What is vulvodynia?
Vulvodynia literally means pain of the vulva. It is a chronic pain condition that affects up to 15% of women at some point in their lives. Spanning all backgrounds, there seem to be no women of any age, race/ethnicity or economic background unaffected by this disorder.
There are currently two types of vulvodynia: localized and generalized vulvodynia. Localized vulvodynia occurs in the vulvar vestibule, while generalized pain is throughout the vulvar area. Either may be provoked--worsen with stimuli such as touch (e.g., sex, tampon, bike), be spontaneous, or be a mix of the two.
What are the symptoms of vulvodynia?
Vulvodynia means that a woman is experiencing pain in the vulvar region, which itself is actually a symptom of some other cause. Consider the analogy of foot pain. Is chest pain a diagnosis? Well, sort of. It describes the "nature of an illness or problem." And, it encourages a physician to run a battery of tests to find the exact cause of pain, such as a break or fracture, muscular atrophy, or a plantar's wart. However, each cause of foot pain demands a different solution. If a patient's pain is caused by a break, the bones must be splinted and allowed to heal; giving them an antifungal cream will clearly not help. Similarly, vulvar pain has many causes, many of which are yet unknown or unproven. But, once we find the exact cause(s) of pain, we can treat it effectively.
Because causes can vary, the experience of pain can be different among women, ranging from burning, stinging and rawness to aching, throbbing or even itching in the vaginal region. Further, no matter the cause, the symptom of pain can lead to other symptoms, including a tightening or spasming of the vaginal muscles as they try to "protect" the area from further pain (vaginismus) and emotional distress that may lead to depression.
What causes vulvodynia?
"Vulvodynia" is a diagnosis of exclusion. In other words, it is the name given to the symptom of vulvar pain when a physician is unable to determine the cause of pain. It is considered "chronic" because women will continue to experience pain over the course of their lives until they determine their specific cause of pain and subsequently can start a course of treatment that eliminates this cause. That said, there are many possible causes of vulvodynia, which means there are many possible treatments to help women manage or even eliminate their pain. For instance, many practitioners believe vulvar pain may be caused by an abnormally high concentration of nerve fibers in the vestibule or nerves in the area that are irritated or damaged by trauma, anatomical abnormalities, or tight pelvic floor muscles. Others believe that vulvar pain is related to deficiencies or imbalances in hormones such as testosterone or estrogen. Still others believe that pain is related to chronic yeast infections that may or may not be detectable by normal lab tests; yeast infections trigger the release of mast cells, which themselves cause the release of nerve growth factor and cause the growth of more nerve endings (and increased sensitivity). Yet others link unexplained vulvar pain to a mental trauma--such as sexual abuse. Oxalates in the urine or overly chlorinated water has been known to irritate the skin of some women as well, which leads to painful inflammation. And, even though vaginismus is often a symptom of pain as the vagina tries to protect itself, it is also the cause of pain for some women who lack the ability to relax their muscles--often by pressing on the pudendal nerve. Only through more research will we figure out the cause(s) of vulvar pain. Until then, women suffering from vulvodynia must be diligent about educating themselves on the many possible causes of vulvar pain and prepare themselves for the long road of trial and error in treating it. (If you haven't yet, check out the book "When Sex Hurts", which has a nice chart in it to help you and your doctor consider many causes. The Winter 2015 issue of the NVA newsletter also may be helpful, as Dr. Andrew Goldstein discussing his approach to developing a new diagnostic algorithm for vulvodynia.)
How do you treat vulvodynia?
Every woman is different. One woman may have vulvodynia because of a high concentration of nerves, while another may have had a traumatic injury or may just have anatomical abnormality pressing on a nerve that causes pain--such as those with pudendal neuralgia. Others may have too little estrogen or testosterone--a hormonal imbalance. Others may have a chronic yeast infection that causes chronic inflammation and pain. Others may have tense pelvic floor muscles that cause pain via inflammation or nerve irritation. Many women may have a combination of these. These different causes demand different treatments--or combinations of treatments. If a woman is treated for the wrong cause, she will see no relief. But, this does not mean another woman who actually has that cause won't find relief.
