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

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/

 

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

 

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.

 

Rain March 2, 2009

Filed under: depression,Diet/Nutrition,health,Life,Support Group,womens health — Katie E @ 5:10 am

We had a great meeting today at Pied Cow. But it’s been rainy and unpleasant, and everyone’s getting anxious for spring. I thought this advice from my friend might be good timing. Especially if you’re not feeling happy about your vagina.

From my friend Rochelle ~

Looking out my window and seeing the grey ceiling is discouraging.  Being a California girl I miss the blue skies of winter and the high clouds on a cloudy day.  The Pacific NorthWest offers a perma-ceiling, with very little cloud break, which could lead to feelings of hopelessness, lethargy, lack of motivation, or just feelings of being sad.

We have the power to combat these feelings, and we must for our winters are long in the Portland area.  The first is to set goals surrounding your activity.  Don’t just work out to be thin, there must be a specific reason, a tangible, achievable goal.  I like to set mini-goals because the feeling of success never is tiring.

Second, find some down time, a prayer and meditation room, a coffee ritual, a time to sit and read or stare out at the perma-ceiling and count all of the things you are thankful for because it does rain so much here.

Third, women need to spend time with friends talking and sharing.  We are wired to have deep sensitive conversations, and not deep funny conversations.  Call up a friend, suggest putting on layers of clothing and go for a refreshing hike, or walk in the rain or snow, or the blistering East wind.

Aside from these  fun ideas it is important to take some natural remedies to combat depression, striking it down before it strikes you down.
1)    no refined food products
2)    limit alcohol intake
3)    take cold showers (or finish your shower with a cold rinse)
4)    take vitamin D3 supplements
5)    take emergen-C (low sugar version)
6)    get enough omegas (fish oil)

As the long winter stretches on there will be more writings on depression.

 

Invitation to Participate in VVS Research February 1, 2009

Filed under: Research,Support Group — Katie E @ 4:58 pm
Tags: , ,

We received this invitation from an undergraduate researcher.

“This is an invitation to participate in undergraduate research conducted by Ms Kate Flynn, under the supervision of Dr. Rebecca Knibb at the University of Derby.

Participation involves an interview of up to thirty minutes. This can be conducted via live chat facilities. The interview covers such areas as your experience of vulvodynia, your reasons for seeking out online resources relating to vulvodynia, and the benefits and disadvantages you have experienced while using them.

Participation in the study is completely voluntary and is open to all women aged 18 or over. Your answers will be quoted as part of an undergraduate research project, however the researcher will not use your real name, thereby assuring the information you provide will remain anonymous. You can withdraw from the study at any time.

If you would like to ask any questions regarding the study or express an interest in participating, please contact the researcher using the details below.

Thank you for your time.

  • If you’d like to participate in the online survey click HERE.
  • If you’d like to participate in the full study please email us at vvssupport@gmail.com and we’ll send you the contact information.

Enjoy!