Rachel* was twenty-two and a virgin when she married her college sweetheart. She was looking forward with great anticipation to her honeymoon, but sexual intimacy turned out to be extremely painful. It took two months before she and her husband were able to complete the act. Her previous gynecological exams had been horribly painful as well, but her nurse practitioner told her that sexual activity would help. Thankfully, she had a very understanding husband who was kind and patient, but as time went on, the symptoms did not improve. Finally, Rachel sought the help of a gynecologist. “The appointment was humiliating. I was crying in pain as she did the internal. The only thing I can compare it to is being cut with a knife without the benefit of any anesthesia. The doctor asked me if I had been raped (which I had not been) and gave me a referral to a psychiatrist which I promptly threw in the trash. I knew the pain was real. I was mortified and didn't know where else to turn.”

Two years later, Rachel sought the help of another gynecologist who had been recommended by friends. He was kinder, although he suggested that these kind of problems are normally worked out at age 17. He, too, felt that the issue was probably psychological but in the event that there was some physical component, suggested that having children would help. Two children and 8 years later, Rachel states that sex did improve after having children, although there are still times when it hurts very badly. Internal exams and pap tests are a nightmare, with unsympathetic doctors who simply tell her to “relax” and get upset that she is crying.

A chance reading of an article by Jane Brody which appeared in the New York Times (January 21, 2008) led her to the National Vulvodynia Association website (www.nva.org). “It was so good to find out that what I experienced had a name, that I wasn't alone. The particular type of pain I have is called vulvar vestibulitis syndrome which exists only inside the vestibule when pressure (from sexual intercourse, tampon use, or internal exams) is applied. I had always felt like a freak, that it was just me. I am bringing this information with me to my next doctor's appointment. It may not make the exam any less painful, but they can't tell me it is in my head or that it is my fault any more.”

No, Rachel is not alone. In fact, according to Elizabeth Gunther Stewart, MD, of Brigham and Women's Hospital in Boston, “upwards of 14 million women may suffer from vulvodynia during their lifetime.” Vulvodynia is a real disease and can manifest itself in many different ways. The International Society for the Study of Vulvovaginal Disease (ISSVD) defines vulvodynia as “chronic vulvar discomfort or pain, characterized by burning, stinging, irritation or rawness of the female genitalia in cases in which there is no infection or skin disease of the vulva or vagina causing these symptoms.” Vulvodynia can have a profound effect on a woman's quality of life. Some women not only experience pain with sexual intercourse, but simply sitting at a desk or wearing certain types of clothing.

Donna* has lived with vulvodynia for eighteen years. For the first fifteen years, it was only during sexual intercourse. Three years ago, it became much worse. “Sitting became excruciating, wearing pants and undergarments was very painful.” A chance conversation with a friend who was also a vulvodynia sufferer changed her life. She finally had a referral to a doctor who understood her condition and she became a support contact in her area for the National Vulvodynia Association. “I wanted to give other women the same gift my friend gave me. I find great strength by helping other women!”

What can you do if you suspect you may be suffering from vulvodynia? First of all, know that you are not alone. The pain is real. According to an National Institute of Health-funded Harvard study, almost 16% of women suffer from vulvodynia at some point in their lives. Visit your doctor with information about this disease in hand. To offer a clear diagnosis and make sure that there is no other problem, a doctor should examine the vulva, vagina and vaginal secretions. They should check for infection so that can be ruled out as a cause of problems or treated if an infection is found. He or she may also perform a “q-tip” test, touching areas of the vulva and vestibule to see which sections are most sensitive.

Right now, it is not known what causes vulvodynia. According to www.nva.org, “the medical community speculates that potential causes of the condition may be:

an injury to, or irritation of, the nerves that innervate the vulva an abnormal response of different cells in the vulva to environmental factors (such as infection or trauma) genetic factors associated with susceptibility to chronic vestibular inflammation a localized hypersensitivity to candida (yeast) spasms of the muscles that support the pelvic organs”

There is also no cure for this painful disease. Some treatments that show promise include drug therapy to block pain signals. In some cases, physical therapy and biofeedback have been helpful, and in those who suffer from vulvar vestibulitis, surgery to remove the painful tissue may be recommended. However, there are some things sufferers can do to help minimize symptoms:

Clothing and Laundry: Wear all-white cotton underwear. Do not wear pantyhose (wear thigh high or knee high hose instead). Wear loose-fitting pants or skirts. Remove wet bathing suits and exercise clothing promptly. Use dermatologically approved detergent such as Purex or Clear. Double-rinse underwear and any other clothing that comes into contact with the vulva. Do not use fabric softener on undergarments.

Hygiene: Use soft, white, unscented toilet paper. Use lukewarm or cool sitz baths to relieve burning and irritation. Avoid getting shampoo on the vulvar area. Do not use bubble bath, feminine hygiene products, or any perfumed creams or soaps. Wash the vulva with cool to lukewarm water only. Rinse the vulva with water after urination. Urinate before the bladder is full. Prevent constipation by adding fiber to your diet (if necessary, use a psyllium product such as Metamucil) and drinking at least 8 glasses of water daily. Use 100% cotton menstrual pads and tampons.

Sexual intercourse: Use a lubricant that is water soluble, e.g., Astroglide. Ask your physician for a prescription for a topical anesthestic, e.g., Lidocaine gel 5%. (This may sting for the first 3-5 minutes after application.) Apply ice or a frozen blue gel pack (lunch box size) wrapped in one layer of a hand towel to relieve burning after intercourse. Urinate (to prevent infection) and rinse vulva with cool water after sexual intercourse. Do not use contraceptive creams or spermicides.

Physical Activities: Avoid exercises that put direct pressure on the vulva such as bicycle riding and horseback riding. Limit intense exercises that create a lot of friction in the vulvar area (try lower intensity exercises such as walking). Use a frozen gel pack wrapped in a towel to relieve symptoms after exercise. Enroll in an exercise class such as yoga to learn stretching and relaxation exercise. Don't swim in highly chlorinated pools. Avoid the use of hot tubs. Everyday Living Use a foam rubber donut for long periods of sitting. If you must sit all day at work, try to intersperse periods of standing (e.g. rearrange your office so that you can stand while you speak on the phone). Learn some relaxation techniques to do during the day (from www.nva.org)

It is important to help educate the medical community about this disease as well as to stop the silence and embarrassment that surrounds it. Christin Veasley, a young patient advocate describes the agony of living with vulvodynia. “Women are too embarrassed to reveal they have the condition, so they suffer alone. Feeling that you can't talk about it adds to the suffering,” she says.

*Names have been changed.

About the Author

Visit Patrice Fagnant-MacArthur's blogs at spiritualwomanthoughts.blogspot.com and momentofbeauty.blogspot.com

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