“I was always sore down there. I never really wanted to have sex because I was always in pain,” confessed 26 year-old Yamalis Hernandez, describing symptoms she endured for years, and which were finally diagnosed as vulvodynia, a vulvar pain condition that is believed to afflict millions of women nationwide.
Hernandez, speaking from her home in Rochester, New York, recounted the details of her battle with vulvar pain just a few hours after the National Institutes of Health launched its first Vulvodynia Awareness Campaign on October 24.
“We need this campaign because vulvodynia affects far too many women but often goes undiagnosed,” said Doctor Vivian W. Pinn, director of the Office of Research on Women’s Health at the National Institutes of Health, in her opening remarks launching the campaign at the National Press Club in Washington, D.C.
Women of various ages, races and ethnicities across the U.S. suffer from vulvodynia (“dynia” is the Greek word for pain), but most people have never heard the word and have no idea what this pain disorder is about.
Women who have vulvodynia feel pain, usually in the form of burning, stinging, itching or stabbing, in the vulva, which is the area outside the vagina, including the labia and clitoris. Some women have described it as a sharp, needle-like pain, others feel a more throbbing pain, or sometimes a soreness, in the area. Usually, women feel a mix of these symptoms.
Many women with vulvodynia find it difficult to wear tight clothing, to sit for extended periods, use tampons, ride bicycles and have sexual relations, particularly intercourse. Many become depressed and many suffer in silence, too embarrassed to discuss such a private matter with doctors and even with family or friends. “Too often, this is not discussed in public without embarrassment and without stigma. But it’s about our health, our quality of life,” said Dr. Pinn, explaining that the campaign hopes to bring the condition into public discourse.
“It felt like acid being poured into an open cut, or chards of glass being rubbed against my skin,” Christin Veasley said at the National Press Club. Veasley struggled with vulvodynia for seven years and now serves as associate executive director of the National Vulvodynia Association, a nonprofit organization created in 1994 to educate the public and the medical community about vulvodynia and to provide support to patients.
Some women experience symptoms all the time, even in the absence of any particular trigger. Others feel pain only when pressure is applied to the affected area, such as during a gynecological exam or during sex. This second form of vulvodynia is typically called vestibulodynia, and affects targeted areas of the vulva, particularly the area just underneath the vaginal opening.
Although it is not known just how many women suffer from vulvodynia nationally, a vulvodynia expert at the University of Minnesota believes that millions of women in the U.S. have the condition at any given time. “I have always thought that the true incidence of vulvodynia is probably between 2 and 5 percent of the population. And that’s a lot of women,” said Dr. Bernard L. Harlow, a professor of public health and chair of the division of epidemiology and community health at the University of Minnesota School of Public Health and adjunct professor of epidemiology at the Harvard School of Public Health.
A study published in the Journal of the American Medical Women’s Association in 2003 showed that 16 percent of the approximately 3,500 women surveyed reported having had chronic burning, knifelike pain, or pain on contact that lasted three months or longer at some point in their lives. Seven percent of the women were experiencing such symptoms at the time of the study. The study was conducted by Dr. Harlow and Dr. Elizabeth G. Stewart, a vulvovaginal specialist in Burlington, MA, and assistant professor at Harvard Medical School.
“This is self-reported information,” said Dr. Harlow, “which means the women may or may not go on to actually meet the diagnostic definition when they are actually seen in a clinical setting.”
In their 2003 publication, Harlow and Stewart estimated that approximately 16% of women in the U.S. ages 18 to 64 would suffer from vulvodynia at some point in their lives.
Speaking at the National Press Club last week, Dr. Harlow explained that he has updated his analyses, based on studies of a group of approximately 12,000 women in the Boston metropolitan area. In this larger group of women, Dr. Harlow looked for those who not only reported having had vulvodynia symptoms, but who also reported not having been able to have intercourse because of their pain and who did not have other pelvic disorders that might be confused with vulvodynia. This time, Dr. Harlow found that nine percent of the women reported having had vulvodynia symptoms at some point in their lives.
