Savvy womens Magazine

Vulvodynia: When Love Hurts

By Anika Fajardo

The candles are lit, the kids are in bed—asleep!—and you’re wearing that expensive babydoll from last Valentine’s Day. Nothing could get you more in the mood, especially after the two glasses of wine you had at dinner.

But, instead of being ready for a night of passion, you’re dreading it all. Why? Because love hurts—literally. The very thought of touch, much less sex, makes you shiver with pain. You have given up tampons and have resorted to wearing loose pants and long skirts. Your very feminine identity may be in jeopardy because of your lack of interest in anything that irritates that area between your legs. You’ve been to the doctors, you’ve treated for yeast, you’ve been tested for STDs. Nothing. Your husband can’t understand what’s wrong, and he’s running out of patience.

You could be suffering from a disorder called vulvodynia. Vulvodynia is, simply, pain of the vulva.

The what? Okay, let’s get back to seventh grade health class for a moment: the vulva is the outside of your vagina, the fatty folds of skin. It is this area that is primarily affected by vulvodynia. Sex, tampons, even sitting or wearing tight jeans can all cause excruciating pain for women with the disorder.

It sounds like a strange and rare disease, but vulvodynia affects over six million women from all ethnicities and age groups. Although it wasn’t until the 1980’s that this disease was finally recognized as a true disorder and not just something “in her head,” the symptoms were first reported as far back as the 1800’s. Most women don’t talk about this embarrassing condition, and if they do they are often dismissed.

LOVE HURTS, BUT DO I HAVE THIS THING?

After all, many things can cause pain with intercourse—even a particularly zealous lover. Vulvodynia, however, usually affects a woman’s life beyond the bedroom.

Signs and symptoms:

  • Chronic vulvar discomfort (pain, burning, stinging, rawness)
  • The appearance of the vulvar area is generally normal despite the presence of pain
  • Symptoms similar to infections (such as yeast or vaginosis), but no sign of infection is present
  • Pain and discomfort may be constant or intermittent
  • Pain may have a sudden onset or may have been present since puberty

Causes

The cause of vulvodynia is unknown, although there is no evidence that it is the result of a sexually transmitted disease. It is also not caused by sexual abuse, although trauma can be a mitigating factor.

  • Injury or irritation of the nerves of the vulvar area
  • Hypersensitivity to yeast
  • Spasms of the pelvic muscles
  • Genetics
  • Abnormal response to infection or trauma
 

Getting Diagnosed

In a male-dominated medical world, women need to be vigilant to get a proper diagnosis. Many women may see up to three doctors before receiving even a diagnosis, and up to 40% of women remain undiagnosed. If you suspect you have vulvodynia, pursue treatment with a doctor who believes you. Many doctors attribute the signs and symptoms to sexual dysfunction or anxiety, depression or other mood or relationship disorders.

  • Vulvodynia is a diagnosis of exclusion (that is, they’re pretty sure nothing else is wrong with you)
  • Most frequently, a doctor will perform a “q-tip test,” in which he or she will touch the area with a cotton swab. Patients with the disorder will react strongly to very little stimulus.
  • A biopsy of the skin may be performed.

OKAY, SO MAYBE I DO. NOW WHAT?

Just because you have a disease that currently has no cure, you can get help. Keep in mind, though, different women respond differently to different treatments. Some commons practices:

  • Eliminate all irritants (soaps, detergents, lubricants, etc.)
  • Keep yeast under control, including possible diet modifications
  • Topical treatments such as local anesthetics (like lidocaine) or estrogen cream
  • Medications such as tricyclic antidepressants or anticonvulsants (these work on the nerve and muscle functions)
  • Pelvic floor therapy and physical therapy
  • Surgery

While all of these treatments address the physical pain of vulvodynia, the disorder often has an emotional and mental dimension as well. A woman may need a little help getting “back in the saddle” even once her pain has been alleviated. Counselors, sex therapists and medications are all options to help women cope with the havoc left behind by this disease.

WHERE DO I GET HELP?

There are a number of resources out there to seek help. For many women, just knowing that the strange symptoms they’ve been experiencing have a name can be comforting.

Websites:

NVA: National Vulvodynia Association
The NVA was formed in 1994 by five vulvodynia patients. The organization now provides resources for patients, information for physicians, as well as advocacy for research and awareness. Their website includes contact information to find local support groups and physicians in your area.

NIH: National Institutes of Health
The NIH and the NVA launched a national vulvodynia awareness campaign in 2007.

International Society for the Study of the Vulvovaginal Disease
Promotes international communication among practitioners. Hosts conferences for medical professionals.

Books:

The Vulvodynia Survival Guide by Howard Glazer, PhD
The only book that specifically addresses vulvodynia.

The V Book by Elizabeth Gunther Steward, MD
A complete owner’s manual for all things gynecological.

Headache in the Pelvis by David Wise, PhD and Rodney Anderson, MD
Addresses a variety of male and female disorders that originate in the pelvic area.

The Camera My Mother Gave Me by Susanna Kaysen
Author of Girl, Interrupted, Kaysen writes this memoir of her year in pain.

SHOOT ME NOW!

If this all sounds like too much, take heart.

Remember that lovely scene with the candles and the kids asleep? Five years ago that scenario would have incapacitated me with fear. Now, after over five years of struggling with vulvodynia and seeking a variety of treatments, I can approach such an evening with pleasant anticipation instead of dread. The addition of a supportive husband and excellent medical care has allowed me to live a normal life.

It’s never too late to take your own physical and sexual health seriously. After all, love shouldn’t hurt.

About the Author:
Anika Fajardo has recently completed a novel, THE V WORD, which explores a single woman’s struggles with vulvodynia as she looks for love. Also see: www.eatingcrepes.com