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.
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
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)
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)
From: National Vulvodynia Association
Subject: New Book Available
Date: Wednesday, March 9, 2011, 9:47 AM
When Sex Hurts: A Woman’s Guide to Banishing Sexual Pain, written by Drs. Andrew Goldstein, Caroline Pukall and Irwin Goldstein, is now available. It includes up-to-date information on vulvodynia and other pelvic/urogenital disorders that can cause painful sex, as well as valuable advice on how you can advocate for yourself, obtain the best possible medical care and improve your quality of life.
You can help the NVA by purchasing the book from Amazon through NVA’s web site. Just click on the book cover located at www.nva.org/book_list.html, proceed with your purchase and Amazon will donate a percentage of your total purchase price to the NVA. Additionally, the authors are generously donating 25 percent of book sale proceeds to the NVA!
From: National Vulvodynia Association
Subject: Please Contact the IOM
Date: Friday, March 11, 2011, 12:32 PM
The Institute of Medicine, charged by the Secretary of Health and Human Services to conduct a consensus study of our country’s current state of pain research, medical management and education, is seeking comments from chronic pain sufferers and medical professionals who treat chronic pain disorders pertaining to:
(1) Barriers to medical care;
(2) Opportunities to improve pain care; and
(3) Groups that may not be adequately treated for pain.
We encourage you to submit a public statement by March 31st at: www.surveygizmo.com/s3/449095/Pain-Research-Public-Comment-Form. When doing so, please be sure to name the specific pain disorder(s), e.g., vulvodynia, that you suffer from and briefly summarize its impact on your health and quality of life.
If you live in Alabama, California, Connecticut, Maryland, Massachusetts, Michigan, Missouri, Nebraska, New York, North Carolina, Oregon, Pennsylvania or Washington, and you are willing to share your story and/or public comment with your local newspaper, please send an email to crystal@nva.org.
University of Minnesota (Online Study)
Subject:
An Online Study of Vulvar Pain Across Pregnancy
Contact:
Rachael Turner
Study Coordinator
vpreg@umn.edu
612-625-1843
Principal Investigator: Ruby H.N. Nguyen, PhD
Requirements:
The University of Minnesota is conducting an online study on vulvar pain and pregnancy. They are recruiting women aged 18-40 with and without a history of chronic vulvar pain who are in the first or second trimester of pregnancy. The study will involve completion of an online survey during each trimester and one survey after the pregnancy has ended. If a woman begins the study during her second trimester, she will be asked to complete both a first and second trimester survey at that time. Participants will be compensated with a $10 Target gift card after completing each survey.
From: National Vulvodynia Association
Subject: Nerve Block Research Study – California
Date: Wednesday, March 2, 2011, 10:13 AM
Five more participants are needed for a UCLA research study investigating the effectiveness of vaginal and lower back nerve blocks (injection of an anesthetic medicine) for vulvodynia. Women with Generalized Vulvodynia who are between the ages of 18 and 65 may be eligible to participate. They cannot be pregnant or plan to become pregnant in the next three months. The study will last up to seven months and include three to five treatment sessions, a two-month follow-up visit, and a phone call two months later to assess progress.
For additional information, please call 310-825-6963.
The study’s Principal Investigators are Drs. Andrea Rapkin and John McDonald.
Hey! We’re on Facebook:
Vulvar Vestibulitis Support Network (VVSN)
Come find us and join! We’d love to see ya — we’re a little bit more active on there!
(We’re trying!!)
Julie
I’ve been using these products for over a year now.
My vulva and my boyfriend (and I) like them!
Do you have questions? Do you need help? Or support? Drop us a line!
vvssupport@gmail.com
