Vestibulodynia, or vulvar vestibulitis syndrome, is a challenging genital pain condition for both patients and clinicians alike. Vestibulodynia is a localized pain syndrome that occurs as a primary process in the absence of other vulvovaginal conditions. The etiology of vestibulodynia remains elusive and an accurate diagnosis is critical in helping patients manage their pain and improve the quality of their lives. Dr. Catherine M. Leclair is Director of the Program in Vulvar Health at Oregon Health and Science University in Portland, Oregon. In this interview, Dr. Leclair discusses the diagnostic steps necessary for evaluating a patient with vestibulodynia or vestibulitis, and best practices for treating a patient with this condition.
Medscape: How common is vestibulitis as a cause of vulvar pain?
Dr. Leclair: Vestibulitis has now been renamed vestibulodynia and it's much more prevalent than most people realize. One of the original prevalence studies was done by Dr. Martha Goetsch in the late 1980s and was later published in the American Journal of Obstetrics & Gynecology in 1991. After surveying her private practice for about 6 months, Dr. Goetsch found that approximately 15% of her patients experienced vestibulitis or vestibulodynia. This prevalence rate was later supported by a large population-based survey sponsored by the NIH [National Institutes of Health] and conducted by Drs. Bernie Harlow and Elizabeth Stewart. They also found that approximately 16% of the women responding to their survey experienced vulvar pain lasting for more than 3 months. Thus vulvar pain is much more common than was previously understood.
Medscape: What are the typical signs and symptoms of vestibulodynia?
Dr. Leclair: The patient usually presents with dyspareunia, or painful intercourse. In fact, most patients with vestibulodynia complain of pain at the vaginal opening with penetration whether from a tampon, a speculum, or during sexual activity. Dr. Eduard G. Friedrich defined vulvar vestibulitis syndrome as a triad. The criteria include severe pain upon vestibular touch or vaginal penetration, vestibular sensitivity or tenderness with light touch of the vestibule during physical examination, and vestibular erythema upon inspection.
The cotton swab (Q-tip®) test or the swab test has become the standard to examine the vestibule, and a positive response helps secure the diagnosis. The swab test is performed during an office examination and the examiner lightly touches the vestibular tissue with a cotton swab. For most women who have vestibulodynia or vestibulitis, this light touch is experienced as a burning pain as opposed to just a light touch from a cotton swab.
Medscape: Has there been any progress in elucidating the cause of vestibulodynia or is it still largely unknown?
Dr. Leclair: [It's largely unknown, although mounting evidence points toward a neuropathic etiology. Tissue studies of the vestibule in affected women reveal that there is a higher concentration of nerve tissue and inflammatory changes compared with that in controls.[4,5,6,7] The working pathophysiologic model is that some provoking factor -- whether infectious, environmental, genetic, or hormonal -- instigates a change in the tissue of the vestibule, leading to sensitization and amplification of pain. It is unclear whether the histologic changes of the vestibule correlate with the change in sensation -- meaning, the onset of pain in the vestibule -- but many postulate that a connection is likely.]
Medscape: Besides the cotton swab test, is there any other tool you routinely use to evaluate and diagnose vestibulodynia in your patients?
Dr. Leclair: [Because vestibulodynia is a diagnosis of exclusion, it is important to rule out any other cause of pain. Often the chief complaint is painful intercourse, so I like to start with a thorough history that includes questions about the patient's gynecologic and sexual health. It is also important to inquire about other conditions that may be contributing to pain in the patient's pelvis, such as interstitial cystitis or inflammatory bowel disease.
At the time of physical examination, a careful inspection of the vulva and the vagina is important. Dermatologic conditions of the vulva usually lead to skin changes that can be seen on physical examination and confirmed by skin biopsy. Vulvovaginal infection can be diagnosed by careful examination of the vagina aided with vaginal pH, wet mount, and the appropriate use of fungal cultures. Examination of the pelvic floor muscles can determine if she has levator myalgia. Lastly, a bimanual examination helps to determine whether the patient has symptoms deeper in her pelvis. Ultimately, if no dermatologic, infectious, myofascial, or deep pelvic cause for pain is seen, vulvodynia should be considered.]
Medscape: One of the challenges of treating patients with chronic pain is that they have usually been treated by several other providers and have multiple conditions leading to their problems. In terms of interstitial cystitis and infection, what are the common diagnoses or misdiagnoses that you see people with vestibulodynia carry before they're accurately diagnosed?
Dr. Leclair: Your observation about women getting a misdiagnosis is actually much more common than we realized. Most women see at least 3 practitioners before a diagnosis is made. Some of the common misdiagnoses include candidal infections, bacterial vaginosis, other causes of pelvic pain such as endometriosis, irritable bowel syndrome, interstitial cystitis, hyperestrogenism (hormonal changes), and anxiety. It's not uncommon for a woman to present to the Vulvar Clinic having been treated multiple times for multiple other different diagnoses but her pain persists. That's also very helpful in your history to tip you off that this might be vestibulodynia.
Medscape: Once you've made the diagnosis, what are the first-line medical and other therapies for a patient with vestibulodynia?
