Here's where I am in following the regimen Dr. Howard assigned me to treat suspected skenitis (inflammation of the Skene's glands):
Lidocaine (5% 3-5 times/day)
Lidocaine burns. You know why? There's PEPPERMINT OIL in it. Maybe lidocaine itself burns, but the burn I feel lasts a half-hour and is minty. It's the peppermint oil. Who the hell thought putting peppermint oil in lidocaine was a good idea? It's like putting Vick's VapoRub on a sunburn.
After the burn fades, I get about a half-hour of numbness-ish. It numbs my skin, but only on the surface, so there's pain remaining underneath. Then the numbness goes away. So there's not been much point in using the lidocaine, and I stopped because I didn't want to feel that burn again and again.
I have the number of a compounding pharmacy, and they gave me a quote on getting lidocaine from them. I need a prescription from Dr. Howard to do that, but I haven't acted on it yet. I want to find out if lidocaine ALWAYS contains peppermint oil, and, if not, I'll find some at a regular pharmacy and try that first. But I haven't acted on that yet either because I'm just generally pissed at lidocaine.
Valium suppositories (5mg 2x/day)
I put 5mg valium tablets (just the regular oral tablets, no special suppository) in my cooch twice a day. Sometimes I think they help, sometimes I think they do nothing. My pain varies by itself, and across six years with all my pattern-seeking skills applied, I still cannot say with certainty what causes the ups and downs of my pain. For example, last night I had an ugly flare that at one point had me on the toilet for relief -- not to pee, just to have my cooch not touching anything -- with my pillow propped up so maybe I could sleep. I had taken the maximum amount of Gabapentin I take at a time (1200mg) and inserted 10mg of valium, and my cooch was still raging.
THAT was a moment that I needed Vicodin or Percocet or some other serious painkiller, if only to quiet the pain enough to let me sleep.
I've never been prescribed painkillers, but a friend did give me some Vicodin once. One Vicodin didn't help, a second one reduced my pain to a squeaky point of light -- and then I was asleep. I could've used that last night. The emotional torment ---- I mean, it is demeaning to sit on the toilet with a pillow trying to sleep, and it is still, after all these years -- it is still disgusting to have this pain in the area where it is, this area associated with purging and sex, the most intimate things a human does. Ugh. Gross.
I'm thinking of asking Dr. Howard for painkillers for moments like those. Maybe he will refer me to pain management, though.
Doxycycline (100mg 2x/day)
I seemed to be having a bad side effect from the doxycycline. It was making me very drowsy, to the point where I had to lie down on the floor at work and take a nap before driving home one day. Not good! Very not good.
I called Dr. Howard's office to tell them about the side effect and Dr. Howard switched me to Macrobid -- an antibiotic generally used for UTIs -- instead of doxycycline. I was on Macrobid for a month about three or four months after my vulvodynia started in 2006, and it did nothing. When the nurse told me on the phone that Dr. Howard was switching me to Macrobid, I was all, "Ha ha, well, maybe three months will cure me even though one month didn't!" I am never witty enough to say something like what I said later to myself, which was, "What the fuck is the point in taking Macrobid for three months if it didn't work in one month six years ago when the hypothetical infection was new?"
So I ignored the switch to Macrobid and started messing around with doxycycline and food and water and all the other meds I take, and I have only had one episode of drowsiness since then, and it wasn't sleep-on-the-floor critical.
In general these past couple weeks, I thought I was feeling better -- from the valium, I suspected -- until that flare last night. I can't explain that flare. Earlier yesterday, I had to sit on uncomfortable seats for a while, so it could've been a pain echo from that (which is not uncommon with vulvodynia). I'm analyzing everything I drank, everything I did...
I've had bad pain reactions to antibiotics before, so I hope it wasn't that. We'll see.
My period has continued, though in really slow, gross form. I think it's stopping, though. And I was able to Nair all the Wolverine hair off my shoulders and upper arms, the stuff that grew in from the steroids, and it is making me feel much better about my body.
I am less depressed due to good brain med changes, and I am trying to remind myself that getting upset about vulvodynia is not the same as transitioning into depression. Anyone would get upset about this shit, no matter the status of their mental health. It's just hard to remember that because this is happening every day, all the time, so it's messing with my head all the time. I'm trying to teach myself to measure depression in terms of how I'm functioning, not how I'm feeling. If I'm saying how I hate myself, how everyone hates me, if I'm lying in bed all day, if my house is a mess, that means I'm depressed. If I'm on top of my life and not hating myself and not fearful of others' judgment but I'm crying about vulvodynia, it's the vulvodynia.
I've been having a hard time looking forward and believing in the future, and it helps to read the Facebook vulvodynia groups and remember that there are women everywhere going through this.