Monday, December 29, 2008

Yes, You Can Ask

I didn't express it to him at the time, but I was a bit taken aback when a close friend asked me if it'd be okay if he asked about my peach once in a while. Was I comfortable discussing it? Because I certainly didn't have to if I didn't want to.

I thought the fact that I have a blog about it whose posts I willingly share would be enough to indicate that I'm pretty damn comfortable talking about my crotch problems. But if this guy -- one of my best friends forever, someone with whom I've been sharing my most intimate thoughts for over a decade -- wasn't sure how to handle the subject, obviously it needs further clarification.

I can't speak for others with vulvodynia, but here's my position on it: yes, you can ask. Of course you can ask. Ask like it were a broken leg, or job loss, or a divorce. Yeah, some of these things take tender mentioning, but they're all trials that ease with others' support. Vulvodynia is no different.

Now, I have no interest in talking about my crotch every second of the day, or even every day or every week. It's boring and any gains I make happen so slowly that daily updates are pointless. But like any other human going through a rough time, I need to know that others support me. How can I know that if others never ask?

I fail to understand why people treat vulvodynia as separate from any other medical or personal condition. Are we all so shy that we can't discuss chronic coochie pain without blushing? Please. Pretend it's my back and then ask. I need to know that you care more than you need to tiptoe around the existence of my lady parts.

For the record, this friend of mine is one of the least shy people I know, so for him it was probably about not knowing my comfort level with it. And that's why I can't speak for others with this problem -- I know some women might be extremely embarrassed or uncomfortable about discussing their vulvodynia. Some women don't even mention it to doctors to get help for it.

But as far as I'm concerned, ask away. And ask others in your life who might be struggling with some tough-to-mention subject. We can only benefit from each other's support. We're here on this planet first and foremost for each other.

Addendum: Please also feel free to ask me questions about vulvodynia or any other topic I discuss on this blog. I've added an e-mail address to the About Me section so you can reach me. (My real e-mail contains my last name, so I made a new one to avoid being stalked and having my car spray painted with vajayjays...though that might be a favor; can't say I haven't considered it.)

(Please don't spray paint my car. I'd like artistic command over the project.)

Thursday, December 18, 2008

My Crotch is a DJ

A few weeks after my coochie ignited her eternal flame, I bought Mariah Carey's Greatest Hits. Two years later, I finally understand that the purchase was not random.

Those first few months, I'd sing "Can't Let Go" while waiting in bus-stop booths. I'd clean my apartment to "There's Got to Be a Way" -- because it makes me feel like I'm in a movie montage, and that's the only way to clean. I'd dance over and over to the ultimate achievement of Mariah Carey's career -- indeed, of the entire 90s decade -- "Always Be My Baby."

(For a fashion shock, check out the "There's Got to Be a Way" video.)

It's not like the purchase was so out of line with my tastes. I don't discriminate against good music, and I'd always passively appreciated Mariah. At one point in junior high I had an ice-skating routine going to "Hero." For real.

However, shortly after my pain set in, I had to own Mariah Carey. I had to have her on my hip so I could listen to her at any moment. I lived Mariah for several months in a row, dwelled inside the two CDs of her Greatest Hits and then a greatest hits I made of her Greatest Hits so I wouldn't have to change discs. I crunched across frosted grass in the wispy fog of "I Don't Wanna Cry," sped down the odd-angled rainbows of "Emotions," and bopped inside the Care Bear world of "Dreamlover."

(I scraped my neighbors' brains off the stairwell as a courtesy.)

Mariah turned out to be the ultimate form of escape. She's in love or out, or she's movie-montaging; that's all. In "Always Be My Baby," she's doing all three -- in love but out and, well, maybe rolling credits or something. Her world is crystallized emotions, paused moments, ecstasy or devastation in a single efficient melody, all while sporting the iconography of a coloring book.

That's why my crotch didn't throw on Celine, Whitney, Cher: Mariah's the one surrounded by butterflies. Mariah is an escapist, and she led me away.