Further, every course of treatment may differ. One woman may have a higher concentration of nerve fibers in the vulvar area compared to another woman, for instance, and therefore require a longer and stronger course of treatment to relieve her pain. If she is treated incorrectly, she may not find relief until her dosage and length of prognosis are adjusted, or in many cases, the specific type of drug used. For example, many antidepressants have an off-label use for pain management. Many women and their doctors may assume that, "Antidepressants start working for depression in four weeks at [x] milligrams, so I should see relief in my vulvar pain within four at this dosage as well." This simply may not be the case. Until we know more about vulvodynia, we cannot make assumptions about how long it will take a specific treatment to work or under what dosage. In fact, I remember reading one story of success from a woman who had been on an antidepressant for 18 months and then found relief. And, we cannot assume that just because antidepressant A didn't work that antidepressant B won't work either. It's unfortunately a long road to recovery for this disease, as there are innumerable ways to try a treatment, including not only the drug type, dosage and length of time, but also what things we do while trying it--such as layering on physical therapy, avoiding oxalates, using topical lidocaine, and so forth.
The point is that every woman is different from their cause of pain to their need for and compliance with their course of treatment. There is no magic bullet to reduce or eliminate the pain of vulvodynia for all women. That said, there are many things women can do to hone in on the possible aggravators (if not causes) of their pain, such as getting their hormone levels tested and taking a thorough account of their life to try pinpoint their specific source of pain. When these efforts fail, women must be prepared for the rather labyrinthed approach to finding relief--trial and error. To expedite this process, it is advised to try a combination of treatments at once that are unlikely to compete with one another, namely 1) something chemical, like an antidepressant, 2) something physical, like physical therapy, and 3) something mental, like psychotherapy. Some of the more common treatments include:
Many women suffering from pain have also tried at-home remedies, including reducing possible irritation from soap by using more natural products for laundering their clothing, washing the vaginal area with water only, or even installing a whole-house water filter to ensure the water they shower with is less acidic. Some use "light days" tampons on a daily basis to prevent their own vaginal fluids from reaching their skin, which for some causes irritation. And, many apply lubricant on a daily basis to reduce friction in the area.
Note: With so much uncertainty surrounding the cause(s) of vulvodynia, women suffering from vulvodynia should never assume that a treatment that did or did not work for one woman would have the same outcome for them. One woman saying, "I tried x, y or z, and it did not help me," is an ambiguous statement to make. What do they mean they "tried" x, y or z? For how long? In what dose? And, what is their specific cause of vulvodynia? Does this treatment attend to that cause? There have been many women to exclaim that a given treatment did not work. After digging deeper, you might find examples of women who had been on a given treatment for only three days before giving up because the side effects were undesirable. Would three days really be enough time to determine that this treatment did not work? Many other women do physical therapy for their pain but neglect to do their home exercises on the days they have no appointments. When these women claim their physical therapy is not helping, is that true? Or could their lack of progress have to do with their lack of compliance?
Can vulvodynia get worse?
There is currently no evidence that vulvar pain changes drastically for better or worse over time. However, some women have said that their pain fluctuates over time depending on where they are in their menstrual cycle, what kinds of food they have been eating or depending upon their level of stress. Women suffering from vulvodynia often refer to times of increased pain as a "flare up." The level of vulvar pain also may vary depending upon how compliant women are with their treatment and whether or not they experience additional symptoms, such as vaginismus or depression or comorbidities like TMJ or ulcerative colitis. Many women have found relief by trying to combat everything at once, including using chemicals like antidepressants to reduce pain, psychotherapy to keep the mind strong and physical therapy to maintain control of the muscles involved in their pain.
*It is important to work with your compounding pharmacist to ensure the base within which your medication is mixed does not irritate your skin. Many women falsely assume their medication creates a burning sensation in the vulvar area, which then causes them to stop using their medication. However, by trying out alternative bases, these women have realized it's the base that burns--not the medication. Suggestions for bases include things like Aquaphor or Vaseline.
**Physical therapy varies wildly in its approach from biofeedback and relaxation breathing to intravaginal massage and skin rolling to core strengthening and postural improvement, among others. Consider the expertise of the physical therapist you choose when deciding to start physical therapy. And, try all different types of physical therapy before concluding that, "it does not work!"
Vulvodynia literally means pain of the vulva. It is a chronic pain condition that affects up to 15% of women at some point in their lives. Spanning all backgrounds, there seem to be no women of any age, race/ethnicity or economic background unaffected by this disorder.
