Vulvar Vestibulitis Support Network

the chronicle of broken Vaginas, what we've done to try and fix them, and how we plan to save the World

Links with Information April 28, 2016

Filed under: Uncategorized — jul @ 12:19 am

Hello, ladies!

It’s been far too long since any of us VVSN moderators have made any updates to this blog. I apologize ! Hopefully most of you are on Facebook and have joined the VVSN page. Hundreds of women on that page are giving great advice & comfort. What a wonderful group we all are, working together!

I ran across a few links that have some recent developments and/or possible helpful bits of information. At least, slowly but surely, more is being done about this horrible condition. It’s still too early to know what specific causes exist, since all vulvas are different!  I hope  you find some helpful information from these links.

Julie

University of North Carolina School of Medicine:

 https://www.med.unc.edu/obgyn/Patient_Care/specialty-services/MIGS/vulvar-vestibulitis

Capsaicin for treating VVS?

http://www.medscape.com/viewarticle/493971

Vulvar Vestibulits Relief – a website for support

http://www.vulvarvestibulitisrelief.com/

 

 

 

 

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Help NVA Collect Vital Information on Treatment Effectiveness September 15, 2012

NVA is committed to continuing its support of the first National Vulvodynia Treatment Outcomes Registry, because due to a lack of research, women with vulvodynia, as well as their clinicians, have little to no scientific evidence on which to base important treatment choices. Currently as many as 30 different therapies are used to treat vulvodynia, but we don’t know which treatments work for whom. Without the billions of dollars necessary to conduct controlled trials of all of these therapies, the Registry project simply tracks women as they are diagnosed and undergo treatment to collect this vital data. Rather than experimenting with treatments for months to years to determine what’s effective, women and their physicians will be able to use the data generated by the Registry project to know how effective certain treatments are for different vulvodynia subgroups before initiating treatment.

Women age 21 and older may be eligible 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.

To speak to the Registry’s Research Coordinator, Katy Capote, about participating at any of the sites, please call 407-303-2721 or send an email to katerina.capote@flhosp.org.

Medical professionals interested in obtaining Registry flyers to distribute to their patients should also contact Ms. Capote.

To read more about the project, including information on the Registry Investigators, please visit NVA’s web site.

Registry sites are located in:
Little Rock, Arkansas
Los Angeles, California
Denver, Colorado
Fort Lauderdale, Florida (coming soon)
Orlando, Florida
Annapolis, Maryland
New York City, New York (coming soon)
Akron, Ohio

 

UCLA Brain Imaging Study June 12, 2012

Filed under: Uncategorized — jul @ 7:06 am
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UCLA Brain Imaging Study

 

Women between the ages of 18 and 55 who have been diagnosed with Provoked Vestibulodynia (formerly vulvar vestibulitis syndrome), or are experiencing chronic pain at the vaginal opening with/without intercourse may be eligible to participate in this study. Women must be right-handed and cannot be pregnant. Participation involves two visits over approximately 2-4 weeks.  Dr. Emeran Mayer at the UCLA Center for Neurobiology of Stress (www.uclacns.org) will conduct brain imaging tests (fMRI) to understand how chronic vulvar pain may affect the brain’s activity and structure.  Participants can earn up to $75 and will receive a picture of their brain.

 

For more information, please contact Dr. Andrea Rapkin (310-825-6963).

 

 

WebMD: Chronic Pain April 24, 2012

Filed under: Uncategorized — jul @ 8:46 pm
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Well, it’s pretty much basic info, but it might be helpful to someone anyway! Good reminders, too.

http://www.webmd.com/pain-management/ss/chronic-pain-causes-solutions?ecd=wnl_wmh_042312

 

NVA Volunteer Opp July 25, 2011

Filed under: Uncategorized — jul @ 7:31 pm

NVA Volunteer Opportunity

The NVA is in need of a person with computer programming experience (i.e., proficient in HTML, Dreamweaver, etc.) to help maintain its web site and e-mail correspondence. If you have experience in this area and would be interested in helping the NVA 5-10 hours per month, please send an email, along with your résumé, to chris@nva.org.

 

From NVA – Online Survey June 22, 2011

Filed under: Uncategorized — jul @ 6:36 pm

The Sexual Health Research laboratory is looking for women who fit into only one of the following groups to complete an online survey:
Women who do not have a chronic pain condition (Pain-free group)
Women who currently experience vulvar and/or abdominal and/or pelvic pain (Vulvar/abdominal/pelvic pain group)
Women who have previously experienced shingles and still feel pain even though the rash has healed (Post-shingles group)
The survey will take approximately 30-45 minutes to complete, and all information is completely anonymous. To thank women for participating, there will be four draws (for $50 prizes) each month. Participants must be fluent in English and 18 years or older.

If interested, please contact the Sexual Health Research Laboratory by phone (613-533-3276) or email (SHRL@queensu.ca). Alternately, feel free to visit the following website to access the survey directly: https://surveys.psyc.queensu.ca/Checkbox/neuropain.aspx

All calls and email contact are treated with the strictest confidentiality. A paper version of the questionnaire is available upon request.

 

Vulvodynia Treatment Registry Enrolling in Six States (from NVA) June 15, 2011

Filed under: Uncategorized — jul @ 9:13 am

Vulvodynia Treatment Registry Enrolling in Six States
Arkansas, Colorado, Ohio, Florida, Maryland, Washington DC

NVA funded the creation of the first Vulvodynia Treatment Registry because it is unacceptable for women not to have scientific information on which to base their treatment choices. We’ve expanded the Registry project to seven enrollment sites in six states: Arkansas, Colorado, Florida, Ohio, Maryland and Washington DC.

In addition to generating vital data on which treatments are most effective for different vulvodynia subtypes, your participation will help Registry investigators identify factors that can predict treatment success and guide the development of large controlled trials of promising therapies.

If you are between the ages of 20 and 45 and suffer from vulvodynia, you may be eligible to participate in this study. (We’ve also obtained a grant that will enable Registry providers to begin enrolling women over age 45 in mid-late summer!) The study does not provide free medical care and treatment. Participation is voluntary, does not include any experimentation and will not change your treatment recommendation.

To read more about the Registry project, please visit NVA’s web site.

To speak to a Registry coordinator about participating in the following states, contact:

Little Rock, Arkansas
Christina Hutchinson (501-686-6799, cmhutchison@uams.edu)

Los Angeles, California
Coming Soon

Denver, Colorado
Jill Zika (303-602-9069)

Orlando, Florida (2 sites)
Lilia Portilla (407-303-2721, lilia.portilla@flhosp.org)

Baltimore, Maryland
Gwen Monroe (443-632-0200)

Akron, Ohio
Sara-Jane Salstrom (330-375-4293, salstros@summahealth.org)

Washington DC
Hillary Tolson (202-887-0568)