Women hesitant to discuss sexual medical condition
Given the nature of Vulvodynia, a condition found among women who experience pain and discomfort in their vulva, women may find it difficult to open up and speak about their suffering.
But Dr. Nancy Phillips, obstetrics and gynecology specialist at the University of Medicine and Dentistry of New Jersey and Robert Wood Johnson University Hospital, said she aims to erase the stigma and find a resolution to the condition.
“I think in any sexual problem, just like abuse, women are hesitant to talk about it so it’s important to ask them,” Phillips said. “Anybody that I see for any routine evaluation, I ask them about abuse. I ask about sexual function. I think that as a gynecologist that’s our job.”
Vulvodynia, a condition for which source and cure are unknown, is undergoing intensive research and testing at UMDNJ and RWJUH.
“It can be potentially debilitating to women,” Phillips said. “It interferes with their day-to-day function, it interferes with their sexual function — some people are so uncomfortable they can’t even sit down.”
The condition’s ambiguity has created controversy in the medical field, as there are a number of theories on the origin of the pain, she said. Some doctors claim it to be a skin disease while others attribute it to a nerve problem.
“It’s kind of an enigma,” Phillips said. “Nobody really knows the etiology of it. There are several treatment options but very few have been studied and validated. It’s a lot of trial and error.”
While other sufferers may be comfortable sitting, they may still suffer from provoked Vulvodynia, where they experience pain from penetration, she said. This pain varies with each patient and can be either continuous or occasional.
Patients can also suffer social effects as their lives and relationships are disrupted and they find themselves suffering from depression or even isolation, she said. To cope, some patients turn to narcotics as a means of pain control.
“A big problem is that it’s been misdiagnosed,” Phillips said. “Most people are told they have recurrent yeast and are just treated again and again for yeast. And over-treating makes things worse. The more you put on the area, the worst it can become.”
The department is now working with Gabapentin, a medication used for seizures, in an effort to turn off nerve endings and cease the perception of pain, she said.
“We have a study looking at one potential treatment in a randomized fashion,” she said. “A lot of these studies have never been looked at — they are all anecdotal. Nobody has really done the studies to see if these things are really working.”
She said her team is also looking into physiologic testing to find out if the issue is centrally mediated and what other things are associated.
In addition to treating with Gabapentin, they screen for Fibromyalgia, an unexplained pain in the muscles and joints, to see if the condition may be associated with muscle issue.
Diane Dawicki, research coordinator for the Women’s Health Institute at UMDNJ, said the department has been studying the condition for about 13 years and they received a grant two years ago to aid them in this research from the National Institutes of Health.
The University of Tennessee and the University of Rochester collaborated with UMDNJ to write a protocol that would be submitted to the institute in order to receive the funding.
Dawicki said through this funding, the department was able to conduct testing with the various treatments on their Vulvodynia patients.
Phillips said the studies and testing will most likely continue for the next few years, but so far they have come to the conclusion that a one-stop solution does not exist, as each woman’s case has proven unique and responsive in different ways to the different treatments.
“We’re not ever going to get one fix but it would nice to know the things we’re trying have at least shown to be helpful and safe … There is no set standard of care — it would be nice to be less trial and error and more evidence based,” she said.
She said in cases where treatments are unsuccessful, patients sometimes resort in getting the vulva removed through surgery.
“That will have about a 70 percent success rate in certain populations,” she said. “So that’s how bad this is — if you could imagine having to undergo that type of treatment.”
Despite the success rate, women can suffer from scarring and other constrictions in the area, which she said replaces one problem with another.
Since there are many vague areas in regards to the specifics of what causes and stimulates the condition, Phillips said it is easier for some in the medical community to shy away from the complexities, which can cause the specialists who treat the issue to be rare.
“Sometimes [patients are] so happy just to know that what they have has a name — that they are not crazy, because people have been telling them that they are crazy. They are just so happy to know that … there are people trying to help with it,” she said.
