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

WebMD: Chronic Pain April 24, 2012

Filed under: Uncategorized — jul @ 8:46 pm
Tags: , , ,

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

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Provide Hope to Others by Sharing Your Story April 23, 2012

The NVA is looking for women who’d like to share their stories in future issues of our printed newsletter, NVA News. There are many different types of vulvodynia and no one treatment(s) works equally well for all women. As such, rather than detailing the specifics of the treatment(s) received, we wish to focus more generally on how receiving vulvodynia treatment has impacted women’s health and quality of life. Our goal in sharing these testimonials is to provide hope and encouragement to women during their treatment process.

Please limit your response (max of 750 words) to one or more of the following topics.

How has your journey in receiving treatment for vulvodynia improved your physical and emotional health, your overall quality of life and/or relationships with your partner, family members and friends?

What have you learned (in general and about yourself) through this process?

If your vulvar pain is not completely resolved with treatment, what coping mechanisms do you utilize to remain hopeful?

Are there any unexpected positives that you’ve gleaned through your journey?

Based on your experiences, what helpful/hopeful advice would you give to a woman who is newly diagnosed with vulvodynia and starting a treatment regimen?

Please send your submission to Cristina Shea by e-mail (cshea@nva.org).

In your email, please state how you would like to be identified in the newsletter (e.g., anonymous, full name, first name and last initial only).

If you are willing to have your picture printed along with your story, please attach a high-quality photo of yourself to the e-mail.

 

Help NVA Collect Much-Needed Information on Treatment Effectiveness

Help NVA Collect Much-Needed Information on Treatment Effectiveness

First Multi-Site Treatment Registry to Enroll Additional 350 Women in 2012

NVA is committed to continuing its support of the first National Vulvodynia Treatment Outcomes Registry, because due to a lack of research, clinicians and patients have little to no scientific evidence on which to base important medical decisions. The only way that women will ever be informed of the treatment(s) proven effective for their specific vulvodynia subtype – thereby decreasing the time between diagnosis and initiation of effective treatment – is through this type of research! Please help us collect this vital data to help women who are currently suffering as well as those who will come after us.

Over the next 10 months, an additional 350 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 and does not change women’s treatment recommendations.

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

Pittsburgh, Pennsylvania (coming soon)

Washington DC

 

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)

 

From NVA: Treatment Registry Now Enrolling Women in Six States March 26, 2011

Filed under: Uncategorized — jul @ 6:23 pm

Treatment Registry Now Enrolling Women in Six States
Arkansas, Colorado, Florida, Ohio, 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 now 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’re also working to obtain a grant that will enable Registry providers to enroll women over age 45 starting this 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)