Information from Libby Edwards, MD - Mid-Charlotte Dermatology & Research

VESTIBULODYNIA

Vulvodynia is defined as sensations of burning, rawness, stinging, stabbing, tearing, aching, or irritation that have been present for at least six months, and are not caused by any specific disease – no infection, skin disease, or specific neurologic disorder. Burning that occurs with touch or pressure at the opening of the vagina (called the “vestibule”) – and ONLY in that area – is called “vestibulodynia.” Often, women with vestibulodynia have a minor problem found on evaluation in the office, such as a yeast infection, low estrogen, or irritation from overwashing. If the correction of any abnormalities seen in the office does not clear the discomfort, the diagnosis of vestibulodynia is made.

Although vestibulodynia generally is not cured, most women respond well to therapy and symptoms can be controlled. Treatment is slow, and often several different therapies have to be tried. Occasionally, vestibulodynia simply goes away.

Vestibulodynia most likely is caused by a combination of a nerve abnormality (neuritis, neuralgia), pelvic floor muscle weakness and irritability, irritation from previous treatments and overwashing, and anxiety/depression. Several kinds of nerve abnormalities probably produce vestibulodynia, but there is little research investigating this. Some patients have more nerve endings in the skin than other women, perhaps making the area more sensitive than normal. Others may have a form of nerve pain called “reflex sympathetic dystrophy” or “regional complex pain syndrome”. In this kind of discomfort, pain signals from an injury (and the injury may be minor, such as a severe yeast infection, or major, such as surgery) continue after the cause of the injury has resolved. Still another form of nerve pain occurs when the pudenal nerve is injured, as may occur with childbirth or surgery. A pinched nerve from a bad disc in the back may be responsible in some patients. Also, many patients may have vestibulodynia as a result of the brain’s interpretation of nerve impulses, so that normally painless experiences are perceived as painful (sexual activity, tight clothing). These women often have other pain syndromes, such as headaches, irritable bowel syndrome, interstitial cystitis, fibromyalgia, temporomandibular joint syndrome, etc. Vestibulodynia caused by all of these forms of nerve abnormality have three features in common: First, the physical examination is normal except for some patients who may have some redness, swelling, or thinning of the skin. Second, there is no easy, specific test to prove these diagnoses. Third, medications for neuropathic pain, such as amitriptyline and desipramine, and attention to the pelvic floor muscles generally improve vulvar burning and irritation in most people.

Most skin diseases and infections of the vagina and vulva produce itching rather than burning and pain with sexual activity. However, infection can be eliminated as a cause of vulvar burning and pain by a negative culture (or burning that continues after successful elimination of the infection). And skin disease is visible to the examiner. Redness and a feeling of swelling are common in vestibulodynia and do not signify skin disease or infection. Occasionally, skin disease in the vagina (desquamative inflammatory vaginitis and lichen planus) can be sneaky causes of burning, but an examination of vaginal fluid that appears normal under the microscope eliminates these diseases as possibilities.

Vestibulodynia is not associated with cancer, sexually transmitted disease, or any kind of infection that is passed back and forth between sexual partners. There is no relationship of vestibulodynia to AIDS. Vestibulodynia does not affect fertility or the ability to carry pregnancy to term and have a normal delivery. Vestibulodynia is not an early sign of any disease that affects overall health. There is no good evidence that vestibulodynia is a psychosomatic disease, but it is well known that vestibulodynia causes tremendous emotional stress, and stress worsens the symptoms of any disease. Also, the anxiety and depression that longstanding genital pain produces, the psychological injury to a woman’s self esteem and her sexual identity, and the damage to the relationship with a sexual partner can be devastating.

The management of vestibulodynia addresses the several different causes of vestibulodynia, so treatment involves several different therapies at the same time.

First, you should stop all things that may be irritating the skin. Avoid soap, panty liners, creams for infections, any medications with benzocaine or diphenhydramine to numb the skin, and most commercial vaginal lubricants (KY Jelly).

Second, lidocaine jelly 2% is a mild and safe numbing jelly that can be used both any time you are burning, and for 15-20 minutes before sexual activity to help avoid some of the pain.

Third, medication for neuropathic pain is often beneficial. These include medications that were originally developed for depression, but have been found to have specific benefits for neuropathic pain. These are amitriptyline (Elavil), desipramine,

venlafaxine (Effexor), and duloxetine (Cymbalta). Other well known antidepressants including fluoxetine (Prozac), paroxetine (Paxil), bupropion (Wellbutrin), (citalopram) Celexa, etc, are useful antidepressants, but have no independent effects on pain. Medications developed for seizures are sometimes useful as well. Those most often used are gabapentin (Neurontin) and pregabalin (Lyrica).

Fourth, most women benefit from therapy to strengthen pelvic floor muscles. This can be done with physical therapy or with a fairly well-studied (but not widely available) regimen of home exercises with the use of surface electromyography as a biofeedback tool.

Fifth, there are a number of topical therapies used in some women, depending upon many factors including the location of pain, age, and response to other treatments. These include the regular nighttime use of lidocaine ointment 5%, estrogen, nitroglycerin, and amitriptyline/baclofen combination ointment.

Sixth, a few clinicians have used more experimental treatments, including Botox (botulinum toxin), acupuncture, and hypnosis. A low oxalate diet with calcium citrate with meals is occasionally used.

Seventh, the painful vestibule can be surgically removed, and this is the single best treatment for vestibulodynia. However, success of this surgery (vestibulectomy), is dependent upon the location of the pain being strictly and always limited to the opening of the vagina. Also, many clinicians find that women who have been treated with oral medications and pelvic floor therapy have better success with surgery, and find that surgery is unnecessary.

Eighth, BUT NOT LAST, is counseling and sex therapy. Even though the cause of vestibulodynia is not psychological, the psychological repercussions can be devastating. Most women experience feelings of depression, anger, anxiety, guilt, loss of self esteem, loss of libido and loss of feelings of femininity and sexuality. Their partners are often experiencing many of the same emotions. As women avoid sexual intimacy, many avoid other kinds of physical contact (such as holding hands and kissing) because of fear that touching of any kind might progress to painful or unwanted sexual activity. Soon, loss of intimacy, both physical and emotional, occurs. Because pain with intercourse, and sometimes a complete inability to have intercourse, is a very private and intimate matter that can be difficult to discuss, women generally do not discuss this with other family and friends. Also, the pain sometimes interferes with choice of clothing, diet, and activities such as exercise, sitting for long periods, etc, thus impacting all areas of life.

Recovery from vestibulodynia requires not only the medical treatments above, but also attention to your – and your partner’s – psychological health.

Additional information and regular newsletters can be obtained from joining the National Vulvodynia Association. Information from this organization helps women to realize that they are not alone, and that this is a common problem and an active area for research.

National Vulvodynia Association

www.NVA.org