Ending The Silence Surrounding Vulvovaginal and Pelvic Pain - Mary's Pence

Women's Stories  |  Grants

Ending The Silence Surrounding Vulvovaginal and Pelvic Pain

It all started with a podcast. When a couple of women with chronic vulvar, vaginal, and pelvic pain launched Tight Lipped, the idea was simple: to break the silence surrounding chronic vulvovaginal and pelvic pain by sharing their personal stories. Within weeks of releasing the pilot episode, it became clear that Tight Lipped was more than an audio project. Hundreds of messages from listeners poured in, and each of them said the same thing, “I thought I was the only one.”

Up to 1 in 4 women in the United States will develop chronic vulvovaginal pain at some point in their lifetime, yet these conditions are shrouded in stigma and secrecy. Chronic vulvovaginal and pelvic pain refers to a variety of conditions that cause vulvar burning, itching, and sharp pain; pain with penetration; UTI-like symptoms; urinary urgency, pain, and frequency; and pain with sitting and tight pants, among other symptoms.

Women with these conditions often develop depression and anxiety because of their pain and can face difficulty holding down a steady job, staying in school, or managing their relationships. Many avoid routine and necessary medical appointments because of the pain they experience and their medical providers’ lack of understanding.

A Collective Movement

These conditions impact people of all racial and ethnic backgrounds. Yet, BIPOC and low-income patients are often unable to access diagnosis or treatment and bear the greatest burdens of healthcare inequities. Those who have the privilege, financial means, and geographic access to seek medical treatment encounter medical providers who minimize the seriousness of their pain, discount their symptoms as “all in their head,” and lack the training to evaluate their condition correctly. Even though millions of American women are living with it, vulvovaginal pain is misunderstood, dismissed, or ignored by the medical community.

Tight Lipped is an advocacy organization by and for people with chronic vulvovaginal and pelvic pain, fighting for patients with these conditions to be diagnosed correctly, treated effectively, and given compassionate care. They are driven by a vision of a world in which people with vulvovaginal and pelvic pain can lead full lives, free of societal stigma and free to access necessary medical care. Tight Lipped uses a community organizing framework, bringing patients together to shift medical practice and social attitudes collectively.

Tight Lipped community members have shared some of the responses they’ve received from their gynecologists when they’ve disclosed their painful symptoms, including “sometimes it’ll just hurt and us women have to be okay with that,” “there is no reason that this exam should be painful. The only possible explanation is that you have repressed sexual trauma,” and “we can’t find anything so it’s probably a mental block.” One of the key underlying issues is that gynecologists are unfamiliar with these conditions and unprepared to care for their patients despite the prevalence of vulvovaginal and pelvic pain.

Grassroots Action

Tight Lipped launched its first grassroots campaign to address this issue this past year. Their campaign advocates for every Obstetrics and Gynecology (OB/GYN) residency program in the United States to provide training on common chronic vulvovaginal and pelvic pain conditions.

Tight Lipped aims to close the gaps in OB/GYN education so that every OB/GYN is prepared to provide compassionate care to their patients in pain. The campaign has taken off and already made major progress at Yale, Weill-Cornell, and USC’s OB/GYN residency programs. Tight Lipped’s volunteers successfully advocated for these programs to implement new lectures and curriculum to train residents on conditions like pelvic floor dysfunction, vulvodynia, lichen sclerosus, and other vulvovaginal pain conditions.

Tight Lipped has launched and established local patient-led chapters in New Haven, Connecticut, New York City, and Los Angeles. Each chapter fights for change in its city and collaborates with medical providers at local teaching hospitals. In the coming months, chapters will expand to four new cities and at least ten teaching hospitals.

Tight Lipped believes that organizing vulvovaginal and pelvic pain patients to speak up about their experiences and take collective action can change medical practice and social attitudes. They provide training and tools to enable their community members to take on leadership roles and demonstrate to their members that speaking out can be powerful and liberating rather than shameful and alienating. As one of Tight Lipped’s volunteers said, “I used to feel profound sadness every time I thought about my condition. I don’t feel that brokenness anymore. If anything, I feel anger to dismantle all these systems.”

Tight Lipped was recently featured in the LA Times. Read the article here.

“When I first read about Tight Lipped and that the organization was a Mary’s Pence grantee, my thoughts reflected on liberation for the oppressed. It took a brave, uncomfortable conversation to open a common ground of understanding among women who thought they were alone in their suffering. I rejoice with the founders of Tight Lipped and the growing Tight Lipped community as podcast episodes continue the discussion, the medical community receives education, and generous donors support its mission. I hope that women who are suffering from vulvovaginal pain are directed to the online community of this organization and will be empowered by what they find there.” A commentary by Sister Lakesha Church, Mary’s Pence Board Member.

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