New Treatment Registry Cities with the NVA…

Please read the email below that I received for the NVA for enrollment in their new treatment registries around the country. I really encourage everyone to participate in this- as many of you know, finding a good and knowledgeable Doctor who treats Vulvodynia is hard to come by. I made a decision to not move to one of these cities on the targeted registry because I could not find a specialist I approved of… Hopefully you all will help pave the way for others…

 

Email begins from chris@nva.org :

We Need Your Help to Study the Effectiveness of Vulvodynia Treatments

Vulvodynia Treatment Registry to Enroll 400 Women in 2012 

 

Due to a prior lack of research, women with vulvodynia have almost no scientific information to help guide them in making important decisions about their medical treatment. Although medical professionals report utilizing as many as 30 different therapies to manage vulvodynia symptoms, currently, women can only determine treatment effectiveness through a trial-and-error process that can take many months.

 

Simply put, this is unacceptable and is the reason why NVA funded the National Vulvodynia Treatment Outcomes Registry. Women who participate in this important project are followed at one of eight Registry sites (see below) for one year after initiating vulvodynia treatment. Participation is voluntary, does not include any experimentation and does not change women’s treatment recommendations. In addition to generating vital data on the effectiveness of treatments for different vulvodynia subtypes, collected information will help to identify factors that can predict treatment success and guide the development of large controlled trials of promising therapies. Additionally, we recently expanded the Registry project to include postmenopausal women, since this group is routinely excluded from research studies, as well as the collection of DNA samples, which will be used for genetic analyses.

 

Over the next 12 months, Investigators from nine states will enroll an additional 400 women in the Registry project. 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. To read more about the project, including information on the Registry Investigators, please visit NVA’s web site. Medical professionals interested in obtaining Registry flyers to distribute to their patients should also contact Ms. Capote.

 

Registry sites are located in:

Arkansas (Little Rock)

California (Los Angeles)

Colorado (Denver)

Florida (Fort Lauderdale – coming soon)

Florida (Orlando)

Maryland (Annapolis)

New York (New York City – coming soon)

Ohio (Akron)

Pennsylvania (Pittsburgh – coming soon)

Washington DC

Email ends.

Walk like an 80 year old…

For most of my life I have reacted to pain in a similar way- I shake it off. Didn’t matter if it was a stubbed toe, to running into a wall or falling down. It never really phased me.

I have taken this thinking into my adult life and often end up with massive bruises that I don’t remember or know the cause of and other clumsy casualties. So, when I started having symptoms of Vulvodynia- it must have been extreme in order for me to feel and acknowledge the pain.

Yesterday, I got my monthly massage (which I started doing 6 months ago). It has been a good way to force myself to destress from work and do something good for myself. Most months I have come out of the session feeling amazing and relaxed. Yesterday, I just felt like an 80-year-old lady.

More than usual my hips and pelvic area were triggered and overwhelmed by overactive nerves and pain. Most of the time I am thinking- rub my back but this time I was thinking- rub my butt. It’s tough to acknowledge this as a 28 year old but the last 2 years of work and doctors galore has taken a major toll on my body. I am exhausted, constantly in pain and often anything I do- my nerves flare up and my body get’s angry.

What I am learning- is that I cannot just walk around shaking off every bruise and bump I have. Some periods of my life will be harder than others and I have to respect and acknowledge that. So here are some helpful things I learned to do:

Yoga stretches: happy baby, cobra and pigeon

Ice packs!

Walks

Crafts and books to take my mind off things

 Play with friends!

New Survey

http://www.nva.org/survey.html

 

Take a second and fill out this new survey for women with Vulvodynia and coexisting conditions!

How common is Vulvodynia…

 

You can easily find the answer on the homepage of the National Vulvodynia Association.

Vulvodynia and Sexuality

When I first started experiencing the symptoms of Vulvodynia I felt defeated, scared, alone, angry and forever independent. Often in my blog I make it look so easy, so funny but it’s more complicated than that.

A year after the symptoms started, I was finally diagnosed and however scary the diagnosis- it was better than not knowing and I could figure out what to do next.

For those first 3 years I was terrified to interact with people, give off any attraction or even consider intimacy possible. I was enraged and violated when people hit on me or overcome with pain and resentment when friends shared their latest conquest.

I have made many choices to deal with the physical and emotional pain that comes with Vulvodynia and I decided a few years ago to write down my feelings about sexuality and chronic pelvic pain (however, I believe there is more to them than Vulvodynia)

My Sexuality is:

• Fleeting
• Disconnected
• Lost
• Guarded
• Untapped
• Confusing
• Overwhelming

My Sexuality is not:

• Constant
• All consuming
• Attractive
• Desirable

I would like my sexuality to be:

• Part of me
• Something I am proud of
• More than a politic
• Desirable
• Comfortable
• All consuming/ something I can get caught up in
• Not painful
• Connected to me and someone else
• Liberating
• Something that does not seem fearful and dirty at times
• Something that doesn’t get in the way

 

As hard as the battle is on certain days, if someone asked me today how Vulvodynia affects my sexuality- I would say, “It made me face it, it made me acknowledge it and honestly, I feel like I have more connection with it than I did before vulvodynia. It threw it in my face and made me deal”.

I am grateful for this outlook and understanding of how life and sex can still exist with Vulvodynia and I was lucky after the first few years to have a relationship where I was supported and understood. It made me realize- it’s not gone just different and sometimes I almost think better. 

To anyone else out there with Vulvodynia reading- some days are better than others, but it’s gonna be o.k.