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Nonprofit

Tight Lipped

Joined in May 2021

About Us

Tight Lipped is a grassroots storytelling and advocacy organization by and for people with chronic vulvovaginal and pelvic pain. We fight for people with these conditions to be diagnosed correctly, treated effectively, and given compassionate care. Chronic vulvovaginal and pelvic pain is under-researched, under-funded, and generally misunderstood by the healthcare system. People with these conditions live with vulvar burning, rawness, itching, and pain; urinary urgency; pain with penetration, or UTI-like symptoms without an infection present. While these conditions are shrouded in stigma, shame, and silence, they are remarkably common: up to one in four people with vaginas will experience chronic vulvovaginal pain in their lifetime.


Tight Lipped began with a podcast, which launched in May 2019 as a curated storytelling show featuring honest and compelling personal narratives alongside analysis from medical professionals and academics. We then expanded to facilitate community workshops, online programming, and published Opening Up, the Tight Lipped zine. Now, we are launching our community organizing work to change how healthcare systems treat people with these conditions.

Tight Lipped is a grassroots storytelling and advocacy organization by and for people with chronic vulvovaginal and pelvic pain. We fight for people with these conditions to be diagnosed correctly, treated effectively, and given…

Issue Areas Include

  • Disability
  • Health & Medicine
  • Reproductive Health/Rights
  • Women

Location & Contact

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