What is vulvodynia and vulvular vestibulitis?

Originally Published: November 8, 2002 - Last Updated / Reviewed On: July 1, 2008
Share this

(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


(2)
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.

Love,

Stacey

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:

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.

Alice

November 28, 2007

21372
To the reader:

I was diagnosed with vestibulitis. Great, I had a diagnosis. Now, what to do! I kept surfing the net and reading. I finally saw some interesting information on physical therapy....

To the reader:

I was diagnosed with vestibulitis. Great, I had a diagnosis. Now, what to do! I kept surfing the net and reading. I finally saw some interesting information on physical therapy.

Turns out my muscles were too strong. In fact my pelvic muscles were spasming because they were too tight. The pain around the vestibule was lactic acid build up. You just gotta work out the "crinklies" by rubbing them out. Like a sore muscles. The awesome physical therapist told me that the muscles along my pelvic floor which contain my vagina, urethra and my anus — were contracted and I had knots in my muscles like you get anywhere else but down there it has a greater pain effect because of all the stuff down there.

She used her hands to go inside my vagina and work out the muscles down there. It hurt like hell when she was doing it but it worked. I felt results in about 4 sessions. I haven't been back. I should probably keep going semi-regularly just to keep my body stretched but the pain went away and I stopped. Check out physical therapy resources in your area for people who specialize in pelvic floor disorders. Get yourself an anatomy book and take a look at the muscles so you can understand what I'm talking about yourself. Hope that helps.

October 22, 2007

21318
Alice,

Thank you so much for writing about vulvodynia and vulvar vestibulitis! I've experienced vaginal pain ever since the age of 13, and have just been correctly diagnosed with VVS now at the...

Alice,

Thank you so much for writing about vulvodynia and vulvar vestibulitis! I've experienced vaginal pain ever since the age of 13, and have just been correctly diagnosed with VVS now at the age of 20. Doctors kept telling me it was all in my head, prescribed yeast creams when I had no infection, told me to "stretch out", and even suggested it was my hatred for my very kind, understanding sexual partner manifesting as pain!

Thankfully, I called around and found a doctor who is experienced, and just one week ago had a surgery called a vestibulectomy, in which the hymen and attached skin is removed and the internal vaginal tube advanced and sewn outside to cover the defect. The cure rates are good, around 90%, and I feel confident this is the solution I've been looking for. Please keep doing what you are to get people aware, and to assure women suffering that there is treatment. Rock on!

February 7, 2003

20469
Dear Alice, Thank you for having a reply on this condition! I have had 5 pelvic exams in about 4 months and finally on the fifth try, the doctor gave me an answer to my problems. The other doctors...
Dear Alice, Thank you for having a reply on this condition! I have had 5 pelvic exams in about 4 months and finally on the fifth try, the doctor gave me an answer to my problems. The other doctors tried yeast infection medications and just told me to stop having sex for 2 weeks. I'm on an antidepressant called amitriptylin (elavil) now, and after 4 days, I'm already feeling a little better. Even though the antidepressant isn't a cure for the condition, it usually stops the pain after 6 months and it doesn't come back. I wish all doctors knew about this, because it is a really frightening feeling to not know what is wrong, and to think it might last forever. I don't want anyone to have to worry for as long as I did. Thanks again!