the impact it had on her life and advocacy work.
In this episode of GynoCurious, host Dr. Amy Novatt speaks with Nicole Notar, a patient-turned-entrepreneur who spent over 15 years undiagnosed before finally receiving excision surgery that revealed 73 endometriosis lesions throughout her body. Nicole shares her deeply personal journey — from symptoms beginning at age 9, to repeated dismissals by doctors, to a seven-hour surgery that changed her life — and explains how that experience drove her to found both a patient surgery fund (EndoExcisionForAll) and a clinical decision support startup (Vindicara) aimed at helping electronic health record systems flag endometriosis earlier. Dr. Amy and Nicole dive deep into the complexities of endometriosis diagnosis, including the wide range of symptoms that extend far beyond painful periods — from gastrointestinal issues and chronic UTIs to thoracic involvement and infertility. They discuss why diagnosis can take up to 12 years, how endometriosis is routinely mistaken for IBS, vulvodynia, or interstitial cystitis, and why the mismatch between symptom severity and physical findings makes it so difficult to catch. Nicole also breaks down the critical difference between ablation (surface…
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