A study published earlier this year found that 38 out of approximately 1,000 women had experienced vulvodynia within six months of the study and 100 women reported feeling vulvodynia symptoms at some point in their lives. The study, conducted by researchers in New Jersey, appeared in the American Journal of Obstetrics and Gynecology.
Although diagnostic tools often ask women about pain that is sustained over several months, the reality is that many women, like Veasley, suffer from the condition for many years. “Some women have it for years and years, some for a lifetime,” said Dr. Harlow.
No one knows exactly what causes vulvodynia. Some of the possible triggers or causes presently under investigation include inflammatory or infectious disease, stress factors, neurological factors and genetic factors, according to the Office of Research on Women’s Health at the National Institutes of Health.
One of the first challenges that vulvodynia patients face is getting a proper diagnosis. Women with vulvodynia actually have a normal looking vulva, according to Dr. Hope K. Haefner, director of the University of Michigan Center for Vulvar Diseases, who explained at the National Press Club that the first step for providers is to exclude other diagnoses that could be causing the pain, such as a chronic yeast infection, vaginitis, or atrophy of the vulva.
Because the vulva of a vulvodynia patient does not generally bear any visible indicators of the condition, physicians must know to look deeper for it. “We need to work with our clinical colleagues to learn how to diagnose the condition,” Dr. Harlow said in his remarks at the launching of the awareness campaign. In his 2003 study he found that 60% of women with vulvodynia symptoms who sought medical treatment saw three or more doctors, many of whom did not diagnose them with vulvodynia.
One of the goals of the Vulvodynia Awareness Campaign is to educate the medical community, in the hopes that more women will be diagnosed quickly. The National Vulvodynia Association, one of the many partners to the National Institutes of Health in the campaign, released last week an online vulvodynia tutorial providing continuing medical education credits for health care professionals.
But even after they are diagnosed, most vulvodynia patients still face a rough road ahead. There is no cure for the condition. Different treatment options provide partial or even complete relief for many, but not all, patients. The least invasive treatments involve skin care, such as avoiding certain soaps and clothing and cooling the area, as well as the use of topical anesthetics.
The next step is to prescribe oral medication, typically anti-depressants and anti-convulsants, used in vulvodynia cases not to treat depression or convulsions, but because they have proven to be effective in some cases to manage pain, according to Dr. Haefner. Also, nerve blocks are sometimes used for pain control. They are applied by injecting a combination of anesthetics and steroids around the nerves that supply sensation to the vulva.
Dr. Haefner also refers some patients for specialized physical therapy, which in these cases means primarily a localized massage to help restore vulvar and pelvic muscles to their normal functioning and tone. Acupuncture and hypnosis are also being studied and prescribed in the mix of vulvodynia treatments.
“It is not just one disease process, so we need to individualize treatment for each patient,” said Dr. Haefner, emphasizing that the cause of the pain may vary among women. “Right now, we’re often blindly throwing the same treatment at all women,” she lamented.
“First I do everything else possible, and then, as a last resort, I might turn to surgery if the pain is localized to the entranceway,” Dr. Haefner explained.
Surgery is sometimes recommended for women who experience localized pain rather than generalized pain and burning. The procedure entails removing and replacing skin in the painful area.
Hernandez had surgery in Rochester last November. She had been married for a year and still could not have sex because it was so painful. “One day after I complained to my mother, she told me to take a hot bath, two tylenol, and drink a glass of wine. I did that. A glass didn’t help. After drinking the whole bottle and still not being able to have sex, I woke up the next morning really hungover and called Dr. Eigg.”
Doctor Marc Eigg, a gynecologist in private practice in Rochester, performed the surgery. Hernandez described it as a simple outpatient procedure, but it left her with about 70 stitches, she thought. “I told everybody my vagina got a facelift,” said Hernandez. About four months after the surgery Hernandez was able to have sex for the first time, but she said sex is still not entirely pain-free.
