Tuesday, September 30, 2008

Vulvodynia vs. Synesthesia: When Your Ee-Yas Don't Mix

I have synesthesia, which simply put means that my senses are merged. Researcher Sean A. Day has a list of the different types of synesthesia and their frequencies. (I take credit as the person on his list with temperature > sound synesthesia.) If I were to explain what types of synesthesia I have, it'd be easier to say what I don't have: I don't taste or smell anything but sight (and even that is very faint), and I don't feel temperatures from anything but sight.

What that means for my vulvodynia is that on top of feeling the pain, I also see and hear it. The past couple days it's been pretty awful: it looks like minced-halloween-candy flambe and sounds like Lloyd and Harry screaming the most annoying sound in the world in Dumb & Dumber:

(Here is an embellished version that made me laugh...yeah, that's my crotch.)

I don't believe synesthesia exacerbates my pain, but I think it does predispose me to being more easily overwhelmed by my senses -- or annoyed, as the case may be.

Take, for instance, the concert I went to last night: Ryan Adams and the Cardinals, audience seated in a theater. In addition to my flaming crotch, the guy in front of me would not stop fidgeting: looking up the aisle for his friends, leaning to talk to the girl beside him, looking anywhere but the stage, never paying attention. He was making me so seasick I'm sure anyone sitting in my seat would've wanted to smack him. But in his incessant movement he was also overlaying the music with swoosh, swoosh, bumpbumpbump, swoosh, jumjum, thump, thump... I ended up shutting my eyes. What a dweeb.

Back to my crotch (of course). When the pain first started, I noticed I began experiencing music differently: if I came upon a particularly moving moment, I'd try to do my usual musical embrace and the pain would stop me short. It's like I used to feel the music with my whole body, and now part of me is grounded and unable to resonate.

Yesterday I was watching Sigur Ros's "Svefn G Englar" video for the first time. It is so beautiful, and the music is so beautiful, and I wanted to embrace the experience and bring up the inevitable tears and feel the sound and sight and emotion through my whole body. But there it was, my crotch, constant damper, drawing me back to reality.

At first I blamed myself for not being able to enjoy the video, as if maybe I'm so focused on the pain that it's more distracting than it has to be. Then I made this analogy: it's like you're in a movie theater and the person behind you won't stop talking.

Sigur Ros: beautiful music, beautiful video
Me: Oh my---
Crotch: Hey, can you pick up the kids tomorrow? I have a dentist appointment at 5.
Me: Just watch the video. Look at that shot! Isn't it---
Crotch: Who's that guy? Is he the one who's in love with the blond chick? I thought he was dead!
Me: Video. Wow, I can't believe---
Crotch: Wait, where did they hide the money? Wasn't it in the vault?
Crotch: Do you want more popcorn? Do you want more popcorn? Do you want more popcorn?

So...yeah. Not going to get down on myself for it. Everyone hates a movie talker, and I'm not feeble for not being able to ignore mine.

Watch the video:

Vulvodynia? Fibromyalgia? Try a Diet Change

As a follow-up to my last post, I'd like to say that if you have vulvodynia, or, for that matter, fibromyalgia or other chronic pain, try changing your diet. Try it for a week. I kid you not, I saw results two days after cutting out wheat.

Where to start? Maybe I'm biased, but I'd say start with gluten. Everything I've learned about food over the past sixteen months has indicated gluten as one of the biggest villains. Gluten is a protein found in grains, but the gluten that people mean when they say "gluten-free" is from wheat, barley, and rye (and, by way of cross-contamination with wheat, most oats). Check out glutenfreeforum.com for stories about gluten and pain -- including vulvodynia.

I'm not saying a diet change will relieve everyone's pain, and it certainly didn't (or hasn't yet -- optimism!) cure mine, but it's worth a shot. It's a few days of eating carefully, and if you don't see improvement in whatever amount of time you're able to keep it up, you can go right back to those Cheez-Its (mmm...have some for me?).

Hey, I loved Donuts to the end of the Earth before going gluten-free, and now I don't even care that they exist. That's how much better I feel: Endless Donuts Better.

Monday, September 29, 2008

Going Gluten-Free

Around the time I finally got the diagnosis of vulvodynia from my gynie, my aunt suggested to my mom that my mom's apparent arthritis pain might improve if she reduced or eliminated the amount of wheat she ate. My mom stopped eating bread and other foods containing wheat and within just a couple days she found her pain had significantly relented.

Encouraged by her results, I tried eliminating wheat from my diet. Two days in, the constant burning I had felt since the vulvodynia began was fading away. I still had residual pain that worsened when I did anything involving that area (which, you may not realize, includes things like laughing and coughing), but the acid burn was receding!

