What is Vulvodynia? The International Consensus Conference on Vulvodynia Nomenclature

By Stephanie Prendergast, PHRC Cofounder

What is Vulvodynia? Is it a symptom, a disease, or a syndrome? What does the term ‘Vuvlodynia’ mean to people with vulvar pain, pelvic pain specialists, medical professionals, and the community in general?

In a previous blog post I wrote about how in the pelvic pain world, diagnosis does not dictate treatment. Many pelvic pain diagnoses simply describe the location of the pain, but they do not tell us how the problem developed, what is causing it, or how to treat it. “Vulvodynia” means pain in the vulva, and I consider that to be a symptom.

On April 8th and 9th, I was honored to be one of 28 vulvoaginal experts invited to participate in the International Consensus Conference on Vulvovaginal Pain (Vulvodynia) Nomenclature (click here for the entire list of participants).The event was organized by Dr. Andrew Goldstein and ISSWSH. The motivation for a consensus meeting originated  because “there is an unmet medical need for a comprehensive, evidence-based set of vulvovaginal pain diagnoses that can be easily utilized by both expert and non-expert healthcare providers to establish diagnoses in their patients and to guide treatment.”

The Mission of the group was to develop evidence-based consensus among experts, experienced in the diagnosis, evaluation, treatment and/or research in vulvovaginal pain for women, for appropriate nomenclature and definitions of female sexual dysfunctions. These definitions must be applicable across disciplines and useful in both clinical and research settings, and to serve as the basis of ICD codes for women’s sexual health problems.

The conference began with a historical overview of current vulvar pain terminology:

“Vulvodynia has been defined by the International Society for the Study of Vulvovaginal Diseases (ISSVD) as  chronic vulvar discomfort, most often described as a burning pain, occurring in the absence of relevant visible findings or a specific, clinically identifiable, neurological disorder,”Patients can be further classified by the anatomical site of the pain (e.g. generalized vulvodynia, hemivulvodynia, clitorodynia) and also by whether pain is provoked or unprovoked.” Chronic is considered longer than 6 months.

The above definition was voted and agreed upon…..in 2003. I began working with people with pelvic pain in 2001, and I can tell you there have been tremendous advances in the management of these disorders. Reading this archaic, horrendous definition left me thinking WTF? How would I feel if I was diagnosed with Vulvodynia, and read online that it is chronic (doomed for life!), absence of relevant visible findings (I suppose it is all in my head and the fact that I am in pain is ‘irrelevant’), and that I would be ‘classified’ based on where my pain is?

I can say for sure that we do have identifiable causes, we do have visible findings, and women with vulvar pain have a treatable condition, NOT an unresolvable medical mystery.  I was grateful this conference had been organized, because patients are being thrown under the bus. Tensions were running high as we shifted into the morning lectures on possible physiological causes of vulvar pain:

1. Inflammation (David Foster, MD MPH)
2. Neuroproliferation (Jacob Borenstein, MD, MPA)
3. Hormonal (Andrew Goldstein, MD, FACOF, IF)
4. Genetic ( Nina Bohm-Starke MD, PhD)
5. Peripheral Neuropathic (Lee Dellon, MD, PhD, FACS)
6. Central Neuropathic (Melissa Farmer, PhD)
7. Musculoskeletal (me!)
8. Psychosocial (Caroline Pukall, PhD, C.Psych)
9. Systemic (Deborah Coady, MD)

Listening to the lectures on these 9 evidence-based vulvar pain subsets confirmed why I consider ‘Vulvodynia’ a symptom and not a helpful diagnosis.  I used five actual case examples to make this point that more developed nomenclature is necessary to help suffering women get appropriate treatment. The five women I described all have ‘Vulvodynia’.

Leah is 30 years old.  Her vulvar pain developed following multiple urinary tract infections that were appropriately treated with antibiotics but unfortunately led to multiple yeast infections. Her treatment plan included manual therapy to treat  high-tone pelvic floor muscles and  vulvar connective tissue restrictions. Leah also needed to work with a naturopathic doctor to get to the underlying cause of the repetitive infections. Both the musculoskeletal dysfunction, inflammation,  and the systemic infections were primary causes of Leah’s vulvar pain.

Michelle is 30 years old. Her vulvar pain developed after she was in a car accident. During the car accident her knees hit the dashboard, causing sacroiliac joint dysfunction. Because of the close relationship between the sacroiliac joint ligaments and the pudendal nerve, she subsequently developed pudendal nerve irritation which in turn caused a  high-tone pelvic floor and constant vulvar pain. Because of the pudendal nerve irritation, Michelle could not initially tolerate physical therapy. I referred her for a pudendal nerve block (peripheral neuropathic treatment), then we resumed physical therapy that included manual therapy as well as orthopedic treatment strategies for her sacroiliac joint (musculoskeletal treatment), which was a driving factor in Michelle’s case (but clearly not in Leah’s case above).

