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The 12-Year Diagnosis: Why Endometriosis Gets Missed

Episode 132: The 12-Year Diagnosis: Why Endometriosis Gets Missed

Undiagnosed for 15 years, 73 lesions, one seven-hour surgery. Nicole Notar on why endometriosis takes 12 years to catch and how to advocate for yourself

Show notes

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 burning) and excision (root removal), explaining why excision is the gold standard — and why insurance reimbursement structures make it nearly inaccessible for most women.

Nicole's message is one of persistence: the care exists, it's getting easier to find, and you cannot afford to stop advocating for yourself.

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Call 845-307-7446 or email comments@radiofreerhinecliff.org

Produced by Jennifer Hammoud and Matty Rosenberg @ Radio Free Rhiniecliff

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Nicole Notar

Nicole Notar

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