There are currently two types of vulvodynia: localized and generalized vulvodynia. Localized vulvodynia occurs in the vulvar vestibule, while generalized pain is throughout the vulvar area. Either may be provoked--worsen with stimuli such as touch (e.g., sex, tampon, bike), be spontaneous, or be a mix of the two.
What are the symptoms of vulvodynia?
Vulvodynia means that a woman is experiencing pain in the vulvar region, which itself is actually a symptom of some other cause. Consider the analogy of foot pain. Is chest pain a diagnosis? Well, sort of. It describes the "nature of an illness or problem." And, it encourages a physician to run a battery of tests to find the exact cause of pain, such as a break or fracture, muscular atrophy, or a plantar's wart. However, each cause of foot pain demands a different solution. If a patient's pain is caused by a break, the bones must be splinted and allowed to heal; giving them an antifungal cream will clearly not help. Similarly, vulvar pain has many causes, many of which are yet unknown or unproven. But, once we find the exact cause(s) of pain, we can treat it effectively.
Because causes can vary, the experience of pain can be different among women, ranging from burning, stinging and rawness to aching, throbbing or even itching in the vaginal region. Further, no matter the cause, the symptom of pain can lead to other symptoms, including a tightening or spasming of the vaginal muscles as they try to "protect" the area from further pain (vaginismus) and emotional distress that may lead to depression.
What causes vulvodynia?
"Vulvodynia" is a diagnosis of exclusion. In other words, it is the name given to the symptom of vulvar pain when a physician is unable to determine the cause of pain. It is considered "chronic" because women will continue to experience pain over the course of their lives until they determine their specific cause of pain and subsequently can start a course of treatment that eliminates this cause. That said, there are many possible causes of vulvodynia, which means there are many possible treatments to help women manage or even eliminate their pain. For instance, many practitioners believe vulvar pain may be caused by an abnormally high concentration of nerve fibers in the vestibule or nerves in the area that are irritated or damaged by trauma, anatomical abnormalities, or tight pelvic floor muscles. Others believe that vulvar pain is related to deficiencies or imbalances in hormones such as testosterone or estrogen. Still others believe that pain is related to chronic yeast infections that may or may not be detectable by normal lab tests; yeast infections trigger the release of mast cells, which themselves cause the release of nerve growth factor and cause the growth of more nerve endings (and increased sensitivity). Yet others link unexplained vulvar pain to a mental trauma--such as sexual abuse. Oxalates in the urine or overly chlorinated water has been known to irritate the skin of some women as well, which leads to painful inflammation. And, even though vaginismus is often a symptom of pain as the vagina tries to protect itself, it is also the cause of pain for some women who lack the ability to relax their muscles--often by pressing on the pudendal nerve. Only through more research will we figure out the cause(s) of vulvar pain. Until then, women suffering from vulvodynia must be diligent about educating themselves on the many possible causes of vulvar pain and prepare themselves for the long road of trial and error in treating it. (If you haven't yet, check out the book "When Sex Hurts", which has a nice chart in it to help you and your doctor consider many causes. The Winter 2015 issue of the NVA newsletter also may be helpful, as Dr. Andrew Goldstein discussing his approach to developing a new diagnostic algorithm for vulvodynia.)
How do you treat vulvodynia?
Every woman is different. One woman may have vulvodynia because of a high concentration of nerves, while another may have had a traumatic injury or may just have anatomical abnormality pressing on a nerve that causes pain--such as those with pudendal neuralgia. Others may have too little estrogen or testosterone--a hormonal imbalance. Others may have a chronic yeast infection that causes chronic inflammation and pain. Others may have tense pelvic floor muscles that cause pain via inflammation or nerve irritation. Many women may have a combination of these. These different causes demand different treatments--or combinations of treatments. If a woman is treated for the wrong cause, she will see no relief. But, this does not mean another woman who actually has that cause won't find relief.
