Friday, May 15, 2015
And my pain is back to a lower-than-usual level. I don't have the burning I had on the face of my vulva when I was trying to kill the yeast using methods meant only for normal vulvas. Vulvodynia does not like Monistat, nor does it like even the tiniest drop of tea tree oil, which is not normally a bad method for fighting yeast according to the ultimate guide to yeast infections.
I think my skin's overreaction to topical treatments (even lidocaine; I need the compounded version) means there is some idiopathic vulvodynia going on, something that is inexplicable. Maybe it's driven by neuralgia, but I think it's just stupid undefined stupidity that a lot of women have that is undefined and stupid.
My pain still doesn't like most foods, and it's not thrilled with sitting, and it doesn't like moving around, and peeing is still painful. But it's better by a degree or two. Wait. Wait here.
I went to the bathroom and punched my stomach a lot. The site where the doc gave me the shot is really really sensitive. Two weeks later? And the general area on each side of my bladder/uterus/whatever, the pantyline but spread inward, is really sore, as usual. Those are the genitofemoral trigger points. But poking everything didn't radiate pain to my vulva, which is good.
I feel it's important to remember that my pain STARTED as pain just below my bladder/above my clit/however you want to put it, and it included increased pain with peeing that would RING and RING and RING for a half-hour or so after peeing and then die down. And moving was problematic. In other words, maybe getting rid of the pain means moving back through the stages of pain I've had. Peeling off the layers down to the start of it. Because it has certainly gathered more and more pain-fluff around itself over time.
I can't give up peeing, and I can't stop moving (well, if I want to get paid), but I can stop sitting so much and I can keep eating carefully. GOD EATING CAREFULLY IS SUCH A BITCH!!!!!!!!! I can't eat fruit anything (bananas are okay) or tomato anything or spicy anything or sugar anything or coffee or tea or chocolate or anything!!!!!!!!!!!!!!!! Gluten-free is NOTHING COMPARED TO THIS SHIT. I wrote my doctor a note on MyChart telling him DUDE YOU NEED TO LSITEN TO ME WHEN I SAY FOOD IS BAD (minus caps, typo, "dude," and anger). I don't know if there's anything he can do to help except tell me not to eat things that hurt... THIS DIET IS RIDICULOSU. I really don't think I have interstitial cystitis but my pain is so sensitive to food that I feel like there must be a connection. A lot of people with pelvic pain report that their pain is sensitive to food. WHY WHY WHY WHY I'm not editing this blog post. It sucks but this is the only place I write down crotch shit and I've gathered that seeing someone else freak out about her crotch helps other people with crotch problems. THIS IS ME FREAKING OUT!
Tuesday, May 12, 2015
I can't believe I have this pain. It doesn't seem real. It seems like I should be able to think myself out of it. Like when you're in a dream and you die and you're like "Okay, let's say I didn't die" and you're not dead anymore.
I am running through Duolingo.com brushing up all my French categories and today I had to translate "La tortue est verte" -- the turtle is green -- and I realized it's been a long time since I thought about how turtles are green. I know it's a grownup thing, that more items populate the mind and we don't care what color turtles are anymore because we know they're green, it's a fact, we're done processing it. But I don't want to stop thinking about how turtles are green. That seems like the most important thing in the world.
It's sensory. "The turtle is green" is a way of saying there are a billion things to sense besides pain. It's just hard to sense any of them when you're in pain. And after a nerve block, all I do is monitor my pain. There's no other sensation that matters.
I don't want to keep doing the nerve blocks. It's much easier to be in pain than to keep hoping for the pain to stop.
Wednesday, May 6, 2015
My pain has changed. In fact, it's changing all the time. I have some burning, but I think I also have a yeast infection. (TMITMITMITMITT.) So I can't tell if I really have burning or if I just have a party. A party I've tried to douse with things that burn so bad (Monistat) that I can't keep using them.