Eventually I started to mix things up again, stray from straight Mariah. My crotch had me queueing up Carrie Underwood and Tom Petty with Otis Redding and Aretha Franklin, and it was the best playlist I had ever heard. I went through country, rock, and soul to bluegrass, operas, and requiems -- with a huge Britney detour -- and I've arrived recently at electronic sounds: Duran Duran, Depeche Mode, and Eurythmics/Annie Lennox.

But Mariah, you will always be the beginning and the end when it comes to my crotch. You are the distraction and the hope I need to keep moving on to that future Someday, that One Sweet Day when I will Make It Happen, whatever It is. Any Time I Need a Friend, I know you'll Be There. You tell me again and again that There's Got to Be a Way, and Mariah, I Still Believe you.

P.S. We'll have to agree to disagree on the Christmas wish-list thing.

Tuesday, December 9, 2008

The Pepperoni Pizza Hypothesis

I'm up again, unable to sleep. Sleep will come, but it's taking a little while these days. It's finals week, so that's my background stress, but the pain has been distracting me every night since Saturday.

I eventually talk myself around the pain and into sleep. I get cluster headaches; if I can talk myself into sleep as one of those tapers, I can do it with a moderate crotch flare.

Really, what gotten me about the pain the past few days is the worry -- is it still there? Do I have to pee? What if I fall asleep and I have to pee? Some people with interstitial cystitis pee fifty times a night. My heart goes out to them.

Last night, after going to the bathroom a couple times, I had to pee again, but I told myself I didn't and fell asleep. When I woke up, the pinching pain that I had fallen asleep with was gone, and I had a full bladder but no urgency.

Which brings me to my hypothesis: a good portion of my pain, at least, is referred from my intestines, as researchers concluded in what they call the Pepperoni Pizza Hypothesis, which I wrote about earlier. I don't know why or how, but I do know my gut's been messed up with IBS for at least a decade and that I had a major intestinal, uhm, episode shortly before my vulvodynia set in. My crotch is raging and I've been funny-tummied for days: coincidence?

I'm still being vegan, and I still want to try going raw for all the claims its subscribers make, but I think my next step might be to switch to a really, really intestinally friendly diet and see what happens. Another experiment on my body, only this time with a more definite theory.

Whether my hypothesis is correct or not, I have a motto: I will find answers. I write it down so I can see it, on my walls, in my notebooks, here. The answers may not be contained to a diet change, I realize that. But somehow, I'm going to suffer through this thing and come out the other side with useful information. I'm not spending all this time hurting just to magically recover and never look back. I'll get through it, I'll find answers, and then I'll shout them from the top of the world.

Monday, December 8, 2008

Raging Pain, Raging Rage

Okay, you know what? NO. THIS IS NOT HAPPENING. I have been in a flare the past two days because I ate some potato chips I suspected of being gluteny but remained unconvinced about. Or that's my theory; I don't really know for sure. All I have to say about that is, what kind of universe am I living in?!

The pain's been so bad that the past two nights I have been unable to fall asleep. I finally did get some sleep both nights after talking myself down into it, which I've gotten pretty good at over the years.

Last night I tried Lidocaine -- a topical numbing gel -- as well, but, as usual, it did nothing. Or, if anything, it made it burn more. This morning the pain was still crazy, and by the time I got to school I had been sobbing on and off about it for three hours. So in hopes of stemming my crying before meeting with my advisor, I went to the bathroom and rubbed some more Lidocaine on, thinking that miraculously it would make a difference this time.

But once again, it didn't do anything -- and this time, I can clearly tell that it's made the pain worse.

I would just like to say pubicly to the brilliant doctor who prescribed me the Lidocaine: genius. You were the biggest ripoff of my life. $500 for you to tell me things I had already learned over the course of my endless research. $500 for you to ignore my concerns about a possible other condition (interstitial cystitis) and lump all my symptoms under the umbrella of your speciality. $500 for you to treat me like a car in for a lube -- a tube of numbing gel that I told you made my pain worse. $500 for you to send me a survey about how my vulvodynia makes me FEEL, because don't we all know that's the kind of research that's going to lead to a cure.

I'm sure there are good doctors out there studying this condition. This guy is not one of them.

