Vulvodynia Sufferers Find Hope

Written by on November 1, 2011 in Research & Technology - No comments

By Elizabeth Witherspoon

Pain is bad enough, but when a doctor cannot find the cause, nor provide a known treatment that will cure it, sufferers can start to lose hope. Add to that the difficulty of the pain being in a private part of the body—not in a place one is comfortable speaking freely about—and the patient suffers in isolation. This combination of pain and hyper-vigilance to when the next pang will come, coupled with isolation and sexual difficulties, can lead to emotional and psychological issues too.

Vulvodynia is just such a pain. It is localized or widespread pain in a woman’s vulvar region, the genital area around the opening to her vagina. It can be chronic or intermittent.  Its diagnosis comes after physicians rule out cancer or other causes—that is, when there is no other explanation. According to the National Institutes of Health, as many as 18 percent women will at some point experience vulvodynia. Yet the condition has remained so obscure, NIH launched a national awareness campaign about it in 2007. In fact, the experts are not in complete agreement on use of the term vulvodynia itself, which underscores how uncharted the territory is for research and effective treatment.

The cause of vulvodynia is not well understood. Researchers speculate about injury to nerves, genetic susceptibility to widespread pain, elevated levels of inflammatory substances in the vulvar tissue, or an abnormal response to environmental factors, such as infection or trauma. The National Vulvodynia Association says vulvodynia is not simply a gynecological condition, and that many experts favor a multi-disciplinary approach to its management. This may include treatment by a gynecologist, dermatologist, neurologist, pain management specialist, urogynecologist, or even a physical therapist. Because the condition typically affects a woman’s sexual relationships and emotional well-being, she may be referred to a psychologist or a couples or sex therapist as well. Ultimately, since the cause remains unknown, treatment, or the combination of treatments, focuses on alleviating symptoms.

Denniz Zolnoun, M.D., M.P.H.

Denniz Zolnoun, M.D., M.P.H., an OB/GYN at University of North Carolina at Chapel Hill School of Medicine and director of the vulvar clinic, has spent over a decade researching causes and treatments for vulvodynia. She recently won a national award from the Society for Women’s Health Research for her work in gynecological pain. Her pioneering spirit seems to come naturally. Zolnoun, of Turkish and Iranian descent, came to the United States at age 16, learned English and eventually got herself into medical school.

Her work has included “reverse engineering” as patients describe symptoms to trace nerve pathways back to the source of the pain and to locate the targets for treatment. She looks for answers among the work of nationally known researchers in areas of medicine where pain is better understood: dentistry, neurology, gastroenterology, orthopedics. She is currently working on a large research project at UNC with researchers specializing in Complex Persistent Pain Conditions (CPPCs), such as fibromyalgia, episodic migraine, vulvar pain, irritable bowel syndrome and temporomandibular joint (TMJ) disorders. Their hypothesis is that multiple genetic factors, when coupled with environmental exposures (e.g. injury, infections, physical and psychological stress), increase a patient’s susceptibility to CPPCs by enhancing pain sensitivity and/or increasing psychological distress.

Her multidisciplinary work with some of these same experts in pain research grows out of prior work during a training program, called the Bridging Interdisciplinary Research Careers in Women’s Health (BIRCWH) Scholars at UNC. It is administered by the North Carolina Translational and Clinical Sciences (NC TraCS) Institute, UNC’s NIH Clinical and Translational Science Awards (CTSA), which is part of a national consortium created to more quickly turn discoveries into practical solutions for patients.

“When I began, there was simply no construct in gynecology for what patients were experiencing, because it had been marginalized as a cognitive disorder,” said Zolnoun. “We never tell someone who has a hyper-thyroid problem it is all in their head. It is a chemical abnormality with different manifestations in different patients … pain is pain.”

A big part of her research, clinical work and mentoring of other clinician-researchers is closing the knowledge gap about differences between men and women with regard to pain perception, as well as their anatomical differences.

“One of the nerves involved wasn’t even mapped out for women in the textbooks when I was in medical school,” said Zolnoun. In fact, it was these gaps in knowledge about the health needs of women that led her into gynecology, where she thought she could make a difference by moving the science forward with research.

Two patients’ stories

Often, women experiencing vulvar pain have endured silently for years. Layering on top of that silent suffering can be shame and isolation, along with frustration and despair.

Noreen Jurek, a marketing professional in Cary, N.C., who suffered a nerve injury in a prior routine pelvic surgery, has described the “searing pain” and the misery of sitting for long plane rides for business travel. Coupled with the endurance it took to maintain a “happy face” at work, despite her discomfort, she said it was extremely difficult to concentrate.

“It felt like a fish hook there all the time and every move made it dig in a different way,” said Jurek.

Sandy Ballard, of Raleigh, N.C., spoke of almost two decades of chronic pain that felt “like a hot poker in the vaginal area.” She was diagnosed in her 20s with a yeast infection by her family physician and said the pain never went away.

To add insult to injury, she sought help from a series of physicians who in their ignorance about this issue suggested it must all be in her head, that she was “super sensitive” or asked whether she was ever molested. She has found relief from the constant pain with only occasional flare ups from a combination of medications, including dextromethorphan (an ingredient in cough syrup), Lyrica® (a fibromyalgia drug), Mirapex® (used to treat restless leg syndrome), Wellbutrin® (an antidepressant) and others.

These women and others also have sought help in Zolnoun’s monthly pain clinic, where she maps the type and location of pain and other sensations they are having. Then through her reverse engineering she identifies which nerves are involved and administers nerve blocks via injection for relief. Patients differ in how long the relief lasts or how many injections are needed, but, as Zolnoun explains, it is a process of quieting the nerve over time and is unique to the individual. In Jurek’s case, the nerve mapping revealed involvement of nerves running down her leg. She said it was very mysterious to her, but “it made perfect sense when Dr. Zolnoun explained it.”

“My goal is to be pain free,” said Ballard, who says she is now having pain-free pleasurable sex for the first time at age 45. “I am not giving up. Dr. Zolnoun has given me relief and given me hope, more than anything else.”

Jurek added: “There’s no describing the moment I finally felt that someone understood the real physiological issue and was willing to administer targeted treatment. As Dr. Zolnoun instinctively zeroed in on the precise source of my pain, I was never so elated to have someone hurt me! I thought, ‘She knows. She knows what hurts, and she knows why.’ If she knew that within five minutes, I knew she could guide me to some degree of relief. She is not just knowledgeable; she’s passionate and tenacious in a way I imagine our suffragette sisters were in their day. Because of her crusade, many women are regaining hope for a normal, productive life.”

Also, because of her crusade, the work continues through those she enthusiastically mentors as they continue to break new ground in research and treatment.

“She is a rare breed within academic medicine, in that she wants those she’s mentoring to be successful because she sees the bigger picture of it pushing forth the state of the science and providing better care,” said Elisabeth Dinkins, FNP, a nurse practitioner being mentored by Zolnoun and who soon will have her Ph.D. in nursing. She is specializing in biological, psychological and social correlations of pelvic pain. They plan to continue working together on a number of research grants and in treating patients with vulvar pain.

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