The Q-tip test showed that while I still have pain in the Skene's glands, the worst of my pain is now (or was today) in the vestibule. Dr. Howard pointed out (to me in the mirror) that I have slight tears at the 6 o'clock point in the vestibule. The worst of my pain is at a higher point on either side, however. He was encouraged that the pain in my Skene's glands is lower. I, of course, am wondering if the pain is just walking around!
I told him that I also have clitoral pain, which he said is almost always a separate problem from vestibulodynia. I said that my gut says that the vestibulodynia is due to muscle issues while the clitorodynia is due to something else, and he said, "I'll be frank with you -- that's usually the case." He told me that clitorodynia is usually due to entrapment or impingement of the clitoral branch of the pudendal nerve.
Neurontin makes me sleepy at the doses I need to take it for pain relief, so the doc decided to put me on a tricyclic antidepressant -- Norpramin (desipramine). Tricyclics are commonly used for pain relief. There are two others if this one doesn't help or if the side effects are too bad. I'm starting at 10mg and will titrate up to 50mg or as far as I can go.
The doc told me he has a colleague in Phoenix (this guy) who does surgical release of the clitoral branch of the pudendal nerve. He said it's 30-65% successful (he always has these specific numbers) at resolving clitoral pain, and it's an option of I don't see improvement with meds and want a more definitive resolution to the problem. He said I'm not a candidate for the pudendal surgery they do at Rochester, but his colleagues at U of R have done hundreds (gahhhh) of vestibulectomies if I want to treat the vestibule pain by literally cutting it out of me.
An hour later and I get to drive another four hours back home.
I feel like today I've learned that my pain is not simple. I feel like I can step into some new territory where I have to deal in nuances in order to make progress instead of hoping for wham-bam answers.
I asked the doc if neuropathy ever resolves itself. He said that he's seen it when the pain is due to scar tissue and the like, but entrapped nerves stay trapped. So there is some hope that this pain will resolve if we get it low enough with the tricyclic (or with Neurontin), which I'll keep in the back of my mind but not rest on.
I think I will work on my muscles so I have a shot at getting the vestibulodynia to a lower level. That has receded when I've eaten well and when I've spent lots of time lying down, so I know it's possible. I guess that means I should work on my diet too. Oh dear! I want donuts!
I don't know if I have the energy to do all of this. When I was in grad school, I kept a spreadsheet of my pain and what I ate every day and made some real gains. I don't know why I have less energy now. I guess my life is kind if gray, and it wasn't then.
So there's the next puzzle. How to get my energy back. My joie de vivre.