$500, insult to injury. Five hundred dollars! Hey, can I be a vulvodynia doc too? Wham bam thank you ma'am!

Okay, I just need someone to be mad at because my crotch is on fire and I have a final to take in forty minutes. And there's really nothing I can do about the pain at this point. Pain killers won't work. Ice would, but I don't know where to get any, and anyway I don't know how I'd sit on it during the final. At least I'm not worried about the test itself. I will do fine, if I manage to concentrate.

And then I will go home and do whatever the hell I can to transition out of this flare. Which might include mailing some hatorade to a certain doctor at the Cleveland Clinic. Bozo.

Update: There's nothing like a good old-fashioned computer-science test to soothe my mind. My mood has reversed. Now I'm going to make lentil soup, and when it's done I'm going to pour it all over my body and go to sleep.

P.S. I think I did a really good job not swearing above.

Thursday, December 4, 2008

Coming to Terms, and a Recipe

The past couple weeks or so have had me coming to terms with certain parts of this chronic pain mess. First, I'm pretty sure I would be diagnosed with interstitial cystitis, whether or not I actually have it: I pee frequently; it hurts every time; I have occasional urgency; my bladder hurts as it fills and it feels better after I go. Check, check, check, and check.

Plus, the kicker is that I started following the IC diet -- or I at least started avoiding the top triggers (fruit juice, tea, chocolate, alcohol, multivitamins...and my beloved peanut butter), and yeah, my symptoms got slightly better. For instance, if I drink a glass of red wine, I'll feel more urgency and movement-induced pain for a while afterward.

That's not vulvodynia as far as I know. That points more towards IC.

Of course, I still have the vulvodynia, I know that for SURE. And while I titled this post "Coming to Terms," I know that accepting that I benefit from the IC diet will only make me feel better. It's more that I'm coming to terms with not being able to eat peanut butter and drink orange juice.

Another thing I've come to terms with is that sitting around in jeans all day really is not good for my hooha. Big duh, right? Jeans don't immediately pain me, but when I wear them on my seven-hour school days, by the time I get to my evening class I can hardly stand to sit anymore. That crotch seam is in the perfect place to set me off.

So I switched to skirts -- yes, at the onset of winter. On the phone with the guy I'm kinda dating, I said I had worn a skirt that very cold day.

Date: What, do you have a screw loose?
Me: Yes.

Not a bad way to put it. I have a screw loose. Oh, that's going to be an interesting conversation, if we ever get that far.

But wearing skirts isn't so bad. I love my skirts. I have a ton of them and I hardly ever wear them. And wearing skirts means I'm free to acquire more skirts! More skirts! Maybe even from the thrift store!

And finally, the last coming to terms I've done is realize that though I may not remain vegan the rest of my life, this veganism experiment has changed the way I eat forever. Since I'm trying to get as many nutrients as I can without taking (possibly pain-inducing) multivitamins, I realized that eating grains wasn't going to help me much. They're basically pointless nutritionally relative to fruits and veggies. So I've gone without grains (no bread, pasta, rice, rice cakes), and it's been really, really easy, and really tasty. I eat like nine servings of fruits and veggies a day, plus some beans and seeds and nuts. It may not sound like much, but it fills me up, and I feel pretty good, too.

On that note, here's a recipe for the chili I made a couple days ago. It's not Promethean, but it's so very, very, very, very, very tasty (and spicy!).

Esther's Ugly Chili

olive oil
2 cloves garlic, chopped tinily
2 medium onions, chopped uglily
5 gigantic tomatoes, pureed
1 green pepper, chopped uglily
1 red pepper, chopped uglily
salt, pepper to taste
crushed red pepper to taste
white pepper to taste
cumin to taste (me = tons)
1 cubanelle pepper, chopped tinily
1 jalapeno pepper, chopped tinily
1 wrinkly orange hot pepper, chopped tinily
1 can kidney beans, drained
1 zucchini, chopped uglily
1 summer squash, chopped uglily

Cover the bottom of a large pot in olive oil and heat. Add garlic & onion and cook for a few minutes. I work from the top down, chopping as I go, and pausing to let it cook for a while after all the peppers are in and then again after the kidney beans are in. I work very slowly and then let it sit for a while once everything is in. The result is beauty (on the palate, anyway). Behold:

UGLY! But so mmm...

