- Get educated. Read books and articles that deal with the disorder. (Ask your doctor, or see Resources for suggestions and links.) Review a good, simple diagram of the female genitals so you can communicate clearly with your doctor about the exact location of your symptoms. You may have been raised to avoid exploring intimate parts of your body. But it’s those intimate parts that hurt. The better you understand them, the better your chances of getting relief.
- Get organized. To make the most of your appointments, bring a list of questions, and take notes. It is important to keep notes about your pain, treatments you try and their outcomes and visits with your doctors in order to provide each practitioner you see with a complete overview of your history. This can be helpful in identifying new treatments to help your pain.
If your insurance carrier refuses to cover some treatments or medications, call the service department and complain, write them a letter, enlist the help of your doctor— and always keep notes regarding with whom you have spoken, on what date, and what they said. You will need to be an active advocate and manager of your care.
- Live healthily. Even if you’ve always been vigilant about diet and exercise, vulvodynia can make it hard to maintain a healthy lifestyle. For some patients, many forms of exercise may become quite painful. The medications that help your pain may have side effects like water retention, increased or decreased appetite, or high blood pressure, among others. This makes it especially important that you maintain healthy habits in the areas that you can control, such as watching your diet, getting enough sleep, and keeping up any kind of physical activity you can bear.
- Make changes. There are practical steps you can take that may lessen your pain. Medical supply companies sell donut-shaped cushions that can relieve pressure when you sit. Avoid tight or synthetic pants or stockings, and stick with pure cotton sanitary products. Use soaps and detergents that are free of fragrances and dyes. The Resources page lists sources for products that are V-friendly.
- Reach out. In addition to the practical challenges, living with vulvodynia can be emotionally and psychologically distressing. For this reason, it’s important to build relationships that can provide both practical and emotional support. Family and friends are of course the first line of support. If you have a partner, it is important to educate him or her about vulvodynia and, together, explore options for physical intimacy.
It can also be helpful to reach out to other vulvodynia sufferers, who can offer not only an understanding ear but also practical tips, advice and encouragement. Facilitating these connections is one of the goals of Vulvodynia Matters. Connecting with our support group of women to share stories and successes will start you on the path to recovery.
- Don’t give up! A positive attitude may not relieve your pain, but it can make it easier to deal with. By working together, doctors, researchers, patients and their families can find answers to the problem of vulvodynia.