PELVIC PAIN EDUCATION PROGRAM:
VULVODYNIA
FAQS
Frequently Asked Questions
WHAT ARE THE MAIN SYMPTOMS OF VULVODYNIA?
Women with vulvodynia may feel a burning, stinging, irritation, or rawness in the vaginal area. Sometimes there is throbbing, swelling and redness at the vaginal entrance. The pain can happen sometimes, or all the time and it can happen with light touch or without provocation. The pain may be felt all over the vaginal area or just in one specific spot.
WHAT IS THE LONG-TERM RESULT OF LIVING WITH UNTREATED VULVODYNIA?
Many women with vulvodynia may also have problems sleeping and feeling tired. It can also cause problems with memory, learning or concentration and trouble with physical activity, social, personal and sexual relationships. Women with vulvodynia many times live isolated lives because they are not helped by their peers and clinicians. This isolation and lack of medical care can contribute to more severe pain.
WHAT IS THE DIFFERENCE BETWEEN VULVODYNIA AND VULVAR VESTIBULITIS?
Vulvodynia is a general term used to describe widespread vulvar pain, i.e. pain throughout the entire vulva. Vulvar vestibulitis refers to a syndrome where the pain is localized to the vestibule. Imagining the vaginal opening is the face of a clock, the vestibule is a thin strip of tissue from 10 to 11 o'clock. The bottom part of this tissue is also known as the hymen.
IF I HAVE VULVODYNIA AND I ALSO URINATE FREQUENTLY, WHAT DOES THAT MEAN?
If you experience urinary frequency along with your vulvodynia you may also have pelvic muscle dysfunction. This condition is characterized by muscle spasms that lead to increased urge to urinate. Sometimes women with vulvodynia may also have Interstitial Cystitis / Bladder Pain Syndrome. Regardless of the cause, urinary frequency is treated with pelvic physical therapy and bladder neuromodulation. Before starting these therapies your clinician will make sure you do not have a bladder infection.
WHAT ARE THE BEST TREATMENTS FOR VULVODYNIA?
Researchers are still learning a lot about vulvodynia, however, research shows that the most effective treatments for vulvodynia are pelvic physical therapy combined with cognitive behavioral therapy to address fear of pain and emotional distress that comes from living in pain. Other treatments are either not effective, or experimental which means that we do not know if they work yet. Vulvodynia pain is also worsened by factors in your environment, so self-help strategies such as managing stress, modified activity, and careful vulvar care are also helpful.
SHOULD I HAVE SURGERY FOR VULVODYNIA?
The only surgery available is called a vestibulectomy. It is recommended when a clinician can determine that the pain is localized to the vestibule (a very specific area of the vulva). Surgery must be performed by a surgeon with expertise in vestibulectomy. Recovery can take as long as 4-8 weeks and often pelvic physical therapy and cognitive behavioral therapy are still needed. Furthermore, duration of pain relief varies; vestibulectomy is rarely a cure for the pain.
WHAT ARE THE MAIN SYMPTOMS OF VULVODYNIA?
Women with vulvodynia may feel a burning, stinging, irritation, or rawness in the vaginal area. Sometimes there is throbbing, swelling and redness at the vaginal entrance. The pain can happen sometimes, or all the time and it can happen with light touch or without provocation. The pain may be felt all over the vaginal area or just in one specific spot.
WHAT TYPES OF ACTIVITIES SHOULD I AVOID IF I HAVE VULVODYNIA?
Generally, staying active helps manage pain. However, certain activities, such as prolonged bicycling, which puts a lot of pressure or friction on the vulva, should be avoided. You should also avoid sitting on a hard surface for long periods of time. If you experience pain with intercourse (sex), you should use lubrication, or avoid being sexually active until you receive treatment.
WHO SHOULD I SEE IF I HAVE VULVAR PAIN OR VULVODYNIA?
Your primary clinicians can help rule out any vaginal infections or lesions that are easy to identify and treat. However, if you continue to have pain, you should seed a vulvodynia specialist (many times this person is a gynecologist) who has access to a network of specialists including a pelvic physical therapist, and a behavioral therapist. Visit the National Vulvodynia Association or the International Pelvic Pain Society website to find a pain specialist in your area.