8: Power in Numbers

Show Notes

Today, we’re bringing you a story of change. One that gives a glimpse of what’s possible when patients, researchers, and policy makers come together to fight for a healthier, more hopeful future.

In 1994, Phyllis Mate led a small, dedicated group of women to found the National Vulvodynia Association, the NVA. Their mission was to be the central destination for the most up to date resources and research on vulvodynia. The problem? There wasn’t any medical information on the condition. On today’s episode we learn how a small group of vulvodynia patients fought for research and solutions to a problem they were taught not to talk about.

Full Disclosure: The National Vulvodynia Association is a sponsor of The Tight Lipped Podcast.

A note on gendered language in this episode: we want to be clear that not all women have vaginas, and that not all people with vaginas are women. In this episode, you'll hear the term "women" used to be consistent with clinical research and data available on this topic. However, vulvar pain can affect people of all genders and across the spectrum of gender identities.

What is Tight Lipped?

Tight Lipped is a storytelling podcast that makes public what is often thought of as “private pain.” We ask big questions about female chronic pain. We explore how gender, race, sexual orientation and class impact women and non-binary folks' experiences of healthcare and of their own bodies. Our show focuses on conditions that are extremely common (like vestibulodynia, vaginismus and endometriosis), yet carry with them a social stigma and often impact mental health, identity and intimate relationships.