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One in seven women in the U.S. suffers from chronic pelvic pain, a condition that is often questioned, misdiagnosed, or dismissed altogether, especially if the person hasn’t mustered the courage to discuss it. Elizabeth's* experience is a reflection of this struggle.
Overcoming vaginismus: Elizabeth's story
As a teenager, Elizabeth tried using tampons but found it impossible to insert them. “I was having panic attacks with heart palpitations, racing thoughts, and shaky limbs,” she recalls. “This was my first signal that something was different. I questioned my anatomy, wondering if I even had the ‘right parts,’ despite having a period.”
Her Google searches for tampon insertion pain led to suggestions of UTIs or STIs, which she knew were incorrect. She hoped the problem would resolve on its own and avoided consulting an OB/GYN or considering sex, trying tampons only intermittently, always without success.
In her early twenties, Elizabeth kept her condition private while her friends discussed their sex lives. She avoided dating and physical intimacy, fearing she would have to explain her pain to a partner. By her late twenties, she began to research pelvic floor muscle disorders and found they matched her symptoms.
When Elizabeth finally told her mother about her symptoms, her mother had never heard of vaginismus — a condition characterized by painful, involuntary muscle spasms around the vaginal muscles during penetration attempts. “That definitely made me keep things private for so long — I wasn’t confident anyone could help me,” she says.
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Elizabeth decided to consult a doctor after exploring online treatments and e-books. The OB/GYN, puzzled by Elizabeth’s lack of a pap smear at age 29, attempted one with a painful insertion of the speculum. The doctor suggested, “Have you tried relaxing and drinking wine?” Before the traumatizing appointment ended, the OB/GYN confirmed the vaginismus diagnosis and referred Elizabeth to a pelvic floor physical therapist.
After eight sessions, Elizabeth hesitated to return to an OB/GYN for another referral and took a break from healing. During this period, she discovered Vagina Rehab Doctor, a virtual pelvic floor physical therapy program founded by Dr. Janelle Frederick, DPT that reinvigorated her commitment to healing. She worked with Dr. Martina Mapa, DPT, using a combination of stretches, mental affirmations, and dilator exercises. Over six months, she completed the telehealth sessions, finally recovering from vaginismus and moving forward.
“Although penetrative sex was a major goal, it wasn’t the only reason for my treatment,” Elizabeth says. “I wanted to feel safe, relaxed, and in control, able to use any menstrual care I wanted, get pap tests and pelvic exams, and fully embrace my sexuality and sensuality without fear or shame.”
Vaginismus is treatable, but can be challenging to diagnose and address. Dr. Frederick highlights several reasons for its underdiagnosis and misdiagnosis. A lack of training among medical providers in pelvic floor muscle disorders and sexual dysfunction often leads OB/GYNs to suggest superficial solutions like drinking wine or using lidocaine instead of referring patients to specialists. Additionally, the condition is shrouded in shame and self-blame, discouraging open discussion and contributing to a lack of awareness.
Another factor is the insufficient language around vaginismus. People may not understand why they experience extreme fear or pain with penetration. Dr. Frederick emphasizes that vaginismus is not solely linked to trauma and that greater awareness is needed.
To recognize and advocate for oneself, it’s crucial to stop normalizing pain. Dr. Frederick stresses that women and people with vaginas should not settle for pain, unlike the standard expectations set for men. Validating one’s own experience and acknowledging that pain is not a normal part of sex is essential for seeking appropriate treatment.
Treatment for vaginismus typically involves pelvic floor physical therapy. In-clinic therapy includes assessments, stretches, and manual muscle tension release. Virtual care, however, empowers patients to perform self-healing exercises with clear instructions from therapists. Patients work on exercises with dilators and breathing techniques at home, with the therapist coaching them through the process.
Regardless of the treatment approach, the most crucial element is that patients feel their experiences are validated and that they have the agency to work through exercises. Healing from vaginismus is a collaborative effort, and knowing you have someone cheering you on can make all the difference.
*Last name redacted for privacy.
Mara Santilli is a journalist reporting on health and wellness and how social and political systems influence the well-being of certain groups, including but not limited to Black and brown communities, women, and the LGBTQ+ community. Her editorial work has appeared in publications such as Shape, Marie Claire, Cosmopolitan, Women’s Health, InStyle, Glamour, and more. Outside of reading and writing, she enjoys traveling (especially to Italy), singing, dancing, musical theatre, and playing guitar and piano.