Helping women with chronic illnesses

Endometriosis Blog: Vulvodynia And Vestibulitis, Launch Of Polish Website About Vulvodynia

Today’s post is about vulvodynia.

For those who are unfamiliar with vulvodynia, I thought I’d start with a definition of it from the National Vulvodynia Association:

About Vulvodynia: What is Vulvodynia?

The International Society for the Study of Vulvovaginal Disease (ISSVD) defines Vulvodynia as chronic vulvar discomfort or pain, characterized by burning, stinging, irritation or rawness of the female genitalia in cases in which there is no infection or skin disease of the vulva or vagina causing these symptoms. Burning sensations are the most common, but the type and severity of symptoms are highly individualized. Pain may be constant or intermittent, localized or diffuse.

Vulvodynia has been classified into the following subtypes:

Generalized (or dysesthetic) Vulvodynia

Generalized Vulvodynia symptoms may be diffuse or in different areas at different times. Pain may be present in the labia majora, labia minora, and/or the vestibule (see vulvar anatomy). Some women experience pain in the clitoris, mons pubis, perineum and/or the inner thighs. The pain may be constant or intermittent. Symptoms are not necessarily caused by touch or pressure to the vulva, i.e., with intercourse or bicycle riding, but these activities often exacerbate the symptoms.

Vulvar Vestibulitis Syndrome (also known as vestibulodynia)–

Women with VVS have pain only in the vestibule, and only during or after touch or pressure is applied. Burning sensations are the most common symptom and may be experienced with some or all of the following: sexual intercourse, tampon insertion, gynecologic examination, bicycle riding, and wearing tight pants.

There are several other conditions that cause chronic vulvar pain and may coexist with Vulvodynia. The most common of these are listed below:

Cyclic Vulvovaginitis–

Women with cyclic vulvovaginitis have recurrent burning and itching symptoms at the same stage of the menstrual cycle. Many have cyclical bouts of yeast infections and some have other causes for their symptoms.

Vulvar Dermatoses–

There are many dermatologic conditions that may cause pain in the vulva. The most common include: allergic or contact dermatitis, lichen sclerosus, lichen simplex chronicus and lichen planus. These conditions may cause symptoms of itching and burning. Scratching the vulva and overusing topical medications may inflame the tissue, causing swelling and additional pain.

Vulvodynia, as with most chronic pain conditions, can have a profound impact on a woman’s quality of life. It typically affects her ability to engage in sexual activity and may interfere with daily functioning, e.g., sitting at a desk, engaging in physical exercise, and participating in social activities. These limitations can negatively affect self-image and lead to depression.


National Vulvodynia Association (NVA) is an educational, nonprofit organization founded to disseminate information on vulvodynia. The NVA recommends that you consult your own health care practitioner to determine which course of treatment or medication is appropriate for you.

Last updated September 26, 2008

Many of my local endometriosis support group members have been diagnosed with either vulvodynia or vestibulitis. I myself was initially diagnosed with vestibulitis by a pelvic pain specialist who treats many women with this condition. I was then referred to a second pelvic pain specialist who also specializes in pelvic pain and vulvar pain. He said that I actually have vulvodynia. (So it all boils down to which specialist I want to believe… but I have one or the other).

I recently contacted Alexandra Carmichael of CureTogether, a medical research organization studying vulvodynia. I asked her if she had any research regarding any connections between vulvodynia and other conditions such as endometriosis, fibromyalgia, interstitial cystitis, etc.

She sent me a very interesting article:

This fascinating article “Assessment of vulvodynia symptoms in a sample of U.S. women: a prevalence survey with a nested case control study” by Lauren D. Arnold, PhD, MPH*; Gloria A. Bachmann, MD; Raymond Rosen, PhD; George G. Rhoads, MD, MPH from the American Journal of Obstetrics and Gynecology said, in part:

RESULTS: Current vulvar pain of at least 6 months duration was reported by 3.8% of respondents, with a 9.9% lifetime prevalence. Forty five percent of women with pain reported an adverse effect on their sexual life and 27% an adverse effect on their lifestyle. Cases more frequently reported repeated urinary tract infections (OR, 6.15; 95% CI, 3.51-10.77) and yeast infections (OR, 4.24; 95% CI, 2.47-7.28). Associations existed with chronic fatigue syndrome (OR, 2.78; 95% CI, 1.33-6.19), fibromyalgia (OR, 2.15; 95% CI, 1.06-4.36), depression (OR, 2.99; 95% CI, 1.87-4.80), and irritable bowel syndrome (OR, 1.86; 95% CI, 1.07-3.23).

