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Life, in pain: Part 5 — Vulvodynia

Life, in pain: Part 5 — Vulvodynia

Chronic pain has long baffled doctors and often left patients feeling helpless. But a mind-body approach is helping Chicago women reclaim their lives.
Jenni Prokopy
Contributing writer

In this six-part series, Jenni Prokopy of ChronicBabe.com joins Well Community in examining the six most common chronic pain conditions affecting women — chronic fatigue syndrome, endometriosis, fibromyalgia, vulvodynia, TMJ dysfunction and interstitial cystitis.

To read the introduction to the series and a personal perspective from the series author, click here.

Chronic pain conditions are often difficult for people to truly imagine and understand, unless they are experiencing it. Add to that a condition that’s uncomfortable for many to talk about publically, like vulvodynia — characterized mainly by pain, burning and irritation in the vulva, especially when trying to insert a tampon or during sexual intercourse — and you’ve got a disease that’s extremely misunderstood and stigmatized.

In fact, 6 million women in the U.S. have vulvodynia to a degree that can be disabling, yet it’s common for them to visit three doctors before getting a diagnosis, according to the National Vulvodynia Association.

Even then, many women have a hard time accepting their diagnosis because there is no tangible, conclusive test to prove it, says Dr. Kijana Seferovic, an internist at Swedish Covenant Hospital. As with many chronic pain conditions, determining the presence of vulvodynia is largely about ruling out other things that could be causing symptoms, such as vaginitis, dermatoses, yeast infection or urinary tract infections.

But accepting a diagnosis, Seferovic says, is crucial.

“When they accept that, it is, for us, a little bit easier to treat those patients, because we really can concentrate and find the best solution,” she says.

Reducing the pain

As with other chronic pain conditions, there is no cure for vulvodynia, so treatment focuses on reducing pain.

Dr. Shameem Abbasy, a urogynecologist at Swedish Covenant Hospital, says that in addition to prescribing medications that can block pain signals, she refers her patients to pelvic floor physical therapy — a form of therapy that is gaining ground in the field for treating vulvodynia, interstitial cystitis and many other pelvic conditions such as incontinence.

Heather Baker, a physical therapist at Swedish Covenant Hospital, sees numerous patients with vulvodynia. She says many patients come to her with “pain posture,” a stance they develop over time from clenching the muscles around a painful area, which can exacerbate symptoms.

“If they’re constantly holding it tight and irritable, that’s just going to perpetuate … the same process,” says Baker. “Teaching them what a relaxed pelvic floor muscle is and how reach that relaxed state” can help reduce pain and other symptoms.

Baker also helps patients strengthen the pelvic area: “If muscles tend to be very weak, then [patients] can get incontinence issues,” she says. “If you do gentle strengthening, it actually increases the nutrition to the muscles, helps flush out byproducts and just helps the muscle to be generally, I guess, happier and more healthy.”

Managing the emotional pain

Dr. Steven Kvaal, a clinical psychologist at Swedish Covenant Hospital, runs a psychological pain management group in addition to working with individual patients. He says patients with vulvodynia benefit from sharing their experiences with others in a group setting and connecting with others who share similar experiences.  

“Feeling understood, feeling listened to, or at least feeling that other people are taking them and their experience seriously” makes a big difference in a patient’s ability to cope with chronic pain, he says.

Research: What’s on the horizon for vulvodynia?

Six million women in the U.S. have vulvodynia, yet research grant funding from the National Institutes of Health in 2010 was only $3 million — that’s $.50 per person, according to a 2011 report by the Chronic Pain Research Alliance (CPRA).

Current research funded by the National Vulvodynia Association includes an investigation into the connection between ovarian hormones and vulvar pain thresholds and a study attempting to identify women with a particular form of vulvodynia who may be at risk for other pain syndromes.

Hazel’s story: Life with vulvodynia

Hazel, a 35-year-old Chicagoan living in Logan Square, experienced pain for many years when trying to use tampons, and had long since resigned herself to sanitary napkins.

She didn’t realize until she was well into her 20s, when she became seriously involved with a partner, that the pain she experienced during sex was part of having vulvodynia.

She has pursued physical therapy for pelvic pain symptoms, including exercises during treatment and at home. But the expense, coinciding with the dissolution of her serious relationship, caused her to stop treatment.

“It’s not a condition that causes me trouble all the time, but it does really get to me that it’s something people don’t know much about — and don’t know what to do about it,” she says.

If she had known years ago that her pain issues with tampons were related to a bigger issue, she might have addressed it earlier. And because chronic pain is a disease that worsens over time, Hazel knows now that things might have gone differently for her.

“If I had really been paying more attention to it years earlier … it’s hard to think what I could have done differently,” she says.

Editor’s Note: The patients we interviewed for this series asked that we protect their privacy by not sharing their names. We felt it was important to share these testimonials to help shed light on the day-to-day impact these conditions have on local women.

5 tips on searching for chronic illness support groups

  1. Look for a group that contains a mix of people from different backgrounds, including some who are near your age; this will help you gather different perspectives and find people you can relate to.
  2. Ask your health care providers if they know of any reputable groups in your area; their recommendations are often trustworthy.
  3. Check with local hospitals to see if they host support groups near you.
  4. Be prepared to use support groups as a supplement to the other support you may receive from friends, family and your health care team — not as your only source of support and encouragement.
  5. If you join a group and realize it’s not really a good fit (it’s too far to drive, or too many people are negative), quit it! Your time is precious. You’ll be able to find another.

Support group resources

More resources online