Further, every course of treatment may differ. One woman may have a higher concentration of nerve fibers in the vulvar area compared to another woman, for instance, and therefore require a longer and stronger course of treatment to relieve her pain. If she is treated incorrectly, she may not find relief until her dosage and length of prognosis are adjusted, or in many cases, the specific type of drug used. For example, many antidepressants have an off-label use for pain management. Many women and their doctors may assume that, "Antidepressants start working for depression in four weeks at [x] milligrams, so I should see relief in my vulvar pain within four at this dosage as well." This simply may not be the case. Until we know more about vulvodynia, we cannot make assumptions about how long it will take a specific treatment to work or under what dosage. In fact, I remember reading one story of success from a woman who had been on an antidepressant for 18 months and then found relief. And, we cannot assume that just because antidepressant A didn't work that antidepressant B won't work either. It's unfortunately a long road to recovery for this disease, as there are innumerable ways to try a treatment, including not only the drug type, dosage and length of time, but also what things we do while trying it--such as layering on physical therapy, avoiding oxalates, using topical lidocaine, and so forth.
The point is that every woman is different from their cause of pain to their need for and compliance with their course of treatment. There is no magic bullet to reduce or eliminate the pain of vulvodynia for all women. That said, there are many things women can do to hone in on the possible aggravators (if not causes) of their pain, such as getting their hormone levels tested and taking a thorough account of their life to try pinpoint their specific source of pain. When these efforts fail, women must be prepared for the rather labyrinthed approach to finding relief--trial and error. To expedite this process, it is advised to try a combination of treatments at once that are unlikely to compete with one another, namely 1) something chemical, like an antidepressant, 2) something physical, like physical therapy, and 3) something mental, like psychotherapy. Some of the more common treatments include:
- Oral medications, such as pain killers, antidepressants and hormones
- Topical medications, such as hormones or antidepressants, compounded into a cream or gel*
- Topical numbing agents, such as lidocaine
- Nerve blocks
- Physical therapy**
- Elimination diets, such as a low oxalate diet (assumed culprit: oxalates in the urine) or low sugar diet (assumed culprit: yeast)
- And, as a last resort and only for specific cases (usually provoked vulvodynia only), surgical removal of the affected area
Many women suffering from pain have also tried at-home remedies, including reducing possible irritation from soap by using more natural products for laundering their clothing, washing the vaginal area with water only, or even installing a whole-house water filter to ensure the water they shower with is less acidic. Some use "light days" tampons on a daily basis to prevent their own vaginal fluids from reaching their skin, which for some causes irritation. And, many apply lubricant on a daily basis to reduce friction in the area.
Note: With so much uncertainty surrounding the cause(s) of vulvodynia, women suffering from vulvodynia should never assume that a treatment that did or did not work for one woman would have the same outcome for them. One woman saying, "I tried x, y or z, and it did not help me," is an ambiguous statement to make. What do they mean they "tried" x, y or z? For how long? In what dose? And, what is their specific cause of vulvodynia? Does this treatment attend to that cause? There have been many women to exclaim that a given treatment did not work. After digging deeper, you might find examples of women who had been on a given treatment for only three days before giving up because the side effects were undesirable. Would three days really be enough time to determine that this treatment did not work? Many other women do physical therapy for their pain but neglect to do their home exercises on the days they have no appointments. When these women claim their physical therapy is not helping, is that true? Or could their lack of progress have to do with their lack of compliance?
Can vulvodynia get worse?
There is currently no evidence that vulvar pain changes drastically for better or worse over time. However, some women have said that their pain fluctuates over time depending on where they are in their menstrual cycle, what kinds of food they have been eating or depending upon their level of stress. Women suffering from vulvodynia often refer to times of increased pain as a "flare up." The level of vulvar pain also may vary depending upon how compliant women are with their treatment and whether or not they experience additional symptoms, such as vaginismus or depression or comorbidities like TMJ or ulcerative colitis. Many women have found relief by trying to combat everything at once, including using chemicals like antidepressants to reduce pain, psychotherapy to keep the mind strong and physical therapy to maintain control of the muscles involved in their pain.
*It is important to work with your compounding pharmacist to ensure the base within which your medication is mixed does not irritate your skin. Many women falsely assume their medication creates a burning sensation in the vulvar area, which then causes them to stop using their medication. However, by trying out alternative bases, these women have realized it's the base that burns--not the medication. Suggestions for bases include things like Aquaphor or Vaseline.
**Physical therapy varies wildly in its approach from biofeedback and relaxation breathing to intravaginal massage and skin rolling to core strengthening and postural improvement, among others. Consider the expertise of the physical therapist you choose when deciding to start physical therapy. And, try all different types of physical therapy before concluding that, "it does not work!"