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.
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FAQ
What are pelvic floor muscles?
The pelvic floor muscles are a group of muscles that run from the coccyx to the pubic bone. They are part of the core, helping to support our entire body as well as providing support for the bowel, bladder and uterus. These muscles help us maintain bowel and bladder control and are involved in sexual pleasure and orgasm. The technical name of the pelvic floor muscles is the Levator Ani muscle group. The pudendal nerve, the levator ani nerve, and branches from the S2 – S4 nerve roots innervate the pelvic floor muscles. They are under voluntary and autonomic control, which is a unique feature only they possess compared to other muscle groups.
What is pelvic floor physical therapy?
Pelvic floor physical therapy is a specialized area of physical therapy. Currently, physical therapists need advanced post-graduate education to be able to help people with pelvic floor dysfunction because pelvic floor disorders are not yet being taught in standard physical therapy curricula. The Pelvic Health and Rehabilitation Center provides extensive training for our staff because we recognize the limitations of physical therapy education in this unique area.
What happens at pelvic floor therapy?
During an evaluation for pelvic floor dysfunction the physical therapist will take a detailed history. Following the history the physical therapist will leave the room to allow the patient to change and drape themselves. The physical therapist will return to the room and using gloved hands will perform an external and internal manual assessment of the pelvic floor and girdle muscles. The physical therapist will once again leave the room and allow the patient to dress. Following the manual examination there may also be an examination of strength, motor control, and overall biomechanics and neuromuscular control. The physical therapist will then communicate the findings to the patient and together with their patient they establish an assessment, short term and long term goals and a treatment plan. Typically people with pelvic floor dysfunction are seen one time per week for one hour for varying amounts of time based on the severity and chronicity of the disease. A home exercise program will be established and the physical therapist will help coordinate other providers on the treatment team. Typically patients are seen for 3 months to a year.
What is pudendal neuralgia and how is it treated?
Pudendal Neuralgia is a clinical diagnosis that means pain in the sensory distribution of the pudendal nerve. The pudendal nerve is a mixed nerve that exits the S2 – S4 sacral nerve roots, we have a right and left pudendal nerve and each side has three main trunks: the dorsal branch, the perineal branch, and the inferior rectal branch. The branches supply sensation to the clitoris/penis, labia/scrotum, perineum, anus, the distal ⅓ of the urethra and rectum, and the vulva and vestibule. The nerve branches also control the pelvic floor muscles. The pudendal nerve follows a tortuous path through the pelvic floor and girdle, leaving it vulnerable to compression and tension injuries at various points along its path.
Pudendal Neuralgia occurs when the nerve is unable to slide, glide and move normally and as a result, people experience pain in some or all of the above-mentioned areas. Pelvic floor physical therapy plays a crucial role in identifying the mechanical impairments that are affecting the nerve. The physical therapy treatment plan is designed to restore normal neural function. Patients with pudendal neuralgia require pelvic floor physical therapy and may also benefit from medical management that includes pharmaceuticals and procedures such as pudendal nerve blocks or botox injections.
What is interstitial cystitis and how is it treated?
Interstitial Cystitis is a clinical diagnosis characterized by irritative bladder symptoms such as urinary urgency, frequency, and hesitancy in the absence of infection. Research has shown the majority of patients who meet the clinical definition have pelvic floor dysfunction and myalgia. Therefore, the American Urologic Association recommends pelvic floor physical therapy as first-line treatment for Interstitial Cystitis. Patients will benefit from pelvic floor physical therapy and may also benefit from pharmacologic management or medical procedures such as bladder instillations.
Who is the Pelvic Health and Rehabilitation Team?
The Pelvic Health and Rehabilitation Center was founded by Elizabeth Akincilar and Stephanie Prendergast in 2006, they have been treating people with pelvic floor disorders since 2001. They were trained and mentored by a medical doctor and quickly became experts in treating pelvic floor disorders. They began creating courses and sharing their knowledge around the world. They expanded to 11 locations in the United States and developed a residency style training program for their employees with ongoing weekly mentoring. The physical therapists who work at PHRC have undergone more training than the majority of pelvic floor physical therapists and as a result offer efficient and high quality care.
How many years of experience do we have?
Stephanie and Liz have 24 years of experience and help each and every team member become an expert in the field through their training and mentoring program.
Why PHRC versus anyone else?
PHRC is unique because of the specific focus on pelvic floor disorders and the leadership at our company. We are constantly lecturing, teaching, and staying ahead of the curve with our connections to medical experts and emerging experts. As a result, we are able to efficiently and effectively help our patients restore their pelvic health.
Do we treat men for pelvic floor therapy?
The Pelvic Health and Rehabilitation Center is unique in that the Cofounders have always treated people of all genders and therefore have trained the team members and staff the same way. Many pelvic floor physical therapists focus solely on people with vulvas, this is not the case here.
Do I need pelvic floor therapy forever?
The majority of people with pelvic floor dysfunction will undergo pelvic floor physical therapy for a set amount of time based on their goals. Every 6 -8 weeks goals will be re-established based on the physical improvements and remaining physical impairments. Most patients will achieve their goals in 3 – 6 months. If there are complicating medical or untreated comorbidities some patients will be in therapy longer.