Stabbing, Shooting, Fire-Like Pain: One Woman's Experience With Vulvodynia

Female genital pain is often poorly understood and misdiagnosed. Learn more about the signs and symptoms of one painful condition that often causes painful intercourse.

Vulvodynia patient, Stephanie YeaerAfter years of painful intercourse, Stephanie Yeager was determined to find answers. Her persistence eventually led her to a doctor who properly diagnosed her with vulvodynia—a painful, but treatable nerve condition.

Stephanie Yeager’s wedding night in 2008 did not go as expected. “Intercourse was so excruciatingly painful for me that I started screaming and sobbing,” says Stephanie, now 35. “I mean stabbing, shooting, fire-like pain. Because I was sexually active in my teens I knew this was no case of ‘the first time it just hurts but then it gets better.’”

She tried to figure out exactly where the pain was coming from. “But I just had no idea. It was just pain everywhere down there,” she says.

Ms. Yeager visited doctors who misdiagnosed her as having a sexually transmitted disease and fungal infections. One practitioner just said, “We don’t know, there’s plenty of room in there.”

It took about 2 1/2 years and 5 different doctors for her to be diagnosed with vulvodynia (chronic pain in the vulvar region). For Ms. Yeager, the painful sensations of burning, stinging, and itching tend to only occur with intercourse, or when she inserts a tampon. The condition drastically affected her quality of life as she struggled with depression, anxiety, and near hopelessness. “I was wondering if there would ever be a solution to my situation that so intimately affected me and my husband,” she says.

The particular type of vulvodynia Stephanie has is called vulvar vestibulodynia, sometimes referred to as vestibulitis. It is thought to be generated by highly sensitized nerve endings that cause pain, usually at the back part of the vaginal opening. She was also diagnosed with vaginismus, involuntary tightening/spasms of the pelvic floor muscles. 

“If I’d have known to search online for words like vulvodynia, I would have. But I didn’t know that term even existed,” Ms. Yeager says. “I didn’t even really comprehend the fact that ‘pelvic’ and ‘pelvis’ refer to actual anatomy in that area of the body and that I could have been searching for terms like ‘pelvic pain.’ If you said ‘pelvis’ to me back then, I would have said, ‘yeah—the thing Elvis shook around!’”

Stephanie suspects that taking 10 years of dance classes and the way she carried her body—tight and sucked-in belly, breathing with her chest and clenched buttocks—over time contributed to an over-tensing and loss of function in her pelvic floor. “No one ever told me to let go of those tight body positions when I walked off the dance floor, I just thought it was good posture,” she says. 

She went through about 6 months of physical therapy with a specialized women’s health physical therapist in Chicago to address her pelvic floor dysfunction. (Editor's note: You can find a directory of physical therapists by location here—specify “pelvic pain"). She also takes a tricyclic antidepressant to calm the vestibular nerves. “The combination of these treatments brought my pain levels down significantly and I was able to experience low pain levels during sex,” she says. “However, I’ve found further healing in more natural methods including mindfulness meditation, an anti-inflammatory diet, and essential oils to support the nervous system and tissues. It’s really these methods that have allowed me to frequently experience no pain at all during sexual intercourse.” 

Spreading the Word about Pelvic Pain

Stephanie is using her own experience to help other women with pelvic pain. “Sexual, genital, and pelvic pain can be a long, frustrating road for women. I would encourage anyone with these conditions to know first of all that you’re not alone,” she says.The National Institutes of Health estimates that about 15% of women of childbearing age in the United States report having pelvic pain that lasts at least 6 months.

Dr. Robert EchenbergDr. Robert Echenberg says one reason so many women are misdiagnosed is the doctors they see are internists and OB/GYNs, not physicians trained in treating chronic pain. Ms. Yeager and Robert J. Echenberg, MD, founder of the Echenberg Institute for Pelvic and Sexual Pain in Bethlehem, Pennsylvania, have created a website that offers an educational guide to healing for women who experience painful sex or pain with genital contact.

Dr. Echenberg says Stephanie's experience of being misdiagnosed multiple times is common among young women—and men—with pelvic pain. One study estimated between 10% and 16% of men have chronic pelvic pain. Men with pelvic pain can have erectile pain, and in some cases, pain on ejaculation.

“When a person is not diagnosed appropriately and early, it can cause a sequence of events that cause more and more problems, to the point where it becomes more difficult to treat,” he notes.

Young women with pelvic pain conditions such as vulvodynia are often misdiagnosed as having vaginal yeast infections, urinary tract infections, or sexually transmitted diseases, Dr. Echenberg says. They often end up having many diagnostic tests and invasive procedures that are expensive, such as multiple diagnostic laparoscopies, MRIs, CT scans, and ultrasounds.  

One reason so many women are misdiagnosed is that the doctors they visit—OB/GYNs, urologists, or internists—are not trained in treating chronic pain. And if a woman ends up seeing a pain specialist after not being helped by her regular doctor, she may find the specialist isn’t familiar with treating pelvic pain, Dr. Echenberg says.

Vulvodynia Causes and Treatments

In addition to incorrect bracing of muscles and posture, vulvodynia can be caused by previous injuries to nerves from playing sports, such as gymnastics, soccer, basketball or even swimming, according to Dr. Echenberg. “If a young woman has been doing these activities since the age of 5 or 6, they develop injuries that can end up affecting the nerves and muscles leading to the pelvic area that can cause pain long after the injury has healed,” he says. “This can lead to neuropathy, or nerves firing off when they no longer need to, and this leads to pain directed toward the genital region.”

A doctor looking at the vulvar region in these women sees inflammation, and often treats it with antibiotics or antifungal agents. These treatments are ineffective in women whose pain is caused by vulvodynia instead of infections.

Pelvic Pain Treatment Team Stephanie surrounded with her Pain Down There treatment team. Left to right are: Alexandra Milspaw, PhD, LPC; Robert Echenberg, MD; Stephanie Yeager and Karen Liberi, MS, MPT, WCS Dr. Echenberg treats vulvodynia with a multidisciplinary approach that includes medications including drugs that treat nerve pain, muscle relaxants and antidepressants, as well as topical anti-inflammatory medications. Many of his patients find they are helped with massage and myofascial release therapy, which focuses on releasing muscular shortness and tightness. He also recommends dietary changes to reduce inflammation.

“My goal is to keep patients out of the ER and the operating room,” Dr. Echenberg says. “If the right diagnosis is made, and the treatment is less invasive and expensive, it’s a win-win.”

Ms. Yeager is crowdfunding to cover costs associated with turning paindownthere.com into an online, supported program for women. Click here for more information.

Updated on: 10/17/17
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