Study for Women with Vaginal Discomfort or Pain with Intercourse

[NatVulvAssoc]

Treatment Study for Women with Vaginal Discomfort or Pain with Intercourse

If you are a woman (age 21 or older) who suffers from vulvo-vaginal discomfort/pain or pain with intercourse, you may be eligible to participate in a study that tracks women as they receive medical treatment to determine how effective that treatment is, as well as the factors that can predict treatment success.

One in four women of all ages and ethnicities suffer from vulvodynia over the course of their lives. Because the condition is rarely discussed and many doctors don’t know about it, many women feel alone and isolated, unaware that help is available for them! Women with vulvodynia experience discomfort/pain (burning, stinging, raw, sharp, knife-like) in the vulva (the genital area surrounding the opening of the vagina), as well as discomfort/pain with intercourse, tampon insertion or simply sitting. They oftentimes suffer from other pain conditions such as fibromyalgia, chronic fatigue syndrome, painful bladder syndrome, irritable bowel syndrome and temporomandibular disorders (TMD).

The National Vulvodynia Treatment Outcomes Registry is the first national multi-site study investigating the effectiveness of therapies used to treat vulvodynia. Over the next seven months, 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, does not change women’s treatment recommendations, and does not provide free medical care.

Registry sites are currently located in: Arkansas (Little Rock), California (Los Angeles), Colorado (Denver), Florida (Orlando), Maryland (Annapolis), Ohio (Akron) and Washington DC.

To participate or for more information, please contact Registry Coordinator Ms. Katy Capote by phone (407-303-2721) or e-mail (katerina.capote@flhosp.org).

[K Howard]

Although I have Vaginismus and not Vulvodynia after clicking on the ‘National Vulvodynia Treatment Outcomes Registry’ link, I found it pretty cool to see a picture of my OBGYN (Dr. Georgine Lamvu) who will serve as the Director of the Registry project!

[Allie]

K Howard,

Small world! Where are you from?? I have seen Dr. Lamvu a couple times. She isn’t my OBGYN because I found a doctor thats closer to me, but she is the one who put me in touch with my awesome pelvic floor PT! 🙂 Are you from Orlando?

[K Howard]

Yes, it is a small world! Yes, I’m in Orlando. Dr. Lamvu also referred me to a pelvic floor therapist but it is right down the street form her office. Where are you from?

[Allie]

I am from Auburndale. About an hour from Orlando depending on traffic. My OBGYN is in Celebration, which is only about a 25 min drive. Did you ever try PT? Her name didn’t happen to be Traci was it? I seen her a couple years ago. I think she works now at a office down the street from Dr. Lamvu. My PT’s name is Joy, her office was located in Maitland.

[K Howard]

Wow Allie! This is just too much lol. Yes, I am currently doing PT (I have had two sessions post procedure and have a third appointment scheduled for tomorrow afternoon) and yes, it is with Tracey! Her office is right down the street from Dr. Lamvu. I like her a lot. She seems to be very caring and willing to learn more about vaginismus. At my last appointment I gave her some of the information brochures from Dr. Pacik’s office and also made some copies of other information that he provided. I am planning to follow up with her at tomorrow’s appointment. I’m not sure exactly where Auburndale is located but an hour away isn’t really that far. If you’re open to it, my husband and I (or just myself if you would feel more comfortable) would be more than happy to speak with you regarding the procedure and any other questions you may have. Perhaps we could meet halfway or something? If you would like you can email me and we can work out the details. Definitely won’t feel bad if you don’t want to but just wanted to let you know that we’re here if you would like to. 🙂

[Allie]

I just emailed you! 🙂