We are a movement changing how healthcare systems treat people with chronic vulvovaginal and pelvic pain.
Collage by With Care Creative from artwork by Amanda Forastieri, Katy McFadden, Sara Edwards, and Charlotte Milbauer
2019
Tight Lipped began as a curated storytelling podcast, creating a platform for a public conversation about “private” pain. Our episodes explored how the history of hysteria, medical research, and social pressure and norms have kept people silent about vulvovaginal and pelvic pain for too long.
Within weeks of releasing the pilot episode, it became clear that Tight Lipped was more than an audio project.
We were flooded with hundreds of messages from listeners and each of them said the same thing:
“I thought I was the only one.”
When everyone is facing the same obstacles in their struggle to get care, it's not just a personal problem anymore, or even a problem of a few “bad apple” doctors who are dismissing their patients’ pain.
Instead, we saw a medical system that was unprepared to treat women, non-binary, and transgender individuals with common conditions, like vulvodynia, pelvic floor dysfunction, lichen sclerosus, and others.
2020–2022
A small team of volunteers, each with a personal history of pain, came together to facilitate community workshops and bring patients into our fight for change. We organized community-building programs for patients joining our community.
We also published our zine, “Opening Up,” to break the stigma, shame, and silence around vulvovaginal and pelvic pain conditions. It includes art, poetry, and prose compiled from more than fifty contributors who submitted their stories about living with vulvar burning, rawness, itching, and pain; pain with penetration, or UTI-like symptoms.
2023–2025
We launched our first grassroots organizing campaign. This came after years of using storytelling to build our community, surveying patients to better understand the core issues, and working with a team of volunteers to develop a community organizing strategy.
Our patient-led campaign advocates for every Obstetrics and Gynecology (OB/GYN) residency program in the United States to provide training on common vulvovaginal and pelvic pain conditions. Through this campaign, Tight Lipped aims to address the current gaps in OB/GYN education so that every OB/GYN is prepared to provide effective and compassionate care to their patients in pain.
Present
Tight Lipped has established local chapters led by patient-volunteers in Los Angeles, New York City, Washington DC, and Connecticut. Tight Lipped trains and supports these leaders to develop their leadership skills and political power.
Through this transformative work, patients with vulvovaginal and pelvic pain are joining forces to raise their voices for long-overdue change.
“I used to feel this really profound sadness every time I thought about my condition. I don't feel that brokenness anymore, if anything I feel this anger to dismantle all these systems.”
— Sophie Krueger