I am 75 years old–I live in the Midwest and have led a very active life: exercising five times a week, golfing, volunteering, reading, and gardening. I have had lichen planus for several years, a disease that can cause pain while sitting, but it has not effected my quality of life. Then, in February of 2015, after driving eight hours to visit my daughter, I had an extreme sudden onset of pain. My active life suddenly changed. Thinking it was related to the lichen planus, I first went to my dermatologist. I was diagnosed as having vulvodynia.
I have had pain every day for seven months since this diagnosis. I went through multiple tests to try and determine the cause, but no cause was pinpointed. I was treated with amitriptyline and gabapentin up to the highest tolerable doses. There was minor relief, but the side-effects were equally as life changing: extreme constipation; very painful dry mouth; canker sores; and, most significantly, loss of short-term memory and loss of word retrieval in conversing. For four months I was unable to do any of the activities I previously enjoyed. Even sitting in church for an hour was extremely difficult.
I found a specialist at a large university hospital who confirmed the diagnosis and treatment. She ordered a few additional creams that had no results. She then suggested a pudendal block as the next step, with the goal of getting the pain level to a five, and to begin to bring back a lifestyle I could manage.
Sadly, after four different types of blocks, I had no relief and continued to have pain many days rating up to 10. I have learned to cope by managing the amount of time I sit each day, using some home remedies, trying to enjoy my garden, and making choices between activities I could tolerate.
I have most recently found a vulvodynia clinic at another university hospital and we are starting over and working together to find the right balance of medications and dosages. I am slowly building my strength back up after being able to do very little for seven months. I’m beginning to sit and read, socialize and continue to garden as I can. However, it is a very slow process. Some days the pain is a five and some days it is still up to a seven or eight, even after just light activity.
Throughout this process, I have had to educate many physicians, friends, and family on this condition. I was fortunate to be diagnosed quickly, but finding the right team of specialists to manage my treatment and my expectations along this journey has been a challenge.
My hope is that I will continue to get stronger and regain my daily schedule, and some day wake up without pain. I also want to help educate the medical community so others with this condition can find experts and relief much sooner than has been my experience.