Hot peppers are another IC no-no, but I've actually felt incrementally better this week after all that Thanksgiving wine -- and the soy I shouldn't have eaten on Sunday. That was the worst flare I've had in a long time, all afternoon and into the night. I think I've finally proven to myself that avoiding soy isn't completely pointless voodoo! There might actually be a reason! Woo!

Tuesday, November 18, 2008

Parallel Lives: The Case for Illness

Sometimes I pause and think about what living with chronic coochie pain has taught me. But I know that I owe some of these present-day lessons -- the fact that I can learn them at all -- to having gone through the same thing with another invisible illness.

I have had bipolar disorder maybe my whole life. I know from dealing with it for so many years that despite the trials, I am better for having gone through it. I am a better person than I would've been otherwise, inside and out, and I wouldn't give it back if I could.

If I had been born without bipolar disorder, I would have had an easier time in college academically. If I had had an easier time, I would have, say, gone off to grad school immediately to study what I studied as an undergrad. I would have gotten a Ph.D. because becoming a professor would have seemed like the least of all possible evils, despite my obscene, undying hatred of academia. I would have set off on a rigid, narrow course through life, focusing on one specific subject when I have too many interests to number and can't, now, knowing myself, bear the thought of starving out all my other passions to serve a singular pursuit.

If I had had an easier time socially in my teens and early twenties, if I hadn't wanted to spend most of that time curled up in a deep dark hole, I wouldn't now understand the depths that people trudge through every day, often unbeknown to those around them. I wouldn't have learned that anyone and everyone everywhere has a reason why he is the way he is, and that he deserves the benefit of the doubt and the best of my empathy.

If I had been born without bipolar disorder, I wouldn't have spent all this time fighting to gain control of myself and learning how to live better. If life had been easier, there would have been no reason to raise all the questions I've raised, to make all the repairs, to change course a thousand times. I wouldn't have had to teach myself to live slowly, to go at my own pace, to ignore what others do and just do my own thing. I wouldn't have learned that delighting in my stupid cat as she plays with her stupid rubberband is the most important thing I can do on any given day.

And two years into vulvodynia, I can say that getting this disease was like striking gold. Yes, I am in pain all the time. Yes, I have no idea if I will ever be pain-free again. Yes, I can't have sex. Yes, I can't eat gluten or corn or sugar and on and on and on. Yes, yes, yes. And yes, sometimes I think I might go insane. But I know all the time that this experience has been, in a twisted way, one of the most rewarding of my life.

Because these past two years have really put my muscle to the test. What can I weather? What can I ignore? How strong is my self-discipline? How much hope can I have? Does it keep coming back setback after setback, day after day, the pain plain and sure as the rising sun?

Well, it does.

As I'm starting to put all the lessons together, those of both illnesses, I'm starting to learn what the best way is to live, for me. I'm learning how to keep myself on an even keel. I'm learning what I really want and what I really need. I'm learning to make sure I get it. I'm learning to get out of my own way.

If there is a case in favor of illness, this is it. I am so much better having trammels along the way. And certainly I will wake up pain-free tomorrow, or one of those tomorrows to come.

Thursday, November 13, 2008

VeganMoFo: What I've Been Eating

So I've been vegan for about 10 days now, maybe (don't remember when the last Reese's cup from Halloween went down), and the change has been really easy. But I guess I didn't really expect it to be hard given that I already have so much practice cutting things out of my diet.

I've had occasional non-vegan cravings, like the following:
  • See a play in which characters are eating scrambled eggs. Mmm, eggs... (one of my favorite foods)
  • Read randomly about wedding costs, wonder if bratwurst and kraut would be an acceptable meal. Mmm, bratwurst...
  • Tacos. Mmm, tacos...
But none of the cravings have approached being demands, and I'm so happy with peanut butter on a rice cake.