Gwen is 49 and a triathlete. Her  vulvar pain started two weeks after she started an exercise regime called Crossfit. She noticed the pain when she attempted to have intercourse. This scared her; she did a google search on ‘pain with sex’ and thought she had pudendal neuralgia. I fully expected her to have numerous trigger points and pelvic floor tone issues based on her athletic history. Instead, I discovered that her periods have been irregular and she is in peri-menopause. Upon inspection, her vulvar tissues were thin and lacking estrogen. Her musculoskeletal structures were totally normal. The vulvar pain with intercourse coincided with a change in her exercise routine, but it also coincided with resuming intercourse after a period of inactivity and perimenopause. Her treatment consisted of topical hormonal cream and she did not need physical therapy.

Michelle, who is 23 years old, always had painful periods and was using oral contraceptives to reduce her painful periods. She began to experience vulvar pain with tampon use, and for two years she experienced  vulvar pain with insertion. She then developed a Bartholin’s cyst that was surgically removed. Following this procedure, she felt daily pain at the incision site. Upon physical examination I could feel scar tissue at the surgical incision site and identified other musculoskeletal findings that were likely contributed to her provoked pain. It is plausible that androgen insufficiency from oral contraceptives was a contributing cause to the provoked vulvar pain that developed with insertion and that a neuroma secondary to surgery was contributing to the daily unprovoked pain. Her treatment involved cessation of the birth control pill, topical and systemic hormonal therapy, surgical excision of the neuroma, and physical therapy. Her case was hormonal, genetic, peripheral neuropathic, and musculoskeletal.

Barb is 53 and the mother of two children, ages 25 and 27, delivered vaginally. She underwent a complete hysterectomy and anterior vaginal wall repair for uterine and bladder prolapse. Mesh was used in this repair. Following surgery, Barb developed severe and debilitating vulvar pain. Her pain was caused by peripheral nerve irritation from the mesh and it eventually was removed. Following the removal of the mesh she underwent pharmacologic therapy for CNS hypersensitivity, pudendal nerve blocks, and physical therapy, which resulted in resolution of her symptoms.

All five women have ‘Vulvodynia’ for different reasons. And we do know what they are.

Following the physiology lectures, we heard presentations on physical examination findings and tests for women with vulvar pain. These include visual and palpation examination of the vestibule, examination of the pelvic floor muscles, histopathology, laboratory testing and psychometric evaluation.

Next, we were broken into 5 small subgroups with four objectives in mind:

1. Develop, through expert consensus, nomenclature describing vulvovaginal pain (vulvodynia) and subgroups of vulvovaginal pain.
2. Utilize the nomenclature developed to establish diagnostic criteria for vulvodynia and its subgroups.
3. Utilize the nomenclature developed to establish evidence-based treatment guidelines.
4. Utilize the nomenclature developed to develop suggested areas of future research.

On day two, one leader from each breakout group presented their group’s suggested nomenclature; there were five options to chose from. 28 of us voted and one group’s option  was chosen. We then spent the rest of the day in animated, thoughtful, heated and intense  discussions, debating what the evidence does and does not tell us, how nomenclature can support both researchers and clinicians, and how to support nonexpert and expert clinicians and most importantly, women suffering from vulvar pain.

At the 13th hour we did reach a consensus!

1. We agreed to change the title of Vulvar pain classification from ‘Chronic Vulvodynia’ to ‘Persistent Vulvar Pain’.
2. Evidence supports 7 subclassifications of vulvar pain
   1. Infectious
   2. Inflammatory
   3. Neoplastic
   4. Neurological
   5. Trauma
   6. Iatrogenic
   7. Hormonal deficiencies
3. Vulvar pain can exist without an identifiable cause
4. Vulvar pain can be described as localized, provoked, by onset (primary or secondary) or by temporal patterns (intermittent, persistent, constant, immediate, delayed)
5. Vulvar pain is associated with certain factors (IMPORTANT: there was not enough evidence to support cause or effect, we can state we know vulvar pain can exist with the following impairments)
   1. Neuoproliferation
   2. Musculoskeletal
   3. Psychosocial
   4. Genetic
   5. Hormonal
   6. Neurological
   7. Peripheral neurologic
   8. Central neurologic
   9. Comorbid pain syndromes

This classification has the potential for tremendous improvement in clinical care for our suffering patients. I was honored to be part of it and to see how far we have come in 15 years, we just need our nomenclature to show it.

The results of our meeting are currently being  written up and submitted to the International Pelvic Pain Society, The International Society for the Study of Vulvovaginal Disease, and The National Vulvodynia Association. We are hoping that these three societies will adopt the new nomenclature and that they will become part of the ICD coding.

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All my best,

Stephanie Prendergast, MPT

Stephanie grew up in South Jersey. She received her bachelor’s degree in exercise physiology from Rutgers University and her master’s in physical therapy at the Medical College of Pennsylvania and Hahnemann University in Philadelphia. For balance, Steph turns to yoga, music, and her calm and loving King Charles Cavalier Spaniel, Abbie (Abbie is a daily fixture at PHRC Los Angeles). For adventure, she gets her fix from scuba diving and global travel. One of her most recent adventures took her to China.