More information about the Vulvodynia Awareness Campaign and a full list of campaign partners is available at
http://orwh.od.nih.gov/health/vulvodynia.html.
Hernandez, speaking from her home in Rochester, New York, recounted the details of her battle with vulvar pain just a few hours after the National Institutes of Health launched its first Vulvodynia Awareness Campaign on October 24.
“We need this campaign because vulvodynia affects far too many women but often goes undiagnosed,” said Doctor Vivian W. Pinn, director of the Office of Research on Women’s Health at the National Institutes of Health, in her opening remarks launching the campaign at the National Press Club in Washington, D.C.
Women of various ages, races and ethnicities across the U.S. suffer from vulvodynia (“dynia” is the Greek word for pain), but most people have never heard the word and have no idea what this pain disorder is about.
Women who have vulvodynia feel pain, usually in the form of burning, stinging, itching or stabbing, in the vulva, which is the area outside the vagina, including the labia and clitoris. Some women have described it as a sharp, needle-like pain, others feel a more throbbing pain, or sometimes a soreness, in the area. Usually, women feel a mix of these symptoms.
Many women with vulvodynia find it difficult to wear tight clothing, to sit for extended periods, use tampons, ride bicycles and have sexual relations, particularly intercourse. Many become depressed and many suffer in silence, too embarrassed to discuss such a private matter with doctors and even with family or friends. “Too often, this is not discussed in public without embarrassment and without stigma. But it’s about our health, our quality of life,” said Dr. Pinn, explaining that the campaign hopes to bring the condition into public discourse.
“It felt like acid being poured into an open cut, or chards of glass being rubbed against my skin,” Christin Veasley said at the National Press Club. Veasley struggled with vulvodynia for seven years and now serves as associate executive director of the National Vulvodynia Association, a nonprofit organization created in 1994 to educate the public and the medical community about vulvodynia and to provide support to patients.
Some women experience symptoms all the time, even in the absence of any particular trigger. Others feel pain only when pressure is applied to the affected area, such as during a gynecological exam or during sex. This second form of vulvodynia is typically called vestibulodynia, and affects targeted areas of the vulva, particularly the area just underneath the vaginal opening.
Although it is not known just how many women suffer from vulvodynia nationally, a vulvodynia expert at the University of Minnesota believes that millions of women in the U.S. have the condition at any given time. “I have always thought that the true incidence of vulvodynia is probably between 2 and 5 percent of the population. And that’s a lot of women,” said Dr. Bernard L. Harlow, a professor of public health and chair of the division of epidemiology and community health at the University of Minnesota School of Public Health and adjunct professor of epidemiology at the Harvard School of Public Health.
A study published in the Journal of the American Medical Women’s Association in 2003 showed that 16 percent of the approximately 3,500 women surveyed reported having had chronic burning, knifelike pain, or pain on contact that lasted three months or longer at some point in their lives. Seven percent of the women were experiencing such symptoms at the time of the study. The study was conducted by Dr. Harlow and Dr. Elizabeth G. Stewart, a vulvovaginal specialist in Burlington, MA, and assistant professor at Harvard Medical School.
“This is self-reported information,” said Dr. Harlow, “which means the women may or may not go on to actually meet the diagnostic definition when they are actually seen in a clinical setting.”
In their 2003 publication, Harlow and Stewart estimated that approximately 16% of women in the U.S. ages 18 to 64 would suffer from vulvodynia at some point in their lives.
Speaking at the National Press Club last week, Dr. Harlow explained that he has updated his analyses, based on studies of a group of approximately 12,000 women in the Boston metropolitan area. In this larger group of women, Dr. Harlow looked for those who not only reported having had vulvodynia symptoms, but who also reported not having been able to have intercourse because of their pain and who did not have other pelvic disorders that might be confused with vulvodynia. This time, Dr. Harlow found that nine percent of the women reported having had vulvodynia symptoms at some point in their lives.
