One of the greatest obstacles we face with finding a cause and cure for vulvodynia is a lack of awareness. Very few people have ever heard of "vulvodynia", let alone given much thought to anything like pain with sex or sitting with good posture. Isn't sex supposed to be pleasurable? Isn't sitting supposed to be relaxing? Well, not for all of us...
To get the word out, we must be vocal. Even if you don't want to go around telling your neighbors, friends or even loved ones about your "pain down there," it is important to advocate for the cause. Otherwise, no one knows about vulvodynia, no one talks about vulvodynia, no one cares about vulvodynia, and no one funds research to better understand vulvodynia.
How can you advocate?
Do I have to tell people I have vulvodynia?
No! In fact, you can often remain anonymous in your efforts. Or, better yet, find a way to present vulvodynia as an issue that everyone should care about--not just women suffering from it. Those who suffer already support whatever you're saying. If you can find a way to persuade everyone else to care, you've struck gold. Some points I've often made is that this disease is #1 underserved, #2 affects up to 15% of women over the course of their lives, which is huge, and #3 may not pose an immediate health threat, but over time can cost as much as any triple bypass surgery once you calculate a life filled with physical therapy, psychotherapy, antidepressants, compounded creams, and loss of productivity as women use disability claims to escape 40 hours/week in a desk chair.
Current Opportunities
To get the word out, we must be vocal. Even if you don't want to go around telling your neighbors, friends or even loved ones about your "pain down there," it is important to advocate for the cause. Otherwise, no one knows about vulvodynia, no one talks about vulvodynia, no one cares about vulvodynia, and no one funds research to better understand vulvodynia.
How can you advocate?
- Write to, call or meet with your local, state and federal representatives to tell them about how vulvodynia has impacted your life and what they can do to fix it, such as allocating funding to more research on chronic pain conditions including vulvodynia.
- Write a letter to a local media outlet to explain to them why putting together a story on vulvodynia is newsworthy.
- Send a thank you note to anyone who already produced a story on vulvodynia. Note: Oftentimes these stories are severely oversimplified if not incorrect. It is important to highlight these errors, but don't forget to start with a compliment. Click here to see some past stories you may wish to send a note about.
- Send a letter to all the doctors who misdiagnosed you so they are more likely to correctly diagnose future women with vulvodynia.
- Send a letter to all the doctors you saw in the past who treated you with x, y, and z to tell them about the new treatment options out there or what you have found useful. Often, doctors have their preferred treatments, and introducing them to new ideas helps them expand the purview of their practice.
- Ask your current and past doctors to join PFSM so they can keep up on vulvodynia research.
- Take part in surveys and studies done by researchers trying to learn more about vulvodynia. For current studies supported by the NVA, click here. You may also wish to ask your doctor(s) if they know of any studies or are conducting any themselves.
Do I have to tell people I have vulvodynia?
No! In fact, you can often remain anonymous in your efforts. Or, better yet, find a way to present vulvodynia as an issue that everyone should care about--not just women suffering from it. Those who suffer already support whatever you're saying. If you can find a way to persuade everyone else to care, you've struck gold. Some points I've often made is that this disease is #1 underserved, #2 affects up to 15% of women over the course of their lives, which is huge, and #3 may not pose an immediate health threat, but over time can cost as much as any triple bypass surgery once you calculate a life filled with physical therapy, psychotherapy, antidepressants, compounded creams, and loss of productivity as women use disability claims to escape 40 hours/week in a desk chair.
Current Opportunities
- Petition: Help increase the leverage of advocates working to improve women's sexual health by signing this petition. You may remain anonymous, but your participation helps increase our strength in numbers to increase funding and support for vulvodynia. Further, ask your friends and loved ones to sign!
- Treatment Registry: Add yourself to the National Vulvodynia Treatment Outcomes Registry here.
- Research Studies: Current research studies supported by the National Vulvodynia Association are here.
- Membership: Join the National Vulvodynia Association and support their work to improve the lives of women suffering from vulvodynia through education, support, advocacy, and research. In addition to receiving their quarterly newsletter and having access to a number of online resources, your paid membership directly increases the leverage the National Vulvodynia Association has when seeking funding and advocating for change through local, state and national government. Join here.