For six years, I dealt with severe vulvar pain that felt like an iron was burning me. In social situations, I silently prayed that people wouldn’t tell me to sit down, because it intensified the pain. To understand what was causing it, I visited my gynecologist many times and had numerous vaginal cultures, which were always negative. Eventually I was diagnosed with vulvodynia by a gynecologist who nervously laughed and led with, “You aren’t going to like what I have to say.” She was right. From her behavior, I knew that she was not the right doctor for me. For the next five years, I visited gynecologists, nurse practitioners, midwives, naturopathic doctors, physical therapists, and acupuncturists for second opinions, hoping to find someone who could help me. I was depressed, anxious, and in pain. During this period, I encountered many people who helped me and many who made me feel worse emotionally. Now that I am no longer in pain, I want to share my story with the hope of helping others. I also want to give feedback to women’s healthcare providers. Often, it seemed like there was no “care” in healthcare. Today, I am grateful for the team of health care providers who cared about me and led me to a life with less pain.
● To the doctor I finally found:
Thank you for talking to me with my clothes on! I was only wearing a paper gown when I first met with the five other medical doctors I saw before I found you. My brain couldn’t fully process what they were saying, because I felt awkward and cold.
Thank you for referring me to Pelvic Floor Physical Therapy. Every other doctor wanted me to take medication. Pelvic floor therapy decreased my pain and improved my quality of life immensely!
Thank you for sharing resources with me and being willing to accept my recommendations and resources. Your recommendation of Amy Stein’s Heal Pelvic Pain gave me a specific plan to follow, which really helped; I felt comforted having a plan. Every time I shared a name with you, whether it was an acupuncturist, physical therapist, or product that helped me, you genuinely thanked me and said you would share it with other patients. Your kindness, respect, and willingness to collaborate make you an invaluable member of my team.
● To my acupuncturist and naturopathic doctor:
Thank you for trying so many different approaches. I am grateful you always listen and remind me I will be okay. Most doctors I met only had one treatment approach and didn’t focus on the cause of my pain. You had many ideas and didn’t give up.
● To my support group:
I am thankful the National Vulvodynia Association led me to you. I am so grateful for your support, product recommendations, and willingness to share your different treatment plans. I was both shocked and elated that I was not the only one who felt like this! Before I met you, having vulvodynia was the loneliest condition. Not talking about my symptoms and emotions only made the pain worse. Thank you for talking about your experiences.
● To my pelvic floor physical therapist:
Thank you for listening and for never dismissing my pain. I attribute a large part of my decreased pain to your therapy. You taught me that healing is not linear and gave me so many tools to help myself. My toolbox now includes a Therawand, foam rollers, therapy balls, yoga, stretches, and guided relaxation meditations. Knowing I have these tools makes me less afraid of the pain and empowers me.
Thank you for referring me to resources about my diagnosis. The first few times I heard doctors say “Generalized Vulvodynia” and “Vestibulodynia”, my paper gown got soaked with sweat and I was overwhelmed. Fully clothed in the comfort of my own home, I read Pelvic Pain Explained and the pelvicpainrehab.com blog. Now I understand what causes my symptoms, and I’m no longer terrified of what’s happening with my body. I learned that hormones, recurrent vaginal infections, tight/weak pelvic floor muscles, an irritated pudendal nerve, and stress play a part in my pain. Knowledge is power! I am grateful you helped me find a knowledgeable doctor and mental health therapist. Your referral for cognitive behavioral therapy and to a doctor who actually listens was so important.
● To my mental health therapist:
Thank you for encouraging me to explore the mind/body connection. I’ve learned that being anxious increases my pain and that I can control it by changing what I say to myself. The less anxious I am, the less pain I have.
Thank you for teaching me to be kind to myself. Instead of being my toughest critic, I’ve learned to talk to myself the way I’d talk to a friend. Now when I have pain, I allow myself to rest without feeling guilty about it.
Thank you for teaching me to accept the pain and advocate for myself. I’ve learned to manage the pain and not let it take over my life. I’m assertive with health care providers, because I know what I need to feel better. Now I’m able to help other women who have vulvodynia.
If you are reading this because you are in pain, please don’t give up hope. It may take some time, but you too can find a team of health care providers who will listen and help you learn how to gain control of the pain.
Laura D. can be reached at firstname.lastname@example.org