There's this thing out there called YeastAway or something stupid. It has boric acid in it along with other less proven yeast remedies. And it doesn't burn. And I have to find it but you have to keep it in the fridge so I have to go to the places where they keep things in fridges but all those places are much farther away than depression wants to drive. Well, I went to one. And they only had regular probiotics. No YeastThingThatGoesInTheCooch.
The good thing about YeastWhatever is that I rarely have to use it more than a few days. So I keep the leftover things in my fridge until beyond when I probably should and use them whenever I feel yeasty and so far I haven't started any new species that I know of.
I think Amazon carries it. Maybe one of these days I'll check.
The other change in my pain is that, like, imagine there were a rod poking through your clit and into your bladder. And as you move around, that rod zings and pinches and zaps you. But if you don't move, you can't tell the rod is there. This pain isn't new. I've had pain with movement all along. It's just extra-zingy now, and it's also extra-focused. It used to be spread all around in three dimensions and now it's essentially one-dimensional pain. And I don't know if it's like this because other parts of my pain have peeled back or if it's a new and maybe temporary phenomenon caused by the nerve block.
Once my crotch recovers from the Monistat burn (tried it again this morning, duh duh duh duh duh, it's like I tripped and sat on my iron for a minute), I might be able to tell what's going on. In the meantime, I'm going to try to leave work right when it's time to leave instead of curling up on my desk to take a nap.
Friday, May 1, 2015
I posted this on Facebook today:
Some cultures are superstitious about the number 4 because it is a homophone of "death" in their languages.
Yesterday I had the 4th right-side genitofemoral nerve block that immediately took away my pelvic pain. But none of the 3 previous right-side blocks have resulted in continued relief of my right-side pain. And while my left-side pain is still low, the right side turns out to be the main dragon down there.
What that means medically = a lot of big words.
What it means personally = we die & are reborn many times over the course of our lives. These years of pelvic pain have seemed to be cycles of death without rebirth. Every time I think I have finally completed a cycle of death, I resuscitate to something that is not quite life. The pain is still there, and I am still in every moment managing it while carrying out the actions of a living thing.
Let 4 be worthy of superstition. Let it be synonymous with death; let my pain respond to the steroid this time and, if complete relief is impossible, let it at least lessen to some degree. Give me space to forget once in a while that I have pelvic pain. Moving around yesterday while the lidocaine was still in effect, I remembered how easy it is to get off the couch, to step over the cat, to do all the daily functions I force my body through. I am willful; I am proud; I do things my pain doesn't like because if I can't kill it, I can at least tell it to fuck off by ignoring how it whines. Maybe I should be more careful with it, but I am too angry. If it is a dragon, I am one too.
If I manage to kill my pain someday, I don't know what my life will look like. Pain and anxiety are by now my life's ballasts; I don't know if there is anything else holding its shape. If I crush both, will I fly up like a feather? How will I reconstitute into something stable and alive? If I don't look to the other side, where I am rid of these things, will they ever leave me? Are they still here only because I am too afraid to let them go?
I just want to add a few notes.
- This is actually right genitofemoral block #................ 7? But only 3 previous right genfem blocks caused immediate pain relief.
- The skin at the site of the nerve block was still numb this morning, and even tonight when I removed the band-aid (I always forget to remove them) it felt numb in a subtle way. I think the doc numbed the site extra extra extra well this time as I can usually feel the nerve block needle poking around and the actual block usually hurts as a consequence. I couldn't feel it at all yesterday -- just the slight pressure of it moving into place. The doc, as usual, let me watch the needle move around on the ultrasound screen as he injected the block. I think it would make some people sick, but it calms me down.
- The site of the block has, at the same time, been very sore all day, and it seems to be getting worse. I'm watching for infection. The pain is mostly with movement.
- Peeing this morning was still mostly pain-free, but shortly after I got out of the shower, my pain shot up like a firecracker. It's been up and down all day. The pain is still almost entirely on the right side.
I'll keep you posted about progress.