The article also said:

Current literature supports associations between vulvodynia and fibromyalgia, chronic fatigue syndrome, pain with first tampon use, yeast infections, recurrent vulvovaginal infections, irritable bowel syndrome, interstitial cystitis, and oral contraceptive use.

The article referenced above is in a .PDF file.


Launch of Polish website on vulvodynia:


Recently, I was contacted by Mikolaj Czyz, a co-author of the very first website about vulvodynia in Polish. This new website is promoting awareness about vulvodynia… a “completely unknown and/or neglected issue” in Poland.

I’ll include two links (below) to their site about vulvodynia. The first is written in Polish. The second link is the same website translated into English. (The English translation isn’t word for word and some words didn’t translate through but the main idea is apparent).

This site has some very interesting information including an interview with Dr. Ines Ehmer of Germany and an interview with Mr. Marek Jantos, a psychologist dealing with chronic pain, including vulvodynia, and the author of several studies on it.

Vulvodynia in Poland: Polish version of vulvodynia awareness site

Vulvodynia in Poland: English version of vulvodynia awareness site listed above

According to Mikolaj Czyz the vulvodynia treatment options are limited in Europe and the U.S. has more treatments available to vulvodynia patients. Mikolaj Czyz is working to create awareness of vulvodynia in Poland. (See right sidebar for icon that links to the Polish version of the site).

Related links (previous posts that have mentioned vulvodynia):

Monday, September 22, 2008 Endometriosis Blog: Interstitial Cystitis & Endometriosis

Monday, August 11, 2008 Endometriosis Blog: Check Out Newly-Added Co-Existing Illness/Chronic Illness Links in “Frequently Visited Sites” At Bottom Of Homepage!!!

Friday, August 8, 2008 Endometriosis Blog: SEVENTH Anniversary Of My Local Endometriosis Support Group!!!

Tuesday, July 22, 2008 Endometriosis Patient Survives Yet Another Annual Exam Without Perishing On The Table 🙂 🙂

Tuesday, July 15, 2008 Endo News Flash!! An ENDOMETRIOSIS RESEARCH ORGANIZATION called CureTogether Launches On JULY 15, 2008!!!

Saturday, June 21, 2008 Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses

Another resource readers may find helpful is the International Pelvic Pain Society.

This article was posted by Jeanne via “Jeanne’s Endo Blog” at

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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Reading: Endometriosis Blog: Vulvodynia And Vestibulitis, Launch Of Polish Website About Vulvodynia


1 Alexandra Carmichael { 10.12.08 at 7:53 pm }

Another great post, Jeanne!! Thank you so much for spreading the word about vulvodynia. Your efforts are incredible.
Have a wonderful day,

2 Jeanne { 10.12.08 at 8:00 pm }


Thank you! I have been meaning to write a post specifically about vulvodynia (rather than just mentioning it in passing like I have previously). The email from Mikolaj Czyz ( “lit a fire under me” and I finally did it. 🙂

Have a fantastic day!


3 Mckay K { 10.13.08 at 1:12 pm }

I often say I have had everything. I am happy to say; “I have not had this painful illness”. I am sorry that you are unable to say the same.

Jeanne I have not heard of Vulvodynia and Vestibulitis. Thank you for bringing their existence out into the open.

I am sure many women suffer silently and alone.

4 Jeanne { 10.13.08 at 4:14 pm }

Mckay k,

I’m happy that you can’t add this to your list of illnesses.

I hadn’t heard of it until a few years back… from endometriosis support group members who had been diagnosed with it.

Then I got diagnosed with it too. I look back now and I definitely had symptoms long (years) before I started the local endometriosis support group. I just didn’t have a name for it.

Sometimes when people have so many different illnesses going on at once, I think it’s easy to attribute symptoms of one illness to another incorrectly.

I have mistakenly lumped symptoms of one illness in with another prior to getting diagnosed properly because so many of my illnesses affect the same general area of the body.

With vulvodynia/vestibulitis, many women go undiagnosed simply because there are no doctors near where they live to even know how to diagnose it!

This is a real shame since it’s actually quite prevalent, from what I’ve read. I think this is one of those very under diagnosed conditions.

All I know is that out of roughly 40 women in my local endometriosis support group, I knew of 5 or 6 who had been offically diagnosed with vulvodynia/vestibulitis and there were probably other women who had it but didn’t have a diagnosis yet.

I am absolutely sure many women suffer silently and alone.


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