The first appointment will probably be just an hour long, so I'll drive 4 hours to Rochester, have the appointment, then drive back....I'm thinking of staying over and having a relaxing evening at a hotel. Mmm, hotel bed. If it snows, I can take the train! Yay!!
If we move forward from there, I expect my next appointment will involve a trial nerve block to see if it helps my pain. Rochester has a pamphlet describing it all (PDF).
I'm trying to remind myself that I can't assume this is the end of the road for my pelvic pain. For one, I don't expect it ever to be cured at this point. But also, I don't know yet if a nerve block will help my pain. If it does, I will do some kind of earth-thumping top-of-the-world dance regardless of how well it treats my pain. Because if it helps, it means my pain is neurological. And if it's neurological, it's not a mystery anymore.
Dear reader: don't despair that your pain might be around forever. I remember the fear I felt when my vulvodynia started, specifically one night early on, before diagnosis, lying in bed thinking about vulvodynia and interstitial cystitis and how the two have no known cause or cure. I was so afraid the pain would be around forever that I jumped out of my bed in a panic. My body moved without me. I don't know how I can reassure you if you're in such a panic. But I can say that now, after six years, the thought of having pain for the rest of my life is not the same kind of scary. And I am better at not thinking about it, which helps a lot.
Let me show you something that I hope will make you laugh. It made me laugh/cry, which I think is better than not laughing at all. It's part of the pelvic-pain questionnaire from Dr. Howard's office, this part asking about the words you might use to describe your pain and how serious you feel each type of pain is.
Throbbing shooting stabbing sharp cramping gnawing hot-burning aching heavy tender splitting tiring-exhausting sickening fearful punishing-cruel.....what words!! It reminds me of Edgar Allan Poe's "The Pit and the Pendulum."
That X in the right margin is me marking the worst part of my pain on the previous page's diagram -- the URETHRA. RIGHT HERE.
Here's a list of doctors who treat pudendal neuralgia, and a list of symptoms that might help you determine if it's worth it to get checked out for PN.
Thanks to a reader who has advised me on pudendal neuralgia!!