I started following a gluten-free diet, and I followed it very closely. I noticed that if I happened to eat gluten, about 24 hours later, my crotch would ignite and burn for four or five hours. Not only that, I'd also get pains in my shoulders, wrists, knees -- basically all my joints, pain I hadn't noticed before I'd changed my diet.

Over time, I found that I had more energy, and that accidental glutenings would have me collapsed on the couch. My crotch continued to improve, but only so much. Later in the summer, I tried removing corn (in its obvious forms -- corn of some form is in everything), and I found that when I reintroduced it, it gave me body pain similar to gluten, though its affect on my crotch wasn't as bad.

So over several months I tried tweaking my diet to see if any other changes would help me out. I had always had an instinct about refined sugar, so I cut it out and, lo and behold, within a few days I was peeing more easily! Still pain, but better flow. I also cut out dairy and soy at times, but they were largely out of convenience -- when you eliminate gluten, corn, and sugar, you pretty much have to make everything yourself.

I was able to stick to the diet because I believed that if I kept to it, eventually my pain would retreat entirely. If only bad food gave everyone pain, dieting would be so much easier!

But as I mentioned in my last post, my willpower collapsed late this summer around the time I visited the specialist. The week leading up to the appointment I lost it. I was careful to avoid gluten (by now I know where to suspect it), but everything else no longer applied. I gorged on mint chocolate chip ice cream, brownie mix, candy, Nutella, gluten-free corn-filled cookies, white mochas -- anything I could find that sounded tasty but respected the gluten law. And though I felt a little worse eating all that stuff -- and my intestines got pretty ticked off -- it didn't end the world or kill me.

I kept up the indulgence, mostly with Nutella. On Labor Day, I had corn on the cob, baked beans (corn syrup), a Pepsi (corn syrup), ketchup (corn syrup), bratwurst (corn syrup -- told you corn was in everything), and it was delicious. Then I got sick for three days, literally nauseous every time I ate, headachy, bad-gutty. Whether it was the amount of corn that did it or something else, I have no idea. I know no one else at the party got sick.

It was probably a good thing I felt awful after Labor Day. It gave me a non-crotch, non-body-pain reason to take some steps back towards a better diet. Because really, all this time, I've viewed the diet as a sort of voodoo science -- how can food significantly hurt my body in ways that are not traditional allergies when no one else seems affected?

In February, I went on gluten for three weeks in order to get a Celiac test, and if anything has convinced me of gluten's effect on my body, that was it. I felt awful the whole time and for weeks after. I couldn't get enough sleep, I ached everywhere, and I became severely depressed. And oh yes, the crotch burn. The Celiac test came back negative, but because I have a high-risk gene for it, the doctor wanted me to get a biopsy done as that's really the only way to diagnose it for sure. That's not going to happen. It would require eating gluten for three or so weeks again, and I refuse to do it.

So now to convince myself -- after I've already learned the lesson -- that improvement is possible with an improved diet. Now to stock up on my favorite gluten-free snacks (read: peanut butter) and get back into cooking. Or...now to let myself relax until my faith returns. My friend tells me that no one can be expected to keep to my diet, and she's right. Atkins, vegetarianism, veganism, it all looks like hedonism to me. But oh, how much better eating right makes me feel!

Sunday, September 28, 2008

The Fight is Gone

About a month ago, I visited a specialist on vulvodynia at the recommendation of my gynie. Leading up to the appointment, I was anything but eager. I had sunk to a new low mentally regarding vulvodynia and was wondering if despair was a stage of acceptance. I also had absolutely no interest in being poked and prodded and invaded -- the eight or nine months I had spent searching for a diagnosis still hung over me, and I felt like, specialist or not, this doc would be more of the same.

In the end, he was, mostly. The examination was fleeting -- no speculum, thank god; just a brief cotton-swab test to detect where I was most sensitive. As the Wikipedia article explains, the touch of a cotton swab can feel like the scraping of a knife when you have vulvodynia -- and it did. The doc said my vulvodynia was localized enough that I would be a surgery candidate if it came to that -- cut out the part that hurts and pull the vagina down to take its place. Lovely, I know. When I mentioned that my clit hurts sometimes too, he said surgery may solve the sex (intercourse) problem but not everything.

The doc didn't provide me with much information that I hadn't already gathered from the endless hours I've spent reading about vulvodynia online. He gave me a list of oral meds that might work to block the pain signals, but as I have bipolar disorder and the meds are anti-depressants and anti-convulsants, I have to clear them with my psychiatrist before I can try them. He mentioned that Botox injections have helped some patients, but that it's a new, unproven practice that insurance usually doesn't cover.

I asked him about hormone tests, but he said they weren't necessary for a young chick who's menstruating regularly. In the end, I walked away with a prescription for Lidocaine -- a numbing gel that he says has helped about two-thirds of his patients who use it regularly regain the ability to have intercourse -- and a feeling that while I hadn't been invaded, I was desperately without information once again.

