Consider Donating to NVA November 27, 2018

Hi ladies!

I’m forwarding this update from NVO:

Please remember the National Vulvodynia Association (NVA) with a donation this holiday season. Our small staff and volunteers work days, nights (and even holidays!) to assist women with vulvodynia. Your donation will help us fund important research on the causes and treatment of vulvodynia.

Today is Giving Tuesday, a global day dedicated to giving back and supporting organizations that have made a difference in your life. This is the perfect day to give to the NVA and make a difference in the lives of women with vulvodynia. You can donate online now at https://www.nva.org/make-a-difference/donate/
or mail a check (made payable to the National Vulvodynia Association) to Tamara Matos, NVA Administrator, PO Box 4491, Silver Spring, MD 20914-4491.

Sincerely,

Phyllis Mate
NVA President
pmate@nva.org

P.S. If you are no longer an NVA member (or have never been a member), please consider joining or renewing at www.nva.org/join. Patients and health care providers can join and membership dues help fund our research and education initiatives. Health care providers can also join our referral list by contacting Tamara Matos by phone at 301-299-0775 or email at admin@nva.org.

NVA Study November 13, 2018

Participants Needed for a Study Designed to Evaluate the Efficacy and Safety of Dysport in Vulvodynia Patients.

If you are a woman 18 to 45 years of age who has had vulvodynia for at least 6 months, but for no more than 15 years, and never had a vaginal delivery including attempted vaginal delivery, you may be eligible to participate in this study. Participants must have provoked pain at the vestibule on a Q-tip test. Patients with deep pain during intercourse are not eligible to participate in this study. Participants also cannot have genitourinary conditions which may interfere with the study, previous surgery that according to investigator’s judgement may impact the study outcome (including but not limited to hysterectomy, vestibulectomy, urologic surgery, perianal surgery) or genital trauma or mutilation/cutting.

This study will be conducted in the following locations:
• San Diego, California
• Washington, DC
• Kansas City, Missouri
• Omaha, Nebraska
• New Brunswick, New Jersey
• Bryn Mawr, Pennsylvania
• Nashville, Tennessee
• Seattle, Washington
If you are interested in participating, please email clinical.trials@ipsen.com. For more information on the study, please go to https://clinicaltrials.gov/ct2/show/NCT03598777

Links with Information April 28, 2016

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/

 

 

 

 

Important Survey from NVA! June 11, 2013

Dear NVA Friend,   Over the last decade, there has been a growing recognition of the important role that patients play in guiding the research and development of new treatments for various disorders, including vulvodynia.    Currently, the NVA has several opportunities to communicate the experiences, needs and preferences of women and girls with vulvodynia to federal health agency directors and biomedical industry leaders, and we’d appreciate your help. If you are a woman or girl who has been diagnosed with vulvodynia and has tried at least one therapy, please take 5-10 minutes to complete a brief survey about your treatment experiences and what you consider to be most important in developing new and effective treatments for the disorder.   The collected information will be used solely for awareness and educational purposes, and your contact information will not be shared.    To complete the brief survey, please visit: https://www.surveymonkey.com/s/3YZ3VTP.   Thank you in advance!        Christin Veasley NVA Executive Director

Contact Us  National Vulvodynia Association PO Box 4491, Silver Spring, MD 20914-4491 301-949-5114 (phone) | 301-299-3999 (fax) | www.nva.org  Support the NVA Your support of the NVA’s mission is vital. Founded in 1994, the NVA is the only non-profit organization that serves women and girls affected by vulvodynia, medical professionals who care for sufferers, and scientists who conduct research on the disorder. The organizationdirectly funds critical vulvodynia research, advocates for increased federal funding of vulvodynia research and awareness programs, supports the establishment of vulvar pain clinics, fosters the professional growth of those dedicated to the care and/or research of vulvodynia, develops educational programs for patients and medical professionals, provides supportive services to affected women and works to increase public awareness of vulvodynia. To make a 100% tax-deductible donation, please visit https://www.nva.org/join_ donate_renew.html . For more information, please visit www.nva.org.

Clinical Trial Seeking Women in AZ, CA, DC, PA & NY September 22, 2012

A Randomized, Double-Blind, Placebo-Controlled Research Study to Evaluate a
Novel Vulvar Cream Containing Cutaneous Lysate for Provoked Vestibulodynia

Women between the ages of 20 and 55 who are not pregnant or breastfeeding may be eligible to participate in this study. Women must experience pain with tampon insertion and/or intercourse that affects their sexual function, and practice a reliable form of birth control. Those with a history of diabetes, heart disease, HIV, hepatitis B or C, or menopause are not eligible. Women must be able to attend two clinic visits, plus two telephone interviews, and complete all questionnaires in English over the course of the 12-week study. The study cream and other related study tests will be provided at no cost.

Participating Centers:

The Centers for Vulvovaginal Disorders (Washington, DC)
Contact Hillary Tolson
202-887-0568
Principal Investigator: Andrew T. Goldstein, MD

Pelvic & Sexual Health Institute (Philadelphia, PA)
Contact Elizabeth Elias, CCRC
215-863-8100
Principal Investigator: Kristene Whitmore, MD
Co-Investigator: Susan Kellogg-Spadt, PhD, PA-C

San Diego Sexual Medicine (San Diego, CA)
Contact Margaret Carr
619-265-7691, information@sdsm.info
Principal Investigator: Irwin Goldstein, MD

Arizona Vulva Clinic (Phoenix, AZ)
Contact Gabrielle Rodriguez
602-265-1112
Principal Investigator: Joseph Brooks, MD

New York Center for Women’s Health Research (New York, NY)
Contact Lauren Pellegrino, WHNP-BE
649-290-9560
Principal Investigator: Kenneth A. Levey, MD

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

Study – Seeking Participants in TN

The University of Tennessee Health Science Center (Memphis) is looking for women to take part in a Multicenter Controlled Trial of Gabapentin for Vulvodynia. Women with vulvodynia between the ages of 18 and 50 may be eligible to participate in this clinical research study that seeks to determine the effectiveness of Gabapentin-ER in relieving symptoms associated with Provoked Vestibulodynia (PVD, also known as “vulvar vestibulitis” or “vulvodynia”). Gabapentin is approved for the treatment of neuropathic pain and may be effective in treating pain in other conditions, such as PVD. All participants will receive the study medication and placebo treatment (or inert substance) will be used. Participation is voluntary. The research study involves 7 visits over an 18-week period and participants will be asked to keep an electronic daily diary to record pain levels.

Contact: To learn more about this study, or to participate, please contact Dr. Michelle Washington by phone (901-448-1500) or email (mwashi10@uthsc.edu).
Principal Investigator: Candace Brown, PharmD
Website: http://www.hopeformypain.org/

UCLA Brain Imaging Study June 12, 2012

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).

 

Reminder: Facebook April 24, 2012

Reminder:
We have an active group of phenomenal ladies (of all ages, from all over the world) on Facebook!

Vulvar Vestibulitis Support Network (VVSN)

Note: It is for women only. Requests to join will be approved by an administrator. Apparently, the Facebook “rules” are that it can be an open group, closed group, or secret group. The thing is, we want it to be exclusive to the women who want to be in the group & no one else, but we want it to be available to any woman who does a Facebook search to find the group. However – the list of members belonging to the group is not private. Kinda sucks, I know – but that’s the way Facebook has it. I’ve complained!

Julie

WebMD: Chronic Pain

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