Urgent Appeal to Vulvodynia Patients

Although many researchers are working diligently to discover the causes of vulvodynia, we need to determine which medications doctors currently prescribe are effective in relieving vulvar pain. These medications include oral antidepressants and anticonvulsants, and topical medications, such as anesthetics, anti-inflammatories and compounded creams or gels with one or more active ingredients, e.g., amitriptyline and baclofen. In addition, we need to determine the efficacy of specific nerve blocks and pelvic floor physical therapy techniques. The only way clinical researchers can determine which treatments are actually effective is through randomized controlled trials, in which patients are randomly assigned to either a treatment or control (no treatment) group. There have been very few randomized controlled treatment trials with vulvodynia patients. One significant problem is that clinical researchers cannot find enough willing subjects. In spite of the fact that the NVA advertises studies and researchers distribute flyers etc., not enough women with vulvodynia agree to participate in these studies. For example, even two pilot studies NVA funded were terminated at the halfway point, because the researchers could not recruit sufficient numbers of women with vulvodynia. Currently, we are funding an acupuncture study that is enrolling women very slowly, even though subjects are allowed to continue their medication while undergoing treatment. Unfortunately, NIH-funded clinical studies on vulvodynia experience similar difficulty recruiting subjects. This situation is a crisis for women suffering from vulvodynia! Millions of women continue to take medications for many years that have not been proven to relieve vulvar pain. Some of these medications cause undesirable side effects, e.g., weight gain, but they can also cause serious long-term consequences. Consider the following example. One woman with severe vulvar pain was prescribed the anticonvulsant Trileptal (oxcarbamazepine) when she was 38. She took a moderate dose of 900 mg daily for 20 years, and was never sure whether it provided any pain relief. At her annual physicals, she had comprehensive blood tests. Everything was always normal. A few years ago, she read that some anticonvulsants can interfere with Vitamin D absorption, so she asked her doctor to test her Vitamin D level. As the woman feared, she was deficient in Vitamin D. Her internist then recommended a bone density test, because Vitamin D is essential for calcium absorption. Taking the Trileptal may not be the only contributor, but now she has moderate osteoporosis. She tapered the Trileptal as directed and discovered no change in her vulvar symptoms after she stopped it completely. Sometimes you have to take medications for your health, but at least there is scientific evidence that they lower your blood pressure, raise your hormone level, etc. Unfortunately, many women with vulvodynia say they can’t tell if their medication is working, but they continue to take it. Why? Because just like the woman who continued to take Trileptal, they are afraid their pain will become worse without it. Why share this discouraging news? Women suffering from vulvodynia desperately need each one of us who is able to volunteer for upcoming clinical research studies. It is a harsh reality, but women who have vulvodynia are partly responsible for the appalling lack of data on treatment effectiveness. If this situation continues, some of our dedicated researchers may decide to abandon vulvodynia as a field of study. We cannot sit by and let this happen. What can you do? Every few months, visit our website at www.nva.org/for-patients/participate-in-research/ to view a list of studies in need of participants. Also, check each NVA newsletter for study announcements. Please volunteer for the next study in your area, if you are eligible. Since most doctors rely on published research findings to decide what to prescribe, millions of women will benefit from your generosity!