What is Vulvodynia?
Vulvodynia (literally, painful vulva) is the medical term used to describe unexplained and persistent pain in a woman’s genital area (vulva).
Studies indicate that has many as one woman in six experiences unexplained periods of genital pain lasting 3 months or more. The pain can be so intense that many everyday activities become impossible, disrupting relationships, families and careers and leaving women feeling isolated and hopeless. Yet for various reasons, many doctors, even some ob-gyns, do not know enough about vulvodynia to treat it effectively or even to recognize it in their patients.
Vulvodynia and Its Symptoms
Vulvodynia is a term adopted in 1976 by the International Society for the Study of Vulvovaginal Disease to describe unexplained, chronic pain in the external genitals (vulva). Studies indicate that as many as 15 per cent of women (one in six) experience periods of vulvar pain, with symptoms that include severe burning, pain, itching, stinging, and irritation.
There are two types of vulvodynia:
- In generalized vulvodynia, unprovoked, spontaneous symptoms occur over all or parts of the vulva at various times, sometimes even when the vulva is not being touched or pressed.
- In localized vulvodynia (formerly called vestibulodynia, vulvar vestibulitis, or localized vulvar dysesthesia), women feel pain mainly in an area just around the vaginal opening (the vestibule), and usually only when that area is touched or pressed.
Getting help for vulvodynia can be challenging. Some patients are lucky enough to have a primary doctor or Ob-Gyn who recognizes the symptoms and can direct them to a qualified specialist. Unfortunately, many doctors—whether general practitioners or Ob-Gyns—have little familiarity with the disorder. Some patients may see multiple doctors over a period of months or years before getting a correct diagnosis. (Patients see an average of five doctors before being diagnosed.) It’s essential to find a supportive practitioner who is knowledgeable about the vulva and who will explore treatment options with you.
Finding such a practitioner may take some work, since there simply are not many. You will need to consult a specialist, a medical professional who has taken the time to fully research this complicated and mysterious condition. You might start by asking your regular gynecologist or primary care physician for the name of a specialist in vulvar or pelvic pain. If your regular doctor is not familiar with the disorder, you may need to gather some information and explain why you think you might have vulvodynia.
Additional sources of information about specialists who treat vulvodynia include:
- The National Vulvodynia Association maintains a list of vulvar care specialists, which is available to members. A $45 tax-deductible donation is requested for a patient membership. Patients who are experiencing financial hardship can receive membership and other services free. Please contact the National Vulvodynia Association for more information.
- An internet search on “vulvodynia” and your state or nearest urban area (e.g., “vulvodynia Massachusetts” can lead you to local practices that specialize in vulvar pain disorders.
- If you are fortunate enough to have a vulvodynia support group in your area, an internet search on “vulvodynia support group” and your region will lead you to it. The support group contact and members will be able to help you find a local practitioner.
The initial exam
It’s a good idea to bring a list of your symptoms to your first appointment, including anything you have noticed about when the pain occurs as well as a record of any previous treatments you have tried.
To rule out vulvovaginal conditions that are known to cause pain, your doctor will take a complete history and do a pelvic exam. Samples of vaginal secretions or tissue may also be taken for testing.
During the pelvic exam, the practitioner evaluates the structure and appearance of your vulva.
Then he or she will lightly touch areas on your vulva with a cotton swab (Q-tip) to see where it’s sensitive. This test can be painful and it is important to tell the practitioner when you are experiencing severe pain.
Having a close friend or your partner with you in the exam room can make the exam easier to deal with. Having someone else present can also help you get the most out of your appointment, since it can be hard to absorb everything the doctor is telling you when you are stressed or in pain from the exam. The friend or partner can take notes so that you can read them later and think through the information.
Your doctor may recommend a number of steps to identify and eliminate possible causes of pain. These can include:
- Instructions for gentle vulvar care. For example, washing or soaking in hot water or wearing tight or synthetic clothing can cause irritation and pain, as can chemicals in soaps, detergents and sanitary napkins.