I had leftover Lidocaine that my gynie prescribed me, so I tried it out for a few days in a row. Unfortunately, like everything except Vaseline, it just irritated my skin more, making it wrinkled and puckered. (Lovely...I know.) The script the specialist gave me is for a gentler form of Lidocaine, but I haven't filled it yet because...

I'm frankly in a state where I don't care to fight anymore. I used to believe that if I fought hard enough every way I could, somehow, someday, the pain would cease. I happened upon a diet change that significantly reduced my pain, a change I stuck to for over a year, but now, while I still respect it at its core, I don't follow the little tweaks I devised that helped me feel even better. I used to be open to medical treatments, but now I doubt so much that they can help that I don't even pursue them. I would rather ignore the possibility of improvement than embrace it because the pain has convinced me, in its years-long persistence, that it isn't going anywhere, perhaps ever.

But slowly I'm regaining my hope -- and my focus. I've mostly reverted to the good diet (which I will definitely share) after a month or so of self-abuse. I've still got the Lidocaine prescription in my bookbag, and someday it and a drug store and I will be in the same place at the same time and I'll fill it. In my heart, I fully believe that the pain is a permanent component of my being, but my head, refusing to judge my slouch, is asserting itself again and helping me help myself, guiding my hand when it's not too heavy or quick. It takes time. We break down once in a while. It's for good reason, and I think the best thing to do is ride it out until you have the strength to continue on.

Saturday, September 27, 2008

If It Were My Back, You'd Get It

Perhaps the hardest part of this whole experience -- besides the pain itself -- has been feeling like because it's my crotch, no one takes me seriously. And because it's my crotch, I can't tell everyone about it. And because it's my crotch, let's just leave the subject alone.

If it were my back that hurt chronically, I could say, "my back hurts," and people would know why my mood had suddenly sunk. If it were my back, people would ask about it routinely not only because they'd know about it, but because it wouldn't involve foul language. If it were my back, they would grasp the burden of it. They'd understand it to be a legitimate problem and not some obscure condition that can't hurt that bad, can it?

But no, it's my crotch, and it's a bad word. Let's not talk about it; it's impolite. It may not even be real, for all we know. It's probably just melodrama anyway.

To all the cowardly people out there who'd choose conversational comfort over providing support: grow up.

I don't know how to express how far just a little bit of outside investment goes when you're struggling with something like vulvodynia. The pain has changed my life. It's changed the way I exist. It's doused my sex drive, made me dread the toilet. It's intruded on movies, on music, on work and thought. It's changed the way I see dating and absolutely barred me from having sex. It's changed my self-image and my perception of the future. It's dragged me down with its slow tug: when it started, every day was the day it would end.

A single phrase from another person can stand up to all that assault -- even something so simple as "how are you feeling today?" It means I'm not going it alone. It means that somehow, through some spiritual mechanism, other shoulders join mine in bearing the pain's weight.

To those out there who know exactly what I'm talking about: I promise that once I get all this angst out of the way, my zillions of upbeat thoughts will pour forth.

Thursday, September 25, 2008

The Topic is Vulvodynia

I've been suffering with vulvodynia -- aka chronic, unexplained crotch pain -- for almost two years. In fact, our anniversary is October 2. The couple months leading up to October 2, 2006, I noticed that things were feeling kind of odd down there. I had some very low-level pain that suggested to me that I needed to drink more water. You know, "maybe I'm getting a bladder infection (UTI)."

On October 2, 2006, the pain descended on me in full all at once, and I thought I had finally gotten that UTI. Only the pain wasn't like past UTIs -- it didn't have me rushing to the bathroom; it just hung around all the time, hurt worse when I moved, when I peed. I chugged water, got antibiotics, but the pain stayed. I went to the urgent care clinic fearing for my kidneys, and the doctor told me I probably had Chlamydia. Looking back, I think, if only...

Repeat ad nauseum. Finally, June 2007, after innumerable doctors, irrelevant diagnoses (UTI, yeast, bacteria, neurosis, just-need-an-oatmeal-bath), and too much time in the stirrups, I visited my mom's gynie who told me right away that provided all cultures came back negative, I had vulvodynia.

I had read about vulvodynia. I was devastated.

Vulvodynia, doctors theorize, has many possible causes, most of which remain unproven. Vulvodynia has no sure-fire treatment, and it's chronic. Sometimes it goes away by itself, but many women march on for years under it. I was 26 when my vulvodynia started; some women are even younger. Some have never had pain-free sex. Vulvodynia was next to cancer on the list of things I didn't want to hear.

You can't understand chronic pain until you've had it. I've tried endlessly to relate my experience to those around me, seeking sustenance in empathy that only a few special people have been able to provide. I hope that by writing my experiences here, I will add another voice to the issue and provide some community for others who suffer alone.