Health Organization for Pudendal Education

Treatment Study for Women with Vaginal Discomfort or Pain with Intercourse

If you are a woman (age 21 or older) who suffers from vulvo-vaginal discomfort/pain or pain with intercourse, you may be eligible to participate in a study that tracks women as they receive medical treatment to determine how effective that treatment is, as well as the factors that can predict treatment success.

One in four women of all ages and ethnicities suffer from vulvodynia over the course of their lives. Because the condition is rarely discussed and many doctors don’t know about it, many women feel alone and isolated, unaware that help is available for them! Women with vulvodynia experience discomfort/pain (burning, stinging, raw, sharp, knife-like) in the vulva (the genital area surrounding the opening of the vagina), as well as discomfort/pain with intercourse, tampon insertion or simply sitting. They oftentimes suffer from other pain conditions such as fibromyalgia, chronic fatigue syndrome, painful bladder syndrome, irritable bowel syndrome and temporomandibular disorders (TMD).

The National Vulvodynia Treatment Outcomes Registry is the first national multi-site study investigating the effectiveness of therapies used to treat vulvodynia. Over the next seven months, women age 21 and older will be able to participate in this important study. Registry investigators collect a wealth of neurological, infectious, immunological and genetic data from participants at several time points after initiating treatment - all of which will be correlated to the effectiveness of different vulvodynia therapies. This study will not only lead to the identification of factors that can predict treatment effectiveness, but will help us understand the underlying mechanisms associated with different vulvodynia subtypes. Participation is voluntary, does not include any experimentation, does not change women's treatment recommendations, and does not provide free medical care.

Registry sites are currently located in: Arkansas (Little Rock), California (Los Angeles), Colorado (Denver), Florida (Orlando), Maryland (Annapolis), Ohio (Akron) and Washington DC.

To participate or for more information, please contact Registry Coordinator Ms. Katy Capote by phone (407-303-2721) or e-mail (katerina.capote@flhosp.org).

I do hope that you get a good reponce. I suppose many of us (sorry guys ) would be under the umbrella diagnosis vulvodynia
as explained in wikipedia

Vulvodynia is a chronic pain syndrome that affects the vulvar area and occurs without an identifiable cause or visible pathology[1] categorized in the ICD-9 group 625—specifically ICD-9 625.7, which is for pain and other disorders of the female genital organs.[2] It refers to pain of the vulva unexplained by vulvar or vaginal infection or skin disease.[3]
The term "vulvodynia" simply refers to "vulvar pain", and does not imply a specific cause

Although many of us have gone that step further and have been given a more defined diagnosis. I see that you are doing neurological tests within the study too. It would be great to get feed back from the results when you have completed the study.
Thanks for this.
Helen

I think the idea of a registry is great and have sent an e-mail to my state's coordinator in the hopes of participating. I was dx'd with vulvodynia a few weeks ago but suspect PN. The GYN who diagnosed me knows nothing about PN so he basically diagnosed me based on his limited knowledge base. I bought the "V" Book by Dr. Elizabeth Stewart from Harvard last week to learn more about my diagnosis.

http://www.amazon.com/dp/0553381148/?ta ... jdfvwtbh_b

In it she states that vestibulodynia (a type of vulvodynia) is cased by irritated pudendal nerves and vulvodynia is caused by damaged pudendal nerves. That information just reinforced my suspicions and is leading me down the path to get a more accurate diagnosis.

I think you are so right to do this Butterfly. The thing that worries me is that some people would settle for a vulvodynia diagnosis, which is an umbrella diagnosis after all. As wikipedia explains Vulvodynia is a chronic pain syndrome that affects the vulvar area and occurs without an identifiable cause or visible pathology Thing is this doesn't need to be the end of the road simply because a doctor has no pelvic nerve knowledge.
Because some peoples pelvic pain symptoms can be so easily attributed to and then positively diagnosed as nerve pain for instance numbness or burning pain, without any skin irritation, It would be silly not to go that step further to a more appropriate diagnosis. How else is more targeted treatment to be applied without wasting time and money on inappropriate and often useless 'remedies'?
It has been recently reported that pudendal neuralgia is now 'quite easy to diagnose' so it makes perfect sense to take advantage of this. See our PN petition http://www.ipetitions.com/petition/requ ... ----[b]306[/b] signatures now (see what I did there ) COME ON sign it NOW !!!
Take care,
Helen