Dr. Leclair: Most of the available data regarding treatment for vestibulodynia are based on clinical experience, case series, prospective cohort studies, and reports from expert committees from reputed societies, such as the American College of Obstetricians and Gynecologists [ACOG] or the International Society for the Study of Vulvovaginal Disease [ISSVD]. Multiple treatments are often tried on a single patient. [Unfortunately, no single treatment consistently works for this condition.] Some practitioners will ask their patients to begin by improving local vulvar care measures like avoiding soaps, detergents, and perfumed products to the vulva; wearing 100% cotton underwear; using adequate lubricants when they have intercourse; and avoiding any kind of self-treatment with over-the-counter products. All of these behavioral changes can help reduce local irritation to the tissue. Another treatment includes the use of topical lidocaine. Lidocaine applied topically can provide excellent palliation for the patient. She can apply a 2% gel or a 4% liquid 10 to 15 minutes before intercourse. With the aid of a good lubricant, some women can have enough reduction in pain that they can have pretty comfortable intercourse.
Other treatments that can be tried are various topical and oral treatments that somehow modulate the nervous system. Because there's growing evidence that local nervous system changes occur in the vestibule for women who have this condition, targeted treatments are being developed that affect the vestibule either locally at the level of the skin or centrally at the level of the brain. These treatments include orally administered neuromodulators, such as amitriptyline and gabapentin, locally applied products like a strong 5% lidocaine ointment, and topically compounded products such as gabapentin cream or amitriptyline cream. Capsaicin, which is an irritant found in hot chili peppers, has also been used as a topical treatment. It's a cream that can be applied multiple times a day and has been found to reduce pain, likely through the process of desensitizing the tissue.[4,5,6,7]
Pelvic floor physical therapy and biofeedback are other treatments that are offered to patients with vestibulodynia. Biofeedback is a technique that is used by a trained physical therapist, and these techniques can play an integral role in the treatment of vestibulodynia. Some independent data have shown that physical therapy alone or in combination with other treatments for the vestibular skin can be effective in reducing pain at the vaginal opening. In one of the few randomized clinical trials in this field, Sophie Bergeron, PhD, at the University of Quebec at Montreal compared sexual counseling, physical therapy, and surgery for the treatment of vestibulodynia. She found that all 3 groups reported improvement in their pain. [Because vestibulodynia is likely a multifactorial problem, most believe that the approach to treatment should include a combination of treatments. A typical plan may include an oral neuromodulator, physical therapy, and sexual counseling in a single patient with vestibulodynia.][10,11,12]
Medscape: So rather than trying 1 treatment and waiting to see a response, starting with a couple of treatments will get patients better results?
Dr. Leclair: [Yes, that is correct. Many women have suffered severe alteration in quality of life and intimacy due to vestibulodynia and therefore benefit from a multidisciplinary approach to their sexual pain.]
Medscape: When would you consider surgery? And is it ever curative?
Dr. Leclair: [Vestibulectomy is the surgical removal of the painful skin of the vestibule. Although it is a reasonable treatment option for some women, it is considered an] area of controversy in our field since the etiology of vestibulodynia is still unknown. Some experts believe that vestibulodynia is a medical problem and others believe that it's a surgical problem. Nonetheless, surgical treatment of vestibulodynia [has been shown to be successful for many patients, and most of the outcome data report a 65%-90% improvement in pain with this surgical procedure.][13,14,15]
Medscape: Does patient selection for surgery depend on whether they have localized vestibulitis or does it have more to do with a response to different treatment options?
Dr. Leclair: It has more to do with the pain being localized at the vestibule [than with previous response to different treatment options. In addition, it is important to be sure that the patient really has vestibular skin pain. Meaning, if the pain isn't specific to the vestibule, then surgery is not the right option for her. Some women move toward a surgical solution when all other treatment options have been exhausted. Some women decide to have surgery sooner. It really depends on the individual, her practitioner, and the discussion regarding her sexual pain. Because most of these patients have factors that contribute to painful intercourse besides skin pain at the vestibule, it is important to address if she has pelvic floor muscle pain and intimacy issues such as poor arousal as well. Setting expectations about what surgery can accomplish is an important discussion between the patient and the practitioner when surgery is being considered.]
Medscape: You just mentioned a complex array of problems that people with this diagnosis often have. Is there possibly a barrier to diagnosis and treatment because of a perception by clinicians that vestibulitis is a psychologic rather than a physiologic condition?
Dr. Leclair: Sure. Most barriers to diagnosis are due to lack of education, so I appreciate your comment. I think that as the science behind this condition slowly unfolds, and more information about vestibulodynia is provided through educational leaders such as ACOG, the ISSVD, and the National Vulvodynia Association, more and more providers and medical learners will be exposed to this condition, and hopefully misdiagnosis will be much less common.
Medscape: Does depression frequently coexist with vestibulodynia?
Dr. Leclair: It can. Because of the profound effect that vestibulodynia has on a woman's self-esteem and intimacy, rates of depression, anxiety, and sexual dysfunction are higher in this population of women compared with women who don't have pain.[16,17,18,19] Emotional support from a loving partner [and family, along with help from a dedicated medical provider, can provide the necessary help and support a woman needs to deal with this difficult sexual pain condition].
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Cite this: Vulvar Pain: An Expert Interview With Catherine M. Leclair, MD - Medscape - Sep 30, 2009.