tightlipped

Tight Lipped: You’re Not Alone; Patient-Led Communities

In Female Pelvic Pain by pelv_adminLeave a Comment

By Tight Lipped, guest blogger.

 

“My doctor in college told me that my partner simply ‘didn’t know what he was doing’, and that’s why it felt like his penis was hitting a wall inside me.”

“When I saw a doctor for my vaginal pain, he told me to use a cucumber to stretch out my vagina.” 

“So many doctors told me to just ‘have a glass of wine’ and try to relax. It doesn’t work.”

“One doctor insisted that I was repressing sexual trauma. Another thought it was all about my anxiety and told me I needed to see a therapist to get anti-anxiety medication. Neither of them believed me or my experiences.”

 

Have you ever gone to a doctor to receive care for vulvar, vaginal, or pelvic pain, and received a response like this?

 

Vulvovaginal and pelvic pain are  generally seen as “private pain” ─ pain to be dealt with on your own, suffering in silence. When you have pain with urination, sitting, tight pants,  or sex, it can feel isolating and overwhelming, like a part of you is broken.

 

You are not broken, and you are not alone. And you deserve better, scientifically accurate, compassionate care from medical professionals.

When I was in middle school, I knew that tampons were not for me, even though my soccer teammates seemed to use them without difficulty. In college, throughout my first sexual experiences, I found that penetration was extremely painful or just outright impossible. I never had a word for what I was experiencing, and simply thought I was defective. 

Fast forward to October 2022: a group of five complete strangers came together over the dinner table to talk about the various ways we’ve experienced vulvovaginal pain (like vaginismus, as I described above), and how it has impacted our lives. We left three hours later comrades and friends, hugging out our goodbyes in tears. Once we realized our deeply personal ordeals were not just something that made us “defective”, but an experience shared by millions of people, we breathed a collective sigh of relief. Having other people who can relate to this kind of intimate pain makes for deep, long-lasting connections.

Connections like this are possible thanks to patient communities like Tight Lipped, an advocacy organization by and for people with chronic vulvovaginal and pelvic pain. Tight Lipped launched in May 2019 as a curated storytelling podcast providing a platform for public conversation about conditions that are shrouded in stigma, shame, and silence. Within weeks of releasing the pilot episode, it became clear that Tight Lipped was more than an audio project. Messages from listeners poured in sharing that this was the first time they felt empowered to talk about their symptoms.

A small team of volunteers came together to facilitate community workshops, create and distribute our zine Opening Up, and bring patients together to fight for change. Now, Tight Lipped has expanded to become a grassroots advocacy organization, working for better care for women and people with these conditions. We are driven by a shared 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.

 

Why do we do this? Because there are millions of people with stories just like mine. Vulvovaginal complaints account for 10% of all gynecology office visits. Chronic vulvovaginal and pelvic pain conditions affect 10-28% of people with vaginas in the United States, and these conditions can severely impact quality of life — including daily functioning, sexual and reproductive health, mental health, and the ability to maintain bodily autonomy in intimate relationships and healthcare settings. Yet most patients struggle to access adequate medical care for these conditions. Each year, 10% of all office visits to OB/GYNs concern chronic pelvic pain, and 10 million visits are for vulvovaginal problems. Yet, over a third of patients went to more than 15 doctor appointments before getting a diagnosis for their vulvovaginal pain.

Tight Lipped advocates for OB/GYN residency programs across the country to provide comprehensive training on the diagnosis and management of common chronic vulvovaginal and pelvic pain conditions. If all OB/GYNs were equipped to effectively manage these conditions, access to care for patients would dramatically increase. Together, we’re working with medical providers and OB/GYN residents programs to make diagnosis and management of common vulvovaginal and pelvic pain conditions a standard part of OB/GYN training. Our campaign is a collaboration between medical experts, including our Medical Advisory Board, and patients whose personal experiences have motivated them to advocate for the care they need and deserve.

Whether you’re a patient, medical provider, or supporter of our community, we need your help!

Here in Los Angeles, we recently began organizing a local chapter of Tight Lipped. We’ve connected with doctors and medical professionals who specialize in pelvic floor physical therapy, and we’ve connected them with local patients with pelvic pain. We’ve hosted social gatherings, like the dinner I mentioned above, to give a space where folks can connect with others dealing with vulvovaginal pain. And we are still growing every day: in February of 2023, we started putting up flyers around the city of Los Angeles to raise awareness and provide information about our group. Just recently, in March 2023, we have begun organizing to change residency education at a prominent local Southern California school.

Join us! If you are in the Los Angeles area and you experience vulvar, vaginal, and pelvic pain, we’d love to hear from you, connect with you, and hear your ideas. You can contact the LA chapter of Tight Lipped by visiting our website.

 

“It’s really unbelievable to me how much more comfortable I feel [after joining Tight Lipped] having a body that experiences pelvic pain. I feel like I am literally shedding layers of shame and blame.” 

 

 

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Are you unable to come see us in person in the Bay Area, Southern California or New England?  We offer virtual physical therapy appointments too!

Virtual sessions are available with PHRC pelvic floor physical therapists via our video platform, Zoom, or via phone. For more information and to schedule, please visit our digital healthcare page.

In addition to virtual consultation with our physical therapists, we also offer integrative health services with Jandra Mueller, DPT, MS. Jandra is a pelvic floor physical therapist who also has her Master’s degree in Integrative Health and Nutrition. She offers services such as hormone testing via the DUTCH test, comprehensive stool testing for gastrointestinal health concerns, and integrative health coaching and meal planning. For more information about her services and to schedule, please visit our Integrative Health website page

Melissa Patrick is a certified yoga instructor and meditation teacher and is also available virtually to help, for more information please visit our therapeutic yoga page

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