National Vulvodynia Association

I didn’t smile anymore and cried every day. I didn’t know about vulvodynia and never imagined that pain could lead to such an intense state of despair. Having said that, I want you to know I found my way back to a ‘normal’ life. This journey has given me strength I never knew I had. First I want to say we are not victims. You can actually do things to help your body heal. I hope that your road to well-being will be faster than mine.

Are you overwhelmed by negative thoughts because of the pain? You can choose not to have those negative thoughts. I have learned NOT to think constantly about the pain. You can learn to replace negative thoughts with positive ones. Please take from what I’ve learned below and adapt it to your needs. Your goal is to figure out what makes you feel better. I’m hopeful that some of the following advice will be helpful to you.

1. Positive thinking helped me get better because it pushed away fears that are triggered by pain. Catastrophic thinking can actually make pain worse so there’s a real benefit in overcoming it. From my experience, negative thinking utilizes a lot of energy that can be used to make you feel better. How do you learn to stop negative thoughts from recurring? You start by becoming aware of them and observing the consequences, e.g., notice how your anxiety increases. Next is the most challenging part. You have to create positive thoughts to replace them, e.g., “I choose to feel better today” or “I’m getting help and feel calmer today.” Even if you feel pain at the moment, saying this to yourself multiple times can help lessen the pain and anxiety. Most of us don’t understand the powerful effect that our thoughts have on our bodies. Focus your thoughts on the present, rather than the future. To learn more, look up mindfulness and cognitive behavior therapy. These techniques helped me a lot.
2. Commitment to Self-care. I put a mat and blanket near a wall with motivational phrases that have deep meaning for me. In this space I do pelvic floor muscle relaxation exercises, many of which are familiar to you. My PT taught me deep breathing to relax the pelvic floor. You inhale to a count of four and exhale to a count of eight. If you’re doing it correctly, your abdomen will rise as you inhale. Deep breathing relaxes pelvic floor muscles and I do it daily for maximum benefit. Also remember to relax your shoulders by bringing them down. After completing the exercises, I do 20 minutes of total relaxation using a yoga technique known as Shavasana, a meditative state that is done while lying down. The goal is to clear your mind of all thoughts and release the tension in your body. Shavasana helps me relax body parts that I can’t relax voluntarily.

Taking care of myself also meant starting to do things that I had stopped doing because I feared they would make my pain worse. I stopped playing guitar and singing, and going out to dinner with friends. My PT made me understand that I needed to do some activities I enjoy. I found a special cushion that helps women with vulvodynia to sit comfortably so I can enjoy going out again.

3. Manage your emotions. When my symptoms began, I felt angry and frustrated most of the time. Since negative emotions manifest in your body, being angry was making me feel worse physically. After I let go of those emotions and accepted that I had vulvodynia, I was able to focus on relieving the sources of tension in my body. As I became calmer, I observed that my pain decreased. It’s important to realize that making changes in your thinking and emotions takes patience and practice. You have to commit to making changes and give yourself time to unlearn old habits.
4. Your support network is critical. I am so grateful to my gynecologist and physical therapist for diagnosing my condition and teaching me the steps to take to feel better. My family has emotionally supported me on the most difficult days and continue to encourage me to move forward.

My suffering is over, so now I can smile and enjoy life again. If you’re near the beginning of this journey, I hope your suffering ends soon. Try some of the techniques I’ve described and you’ll discover which ones work for you. Be sure to find health care providers you trust. It’s especially helpful if you and your providers work as a team, because your input is essential to your recovery.