A study published earlier this year found that 38 out of approximately 1,000 women had experienced vulvodynia within six months of the study and 100 women reported feeling vulvodynia symptoms at some point in their lives. The study, conducted by researchers in New Jersey, appeared in the American Journal of Obstetrics and Gynecology.
Although diagnostic tools often ask women about pain that is sustained over several months, the reality is that many women, like Veasley, suffer from the condition for many years. “Some women have it for years and years, some for a lifetime,” said Dr. Harlow.
No one knows exactly what causes vulvodynia. Some of the possible triggers or causes presently under investigation include inflammatory or infectious disease, stress factors, neurological factors and genetic factors, according to the Office of Research on Women’s Health at the National Institutes of Health.
One of the first challenges that vulvodynia patients face is getting a proper diagnosis. Women with vulvodynia actually have a normal looking vulva, according to Dr. Hope K. Haefner, director of the University of Michigan Center for Vulvar Diseases, who explained at the National Press Club that the first step for providers is to exclude other diagnoses that could be causing the pain, such as a chronic yeast infection, vaginitis, or atrophy of the vulva.
Because the vulva of a vulvodynia patient does not generally bear any visible indicators of the condition, physicians must know to look deeper for it. “We need to work with our clinical colleagues to learn how to diagnose the condition,” Dr. Harlow said in his remarks at the launching of the awareness campaign. In his 2003 study he found that 60% of women with vulvodynia symptoms who sought medical treatment saw three or more doctors, many of whom did not diagnose them with vulvodynia.
One of the goals of the Vulvodynia Awareness Campaign is to educate the medical community, in the hopes that more women will be diagnosed quickly. The National Vulvodynia Association, one of the many partners to the National Institutes of Health in the campaign, released last week an online vulvodynia tutorial providing continuing medical education credits for health care professionals.
But even after they are diagnosed, most vulvodynia patients still face a rough road ahead. There is no cure for the condition. Different treatment options provide partial or even complete relief for many, but not all, patients. The least invasive treatments involve skin care, such as avoiding certain soaps and clothing and cooling the area, as well as the use of topical anesthetics.
The next step is to prescribe oral medication, typically anti-depressants and anti-convulsants, used in vulvodynia cases not to treat depression or convulsions, but because they have proven to be effective in some cases to manage pain, according to Dr. Haefner. Also, nerve blocks are sometimes used for pain control. They are applied by injecting a combination of anesthetics and steroids around the nerves that supply sensation to the vulva.
Dr. Haefner also refers some patients for specialized physical therapy, which in these cases means primarily a localized massage to help restore vulvar and pelvic muscles to their normal functioning and tone. Acupuncture and hypnosis are also being studied and prescribed in the mix of vulvodynia treatments.
“It is not just one disease process, so we need to individualize treatment for each patient,” said Dr. Haefner, emphasizing that the cause of the pain may vary among women. “Right now, we’re often blindly throwing the same treatment at all women,” she lamented.
“First I do everything else possible, and then, as a last resort, I might turn to surgery if the pain is localized to the entranceway,” Dr. Haefner explained.
Surgery is sometimes recommended for women who experience localized pain rather than generalized pain and burning. The procedure entails removing and replacing skin in the painful area.
Hernandez had surgery in Rochester last November. She had been married for a year and still could not have sex because it was so painful. “One day after I complained to my mother, she told me to take a hot bath, two tylenol, and drink a glass of wine. I did that. A glass didn’t help. After drinking the whole bottle and still not being able to have sex, I woke up the next morning really hungover and called Dr. Eigg.”
Doctor Marc Eigg, a gynecologist in private practice in Rochester, performed the surgery. Hernandez described it as a simple outpatient procedure, but it left her with about 70 stitches, she thought. “I told everybody my vagina got a facelift,” said Hernandez. About four months after the surgery Hernandez was able to have sex for the first time, but she said sex is still not entirely pain-free.
More information about the Vulvodynia Awareness Campaign and a full list of campaign partners is available at
http://orwh.od.nih.gov/health/vulvodynia.html.
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