Cycles and Seasons

Episode 38: Living with Endometriosis

Jennifer Redmond

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0:00 | 42:46

In this episode Jennifer sits down with Nicole Tanionos, an 18-year-old high school senior, patient advocate and co-founder of The Endometriosis Alliance of Massachusetts (TEAM). Nicole shares her deeply personal journey living with endometriosis since middle school, and the remarkable advocacy work that has grown from it. Nicole's story is a reminder that the signs may be there long before a diagnosis, and that understanding your history can be a powerful part of navigating your path forward.

Key topics discussed: 

  • Endometriosis affects approximately 1 in 10 women of reproductive age and can take 4 to 11 years to diagnose, a reality Nicole knows firsthand.
  • Nicole's symptoms began in middle school and included migraines, severe bloating ("endo belly"), constipation, and increasingly painful, irregular periods - symptoms she initially thought were unrelated.
  • Nicole shares an all too common, long and frustrating road to diagnosis, including being dismissed by doctors, seeing nearly a dozen specialists, and learning to fight to be believed. 
  • She opens up about the emotional and psychological toll of living with a chronic, underdiagnosed illness, and why mental health is an inseparable part of the conversation. 
  • Nicole talks candidly about what life looks like after treatment, including the ongoing challenges and what it has meant for her future plans. 
  • Driven by her own experience, Nicole co-founded TEAM to advocate for better education, improved medical training, and legislation that could shorten the diagnostic journey for others. 
  • She shares a story about a chance conversation at a backyard gathering that may have changed a young woman's life, and explains why that kind of ripple effect keeps her going.
  • Nicole speaks honestly about the fears and uncertainties that come with an endometriosis diagnosis at a young age, including what it may mean for her future fertility.

Resources Mentioned:

Connect with The Endometriosis Alliance of Massachusetts:

Connect with Jennifer:

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Disclaimer: The Cycles and Seasons podcast is for general educational and informational purposes only and should not be taken as medical advice, diagnosis or treatment. Please consult your healthcare professional regarding any symptoms or medical problems you are experiencing.