Just a quick note to wrap up my "lie down a lot" experiment.
As I said in my last post, after a few days of lying down, my pain had receded to the point where I experienced Practically Painless Peeing! It usually hurts every time I pee, the whole way through. Practically Painless Peeing means that it hurt right at the start and then didn't. Nice flowy careless urination.
The burning sensation also disappeared from my vulva. Usually, I get burning from the perineum on up, especially south of the urethra. But after some lying down, the burning was gone, and I was left with a different kind of pain just from the urethra on up. The remaining pain was the first pain I had when this whole ordeal started (and that is with me every day) -- it feels like it's inside my body, right above that urethra-clitoris expanse (really, the bladder, but maybe more immediately inside). I was still sensitive on the surface, but in a different way -- not that sparky acid/burning feeling. And as usual, when my cat would walk on me and step on my bladder....ahhhh! I've developed a habit of guarding my bladder when I see she's on her way.
I also should say that any stabbing pain was gone early on, before the burning left. The burning and the stabbing (dear lord, this is not an episode of Criminal Minds!) seem to be dependent on contact, sitting, sex, exercising, all that "use" stuff, at least for me, so it makes sense that they fell off with limited movement and use. The other pain? No idea. I think that pain gets better with a better diet, but it's been so long since I paid attention (or tried!)...I'll have to do another experiment!
As soon as I started moving around a little more and sitting (my patience for lying down crapped out, in part because my back and my bed weren't getting along), the pain crept back. I spent the last day mostly sitting up and I did some chores around the house, but by the end of the day I was in vulvodynia meltdown. I'd put vulvodynia away in its little box for a long time -- like, years -- not thinking about it any more than I had to. Doing the experiment and paying attention to the pain and going through hope and letdown and plotting the next move -- it was like someone putting rocks on my chest as I floated on my back. I didn't fall asleep until five the next morning.
The past couple days I guess I've been trying to recreate a feeling of control. I can find a doctor, I can get treated, I can go back to eating better, I can lie down in the evening and on the weekends, etc., etc. If I feel like I have some control, I can avoid meltdowns and take action. I think the denial early in the illness -- it's going to go away! it's going to go away! -- was a way of preserving a feeling of control. And it gave me so much motivation. I'm way past denial now, so this time developing that feeling of control will require a more sophisticated approach.
One more note --- I didn't do any massaging or physical therapy while I was lying down because that would've tainted the results since I don't normally do it, but I did check in with my muscles.. They were not relaxed, which I was actually happy about. The pain got better even though I wouldn't stop clenching my butt, which to me means it's probably not a muscles-only issue. (I had a run-in with a doctor who told me it was all muscles...she pissed me off. Take that!)
I think I clench my muscles to keep everything in place. Movement hurts, and I developed the habit to cope with it. So sometimes when I'm lying in bed, I guide myself to relax my pelvic muscles with a little trick I figured out, which I've named Poor Man's Biofeedback: I put my finger on my perineum and think, "relax here." And my muscles drop. If I'm touching that spot, I can tell what my muscles are doing, and my pelvis and my brain both know where to relax. I do the same if I have a headache or a jaw ache: touch my finger to a point on my face or jaw and tell myself to relax at that point.
OK I proofread this and a lot of words were missing. Like "cat," which is a pretty important word in that sentence. So I hope it makes sense. Nothing super-illuminating, but that reduced-pain pee??? There. THERE is some motivation. It is a reminder of what I felt like before the pain and a promise, almost, almost -- the universe promising that my sweet dear, you can be there again!