National Vulvodynia Association

I’d like to share my experiences with both vulvodynia and chronic pelvic pain. In late 1999, I started having burning pain in my vulva. I figured it was just another yeast infection and bought Monistat, which didn’t help. The pain was severe. I knew it was more than just a yeast infection, so I decided to see a doctor. The gynecologist examined me and prescribed cream after cream, but none of them worked.
One night when the pain was severe, I went to the emergency room with my best friend in tow. At this point, I thought it might be a sexually transmitted disease (STD). The ER physician ran all the STD tests, plus a test for human immunodeficiency virus (HIV). All of the tests were negative. When he examined me, I heard him say, “You have a yeast infection from hell!!” He sent me home with a Diflucan prescription and an incomplete diagnosis.

Also during this period, I found out I was pregnant. I always wanted to have children and was elated. It was the main experience I looked forward to as an adult. Unfortunately, it was short-lived. I had what they call a blighted ovum, which means it is a false-positive pregnancy. After I was diagnosed, I always wondered if my symptoms had anything to do with the blighted ovum.

I continued to do research, because I wasn’t getting any better, and came across the word vulvodynia. It sure sounded like what I had. Among other things, I read about the low oxalate diet and calcium citrate. I figured it couldn’t hurt, so I tried it. My first doctor wasn’t sure what to do, so I found another doctor on the internet. I had to wait a while to get in, but I was hopeful. I took all my research with me and mentioned that I had already started the diet/calcium citrate and would like to try amitriptyline. The doctor was impressed with my research and put me on amitriptyline (plus Diflucan for a short time). At first I didn’t notice a difference, but after several weeks, I did. I had also started soaking in Aveeno oatmeal to soothe the vulva, switched my laundry soap, stopped using fabric softener, and didn’t use swimming pools. I am still on the low-oxalate regimen, but have started introducing some moderate oxalate foods back into my diet.

Eventually my doctor moved to another state and, once again, I had to find a health care provider who would be open-minded. Using the internet, I found Dr. Blake, who is excellent. He is so kind and really cares about his patients. Dr. Blake checked me out thoroughly and diagnosed conditions I didn’t know I had: vulvodynia, painful bladder, fibroids, and endometriosis. I mostly stayed on the diet, took amitriptyline and followed the self-help tips on the NVA website. Finally, I started feeling better. I still have symptoms of painful bladder, but I do manage. My vulvar pain went away many years ago, but I haven’t had sexual intercourse in a long time. I would probably have the vulvar pain if I tried being intimate with someone.

The NVA is such a wonderful resource. They do support, educate, and have an amazing list of providers to try, including Dr. Blake! The women who run it are very nice and knowledgeable, and it gave me peace of mind to find women to talk with who were going through the same thing. That is why I decided to become a volunteer support leader. I’m hoping that I can make a difference in other women’s lives. I’ve been there and am still coping with pelvic pain. I felt so alone for the longest time and then the NVA and Dr. Blake changed my life.