When Sex Hurts: Moving From Ow! to Wow!

The noblest pleasure is the joy of understanding.” -Leonardo daVinci

When you think of the word sex, do you associate it with pleasure? What if you’re first association was with pain, burning, rawness, and dread? For women with neuroproliferative vestibulodynia, this is the case.

When you break down the two words, neuroproliferative vestibulodynia, you gain great insight into their meaning:
Neuro – pertaining to nerves
Proliferative – an increase in number of
Vestibulo – of the vestibule, the area just outside of the vaginal opening
Dynia – pain

These definitions point out that neuroproliferative vestibulodynia is pain in the vestibule due to an overabundance of nerves. In fact, there are up to ten times as many nerve endings in the vestibule of women with neuroproliferative vestibulodynia when compared to women without this condition. These nerve endings, called c-afferent nociceptors, are responsible for the sensations of cutting, burning, and rawness.

Women with neuroproliferative vestibulodynia are often embarrassed, ashamed, and confused by the pain they’re experiencing. They expect to feel pleasurable sensations only to be plagued by throbbing and searing pain that can go on for months or years before they report it to a physician. Many of these patients, when they do work up the courage to report the pain, are either told it’s ‘only in their head’ or are treated for infections that are completely unrelated to the real cause of their suffering.

My goal is to get this much-need information out there, to give women with neuroproliferative vestibulodynia the pleasure of understanding, as daVinci so eloquently stated, why they are experiencing pain in their most intimate parts so that they can be properly treated and then experience sexual pleasure that they desire and deserve.

Neuroproliferative vestibulodynia was first recognized by doctors in Sweden in 1998. They distinguished two main types:

  1. Congenital Neuroproliferative Vestibulodynia (CNV). A woman with CNV has had pain since her very first attempt at inserting a tampon, her first visit to the gynecologist, or her first attempt at penetration during intercourse. These women are born with an increased density of c-afferent nociceptors in the vestibule, and 60% have a tender belly button. The only effective treatment for women with congenital neuroproliferative vestibulodynia is a vulvar vestibulectomy in which a thin area of skin and nerves is removed from the vestibule to decrease the number of pain receptors. Click here to read one woman’s experience before, during, and after her vulvar vestibulectomy.
  2. Acquired Neuroproliferative Vestibulodynia (ANV). A woman with ANV has had pain-free tampon use, speculum use during a gynecology exam, or penetration during intercourse but is now experiencing pain with these activities. This is seen in women with chronic yeast infections, hives, and sensitive skin who thus develop too many nerve receptors. Treatment includes various creams and medications that attenuate the pain response; however, when conservative measures are ineffective, a vestibulectomy is indicated.

My hope is that by increasing the awareness of neuroproliferative vestibulodynia women will experience “the joy of understanding” what is going on with their bodies and seek out treatment by a doctor familiar with this distressing condition. To find a provider near you, please go to the International Society for the Study of Women’s Sexual Health’s website. I am in the New Orleans metro area and treat people from this quadrant of the United States. Please let me know if I can be of any help.

Dr. Katherine Williams, MD, FACOG, IF


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