Study for Women with Chronic Pelvic Pain

[NatVulvAssoc]

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).

[AroraNightfire]

That sounds like something I might be interested in. If its local. I am unable to travel long distances. My pain is just too strong, too overwhleming.

[helenlegs 11]

Let us know if you do contact them. I think it has got to be a good thing, more research is always necessary. It would also be interesting to see how many women actually went on to be diagnosed with PN.
Take care,
Helen

[DoubleEdgedSword]

Seems it's only for folks in the US? I'm in Canada so I don't know if I'd qualify, but it looks interesting..

[gibson33]

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 http://www.nva.org/treatmentregistry.htmlviagra online 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.

My father get excited when he read this article! now he want to know more about it.. he took it seriously!
Thank you...

[shesingsjazz]

I have registered in Orlando with my doctor there as she's part of the Registry. She actually has lots of patients who get treated for pudendal neuralgia, including myself. Anyone wanting more info, pm me and I can give details. The doctor is a pelvic pain specialist, Dr. Georgine Lamvu and she's very knowledgable and skilled.

[Rosemary]

she singsjazz

I have just found your doctor on utube - has she said to you at all that surgery may help your PN/vulva pain ? - this is all a branch of the pudendal going into the vulva.
She seems an experienced caring lady - I am in the UK but would be interested if you are able to share anything.
Wishing you less burning pain.
Rosemary X

[shesingsjazz]

Dr. Lamvu didn't talk about surgery at all. I had surgery with another doctor about 7 months ago (not pudendal, but peripheral tissue) and what a mistake that was! I'm in more pain now than before the surgery. I've been seeing a pain specialist for the past few months though and he is suggesting neuromodulation. My insurance has just approved it and I'm having the 5-day trial done in a week. He said that the rep from Boston Scientifics is suggesting they test it first on the conus medullaris as there's been research showing this is a good spot for pudendal neuralgia/neuropathy. If that doesn't get coverage then they'll try the sacral area. He's so committed to helping me get pain relief that I brought up doing peripheral nerve stimulation if both of those fail and he said he'd be willing to try that as well, or find a doctor for me who could do it! I'm crossing my fingers that the SCS will work for me as everything points to this being a neuropathic condition.

[Violet M]

There was a study that came out about neuromodulation at the conus medullaris being effective for pudendal neuralgia. http://www.ncbi.nlm.nih.gov/pubmed/24249588

Good luck, I hope it works for you.

Violet