What is Vulvodynia? The International Consensus Conference on Vulvodynia Nomenclature

In Female Pelvic Pain, Vulvodynia by Stephanie Prendergast19 Comments

image2
By Stephanie Prendergast

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.

Readers we want to hear from you! If you have any questions  please do not hesitate to leave them in the comment section below.

And if you haven’t already, SUBSCRIBE to this blog (up top, to the right, under my photo!), so you can get weekly updates in your inbox, and follow us on Facebook and Twitter where the conversation on pelvic health is ongoing.

All my best,

Stephanie Prendergast, MPT

stephanieStephanie 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.

Comments

  1. Stephanie… Your guys’ work is invaluable!! Reading the information gave me a sense of epiphany as I have been working with lots of women with pelvic pain and realized that the variations from where the pain can arise is significantly larger than I thought!! It’s the central sensitivity associated with lifestyle, where in life a woman is, general health, surgeries, hormones, etc!! I hope your nomenclature does stick and allows all of us including the patient to adopt this info.. So many people in the medical community looks at this as a separate issue and it ‘s not! It’s the whole person! Thank you!!

    1. Author

      Hello Teo,

      Thank you!

      All my best,

      Stephanie

  2. Thank you for your work in this area. I completely agree with your comments on how inadequate the diagnosis is and how hopeless it sounds, especially at the time of diagnosis when we start researching the DX. I am so grateful for my PT and for you and others working in this area of PT.
    Thank you!

  3. On behalf of all Pelvic Floor & women’s health PTs, we salute you for your siginificant contributions into this ISSVD meeting!
    Your blog posts & studies with the rest of PHRC staff continue to educate me. Being a rural Pelvic PT & working alone is not easy but having access to all your blogs, & studies allow me to expand my critical thinking & pathways to approach patient’s clinical presentations in my daily practice. Thank you so much for sharing your expertise thru your blogs here!

    1. Author

      Annette,

      Thank you so much for your kinds words! We believe in creating and encouraging healthy a dialogue with patients and providers about the ever changing world of pelvic floor dysfunctions. If you have not yet attended our course, “Demystifying Pudendal Neuralgia As a Source of Pelvic Pain: A Physical Therapist’s Approach” you may want to consider it! It provides a wealth of information, training, and resources for therapists and providers.

      All my best,

      Stephanie

      1. Hi Stephanie,

        I have been wanting to catch this course here in the West Coast, are you having one here in our area this year? Hopefully, in Northern California?
        Please consider & let me know.
        Thank you again for all your contribution in Pelvic PT!!!

        1. Author

          Hello Annette,

          We will consider it, but our upcoming course will be in Arkansas Sep. 12-15, 2015. Our website will provide more information if your choose to attend.

          All my best,

          Stephanie

  4. Nicely reviewed! Did anyone attempt to show primacy of one subtype across duration of symptoms or over the lifespan

    Very grateful for IPPS’s contributions and your engagement in this critical area.

    1. Author

      Thank-you Frank. We are gathering the levels of evidence regarding subtypes this week. Andrew Goldstein is aiming to have the paper completed in time for the ISSD in July.

  5. Stephanie,
    Thank you for such a great summary of the consensus meeting. I have been working with vulvodynia patients for a while now. The more I learn about it, the more I realize so little we know about this fascinating complex condition. Thank you so much for your great job done at the IPPS.
    Warm regards,
    Jose “Tony” Carugno

  6. While I appreciate the effort all of you have/are putting into trying to define vulvodynia more accurately, as a patient I’d like to know what this means for me and others who suffer from these symptoms? I have given my doctor a detailed written history of the progression of my symptoms describing location types and qualities of pain. I have been through PT, biopsies and more drug therapies than I can remember, almost 6 years after onset…and I am now at the point where I am suggesting hey-what-about-this-I-saw-on-Reddit therapies to my doctor, instead of her tailoring therapies according to specific possible causations based on my history. It’s frustrating to see news like this when the quality of life of patients isn’t affected. So when will these breakthrough diagnosis refinements mean something real to your patients?

    1. Hello Christine,

      We agree that the pace in which new treatment protocols, and knowledge regarding pelvic floor dysfunctions is accepted can be frustrating. However, what we discuss in this blog already “means something very real” to patients. It means we are moving forward in the right direction, and although the larger medical community has yet to fully evolve, much progress continues to be made on a daily basis, more physical therapists are joining our ranks, and the RIGHT treatment is becoming more accessible across the globe. If you are in need of a therapist who can help you, I may be able to recommend a therapist. Where are you located?

      Best,

      Stephanie

        1. Hello Christine,

          Below are therapist recommendations in your area:

          Justice Jamie PT Dekalb IL (815) 785-5508 Creative Therapeutics
          Markett Kristen PT Orland Park IL (708) 671-1971 Flexeon Rehab
          Thatcher Judy PT, CFMT Cary IL 8474581722 Sherman Hospital
          O’Keefe Maureen PT Evergreen Park IL 6306200232 1 Trans America Plaza Dr
          Kirk Brandi PT Homer Glen IL 7083013102 Kirk Center for Healthy Living
          Florendo Judith PT Evanston IL 3123378840 Florendo Physical Therapy

          Best,

          Stephanie

  7. Do you have any PT recommendations in Cleveland, Ohio? I have been tested for many things and have been told my constant feeling of the need to urinate maybe caused by PF dysfunction. It came out of nowhere. No other significant symptoms? I am 54 and healthy. Thank you.

  8. I have been diagnosed with vulvodynia. Is it possible that this was caused by excessive “fingering”.
    This condition started right after I had this sexual affair almost 2 years ago. Did not have sex for over 20 years prior, and my pain started right after this event in 2014. Could my pudendal nerve have been damaged?

    1. Author Stephanie Prendergast says:

      It is not likely that your pudendal nerve was damaged, but it is plausible that there were vulvovaginal issues that you were unaware of until this sexual encounter. It makes sense to see a gynecologist that specializes in pelvic pain to identify vulvar atrophy or a dermatologic issue. and possibly a pelvic floor physical therapist.

Leave a Comment