- Identifying and treating any inflammatory problem that might be present. Some common problems are yeast infections, herpes, or inflammatory vaginitis. A skin problem such as lichen planus or lichen sclerosus, or inadequate estrogen may be causing atrophy (thinning) of the vaginal walls. All of these problems are known to cause pain.
- Checking for tightness and spasm of the pelvic floor muscles, which can contribute to generalized or localized vulvodynia. Years of constipation, poor urinary patterns, or malalignment of the bones, joints and muscles of the pelvic girdle may lead to pelvic floor muscle shortening and tightening and burning pain.
- Exploring any relationship issues or sexual practices that could contribute to painful sex may also be useful. Poor sexual technique leading to inadequate arousal and lubrication may result in pain with entry. Even one or two painful experiences can trigger ongoing pelvic floor muscle tightness, which can cause pain.
- For many years, some practitioners used the term “pudendal neuralgia” instead of “vulvodynia,” believing that all cases of otherwise unexplainable vulvar pain were caused by unknown problems with the pudendal nerve (the long major nerve that connects the pelvic area to the spinal column). While it now seems unlikely that this is the only cause of vulvodynia, recently clinicians have determined that in some cases, vulvar pain is caused by compression or entrapment of the pudendal nerve. This can occur when inflammation in the joints and muscles along the nerve’s path results in scarring that presses on or traps the nerve. Various procedures have been developed to try to correct this problem. The study of pudendal entrapment is still in its infancy.
If the doctor can’t identify any clear cause of the pain or if treating the apparent cause does not bring relief, your pain will probably be diagnosed as vulvodynia. Without a clear explanation for the pain, your doctor will take steps to treat the pain itself and to help you find ways to manage it.
One of the hardest things for a patient to deal with is that a diagnosis of vulvodynia simply means that you have pain and nobody really knows why. Because no one knows what causes vulvodynia, there is no “standard” treatment or sequence of treatments. Your doctor may try several different approaches to alleviate and manage the pain. Usually it is a combination of treatments, not any one treatment, that eventually provides relief. Every patient is different. What works for one woman might not work for another.
- Local treatment of pain with a topical anesthetic ointment, such as lidocaine. This can help alleviate unprovoked pain as well as provoked pain—for instance, prior to or after intercourse.
- Oral or topical medications that work on pain through the central nervous system. There are many such medications, including tricyclic antidepressants (TCAs) like amitriptyline; selective serotonin reuptake inhibitors (SSRIs) like venlafaxine (Effexor) or duloxitine (Cymbalta); and anti-seizure medications like gabapentin (Neurontin). Different individuals respond differently to different medications. It’s not unusual for a patient to try several medications and different dosages before getting significant relief.
- Complementary and Alternative Medicine. Some patients report relief from acupuncture, physical therapy, or therapeutic massage. Others find that mind-body techniques like meditation, yoga, guided imagery, and biofeedback ease their pain or help them manage it. Your doctor may suggest involving a pain management specialist in your care to help identify alternative treatments that could work for you. Whatever alternative treatment you may try, you need to make sure the practitioner you use has experience specifically in helping vulvodynia patents. Consult your doctor for a referral. Again, it’s important to recognize that outcomes vary considerably from one patient to another.
- Experimental treatments. If all other treatments fail, some specialists recommend a vestibulectomy—that is, surgery to remove the painful tissues around the vaginal opening. However, there are still questions around the success rates for this procedure. Recent small studies have also reported some success with Botox injections. More research is needed.
- Supportive care. Vulvodynia can be a very frustrating and demoralizing disorder to deal with, not only for patients but for their partners and families. If anger, depression, or isolation is getting the best of you, it may help to talk to a counselor, attend a support group meeting, or just talk to the local support contact. If you are married or in a relationship, sex therapy or relationship counseling can help you and your partner to find positive ways to deal with the situation as a couple.
Most patients with vulvodynia do find ways to reduce and manage the pain. In some cases the pain will disappear altogether, although symptoms may recur months or years later. Researchers believe that with continued progress in studying vulvodynia, more and more cases will be traced to underlying causes that can be effectively treated.
Elizabeth Stewart, MD