Dealing with Undiagnosed Vulvovaginal Pain
Imagine this: Your favorite pastime is reading a book and enjoying a cup of coffee. Now imagine that you’ve been struggling with chronic pain for most of your life. You have a hysterectomy to deal with some of the pain, but you wake up from that surgery with pain that makes it painful to sit. Reading with a cup of coffee is out, as is driving to book club, so now you can’t socialize like you used to. Now you spend most of your time in your room, in bed, alone, and in pain. This is life dealing with undiagnosed vulvovaginal pain.
Meet Mary. Besides being an avid reader, she also used to play the violin. But she struggles to do that too. She needs our help. Here’s the rest of her story:
I’ve spent most of my life with chronic pain, not all of it gynecologic in nature. I have complex regional pain syndrome, but also some vulvar pain & sensitivity that hasn’t been diagnosed yet. After having a back issue fixed, I was able to sit for at least the length of a movie without agony. My day to day vulvovaginal pain was minimal at that point.
In January 2023, I had a hysterectomy, and it was after that that I started having extreme vulvovaginal pain. It was painful to sit again, and felt like I had a foreign object in my vagina. I had burning, shooting, tingling, and aching pain coming from my vagina, urethra, and the labia. I’m also extremely sensitive to touch, having to use the softest toilet paper (which still causes pain). I can’t wear underwear, and pants are painful too.
I try to avoid leaving the house, but when I do have to go out, I wear a dress. I wear nightgowns at home all the time, but now that it’s getting colder, I worry about what I will do. Sitting is excruciating so instead of sitting with my parents at night and watching TV together, I lay in my bed upstairs by myself. I’m in my bed a lot more than I have been in a long time.
Finding a doctor who can diagnose everything has been my biggest challenge. I can’t travel, because I don’t drive and it’s painful. Some of my other conditions require IV fluids twice a week, and that makes it difficult too.
I’ve seen 3 doctors in my quest to find answers, including the one who is treating me now. That’s how I got my pudendal neuralgia diagnosis. I discovered it, presented it to him, and he agreed.
I would like to consult with Dr. Corey Babb because I believe I have more than just pudendal neuralgia, and I’d also like to learn about other options beyond the nerve blocks I’ve already had, and pelvic floor physical therapy which I’m planning to start soon.
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