What is vulvodynia and vulvular vestibulitis?

(1) Dear Alice,

I have been told that I may have Vulvodynia and am trying to find information in regards to this. Could you please elaborate? I am having trouble locating a doctor who is "up" on this and the treatment. What do you suggest?

— Grateful

Dear Alice,

I have been diagnosed with a condition called Vulvodynia and have been put on antidepressants. I hate being on these, I feel tired all day because I don't sleep well, I have lots of burning windy tummy aches, I get hot flashes, I am 36, and I feel like life is no fun anymore. I want to come off the antidepressants. Do you know of any self help ideas for vulvodynia or vestibulitus? I feel desperate for help and my doctor is not easy to talk to. I have had to give up work due to this, and don't feel able to look forward to anything in case I am ill. I hope you can help.



Dear Grateful and Stacey,

Many women experience "unexplained" pain in their vulva. For some of these women, vulvar pain is a vexing problem. Unfortunately, some are told that the pain is "all in their head" since visible symptoms are rare. Others are diagnosed with Vulvodynia or Vulvular Vestibulitis. The reality is that these are real conditions for which little information is known. It is challenging to find a health care provider with whom you feel comfortable and who is knowledgeable about these vulvar conditions. Also, while some treatments are available, they don't work for everyone. For these reasons, it is not uncommon for women who are correctly diagnosed to become frustrated and experience feelings of desperation.

Vulvodynia is not a disease, but rather a general term that defines pain throughout a woman's pelvic area. Women who are diagnosed with vulvodynia typically experience a range of symptoms, including severe irritation, rawness, burning, stabbing, or stinging sensations throughout their vulva. They often receive this diagnosis once other conditions, such as herpes, skin disorders, or bacterial infections, have been ruled out or treated. The amount and intensity of pain associated with vulvodynia is different for each woman. Some women experience pain spontaneously or only during sexual stimulation or intercourse. Other women have pain constantly.

Vulvular Vestibulitis is a subset of vulvodynia that causes inflammation or irritation at specific points in the vulvular vestibulitis (the area that surrounds the opening of the vagina). This pain can be caused by many situations, including touch or pressure caused by insertion of a tampon, intercourse, or tight clothing. In extreme circumstances, it can be difficult for a woman to walk or even sit. Sometimes women who have this condition may find small bumps or sores — the size of a grain of sand — beneath this area of skin.

Some women are diagnosed with one of these (or other similar conditions). Other women are diagnosed with both. While the cause of vulvodynia is unknown, there are a few theories. Some believe that it is caused by allergic reaction to environmental irritants, a hypersensitivity to candida or other bacteria, or high levels of oxalate crystals in the urine. Vulvodynia may be a neurotransmission problem. Pain travels a neuro-pathway much like a path in the woods, which becomes more prominent the more it is traveled. Frequently, problems that cause vulvodynia also lead to a spasm of the pelvic floor muscles. This makes sense, because the pelvic floor muscles is the largest muscle group in the body. A stimulus that causes pain in the vulva can activate a sympathetic spasm in these muscles.

Some women who have these conditions also have irritable bowel syndrome, fibromyalgia (musculoskeletal pain and fatigue disorder), interstitial cystitis (recurring discomfort or pain in the bladder, the urethra, and the surrounding pelvic region), or other autoimmune disorders (when the body can't differentiate between body tissue and the pathogens it needs to attack). There is no cure for vulvodynia, however, there are treatments that work for some women. These include taking antidepressants (which raise the brain's dopamine levels, interfering with the transmission of pain). It's important to note that antidepressants are not prescribed for vulvodynia because of patient depression, but because of how they affect neurotransmission. The dosage is discussed with your health care provider, but is often a lower dose than the therapeutic level to treat depression. Anti-convulsant medication can help raise a person's threshold of pain. Biofeedback (a highly effective treatment that helps relax the pelvic muscles) and monitoring and modifying the diet are other options. Some women have found relief through physical therapy, which can strech and relax the pelvic floor muscles.

Self-help measures for vulvodynia that may help and are non-invasive are using only 100 percent cotton underwear, and laundering with a mild soap, using an additional rinse cycle. Be alert to chemical irritants, and avoid using soap on the vulva. Rinsing your vulva with a cup of or a spray bottle filled with warm water after urination can help. Using an ice pack on the vulva can also provide temporary relief.

The National Vulvodynia Association (NVA) lists more self-help tips to alleviate symptoms and prevent further irritation. For the details on maintaining vulvar skin health when it comes to what to wear, how to launder these items, hygiene, sex, physical activities, and everyday living, visit the NVA Self-Help Tips for Vulvar Skin Care web page. For additional information and support, contact the following organizations:

National Vulvodynia Association: 1.301.299.0775

International Pelvic Pain Society

Vulvar Pain Foundation

    The good news is that there are many more researchers learning about vulvodynia and vulvular vestibulitis. The self-help tips, as well as finding a health care provider who is knowledgeable about vulvodynia, may help you find ways to cope and manage your diagnosis.

    Last updated May 25, 2015
    Originally published Nov 08, 2002

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