Founded in 1994, the National Vulvodynia Association is celebrating it's 20th anniversary this year. Woo hoo!
I came across the website about ten years ago, when I was first diagnosed. It wasn't much. A few pages. While part of me was relieved I wasn't alone, the fact that the website was bare bones reinforced my (erroneous) belief that this vulvodynia thing must be rare, and therefore I must be a freak, destined to a medical journey of horrors experienced in solitude... (This is a great example of catastrophic thinking in action. I don't recommend it.)
I am happy to report that the NVA has grown by leaps and bounds over the past decade. There's plenty of information on vulvodynia itself, conveniently tailored for both patients and medical professionals. So cool that they are working to educate the medical community! There's also info on the practical side of vulvodynia, like dealing with chronic pain in the workplace.
If you want even more info, you can join the NVA for access to an online vulvodynia learning center, a list of doctors treating vulvodynia, resources for women wanting to become pregnant, and more. The NVA is a non-profit organization run mostly by volunteers, so your membership donation helps them keep things running. No cash to spare? You can write to them explaining your situation and they will do their best to accommodate your needs.
There is a full list of their activities here. One of the coolest, in my humble opinion, is the Support Network of about 100 women spread across the country to provide a personal contact and source of information for women suffering from vulvar pain. In some cases, they even organize support groups. (And as you know, I think support groups are the bomb.)
In short, if you are feeling like you are in a vulvar pain rut, the NVA can help get you out of it and on your way to feeling better. Yes! We love feeling better!
So here's a big ol'
to all of the NVA volunteers for their 20 years of hard work! You are being the change we all wish to see in the world, and that is a beautiful thing.