I haven't really eaten anything very exciting since going vegan, but it's been fun anyway. I've had Roman rice & beans (kidney beans, onions, carrots, celery, tomatoes, parsley, etc.), cauliflower soup (which should be called gruel and smells like grandma's kitchen), homemade hummus (my scrambled-egg replacement) with veggies, lots of green smoothies (currently 2 bananas plus a big grab of baby spinach in the blender), pear salad (pears, apples, spiced pecans, lettuce, at a restaurant -- delicious), and all that other stuff around the edges, the snacky things.

I think I've made Roman rice & beans twice in two weeks, which is kind of pathetic as it feeds me for like four days. But next I'm switching it up to quinoa, black-eyed peas, and veggies...a camouflaged rice & beans.

Within a few days of that last peanut-butter cup, I began peeing much more beautifully. I remember the first time it happened: it was after that pear salad, and it involved hardly any additional pain at all! That's how it used to feel on my "simple diet," and I was so frickin happy to see it return.

That lasted for a few days, but it took a down turn at some point and now it hurts again. I've had several interstitial cystitis no-nos that may have set it off: orange juice, wine, beer, vodka (shhhhh), and multivitamins.

I started the multivitamins because vegans can't get any B12 as it only comes from animal sources. So today I bought B12 alone in hopes that if there is any vitamin corrosion going on down there, it'll be lighter with only the one supplement. Plus I've read that at the supplement's dosage level, I can take it once a week and be okay.

I bought the wine, beer, and -- well, I had the vodka already -- because...yeah. I think I have to dump those for a while to see if they're affecting me. But I still have two-thirds of a six pack to get through! Aw, shucks.

I've spent some time on the World's Healthiest Foods website reading about nutrition. Their Food Advisor is really helpful -- you can plug in what you regularly eat and see where you might be nutritionally deficient.

I played around with it a while and figured out how I should be eating in order to get as much of the good stuff as I can. It's possible to get everything on a vegan diet, even on a raw diet -- except B12 and vitamin D. D we make from the sun, of course, at least during brighter months, so it's really only B12 that's impossible.

According to the Food Advisor, fruits are almost negligible compared to vegetables nutrition-wise, and seeds are really important too. I wrote out the most important foods on a piece of paper to take to the grocery store so I'd focus on them instead of on my standards. I just hope those guys did their research right :P

Anyway, sorry for the ramble. Must be that one-third of a six pack doing its work. I tell you, these days, when I drink beer, it's a celebration of the fact that I CAN drink beer -- that there's gluten-free beer out there for me to buy and drink. Mmm, beer...

Tuesday, November 4, 2008

You're Screwed: I Can't Screw

I went to a Halloween party this past weekend and came back with two phone numbers. Now, I'm lucky that my crotch doesn't precede me mentally in everything I do. I can start, at least, having a conversation with a guy without a giant va-jay-jay rising before my eyes. But eventually, the thought pops into my head: "You're screwed, buddy. By which I mean not screwed."

Because that's the end goal, isn't it, whenever people talk in that setting? Night, drinks, darkness? If not within the coming hours, then later, after a few dates. Eventually.

Except in my case eventually is an indefinitely long time from now. And no one can tell from just looking at me.

Maybe I'll start wearing a chastity belt to weed out the meat hunters. Outside my clothes, of course.

(Dammit, dammit, Halloween costume! Instead I was a unicorn. Dammit.)

Both guys asked me out on a date rather than making some more ambiguous advance. I told both I would go out with them because I'm trying to, like, be open to that, or something. I figure the more people I know the more likely I'll find someone I want to be with for more than one night in a past, pain-free body.

But I'm not really excited. I find dating frivolous. I know relationships have to start somewhere, but I usually get a quick idea of whether I want to spend a lot of time on someone, and after I'm sure I don't, I find no point in pursuing anything further. I like being alone more than I like being with someone who's okay.

I'm mentally at both extremes: give me really-like-him or give me sex. Except now I can't do the latter, and, on top of finding someone in general, the former has the Giant Va-jay-jay Hurdle -- i.e., who wants to date a girl who can't screw?

Yeah, yeah, reassurances, shmeassurances. I know there are guys out there who would understand. I also know that when a guy hits on me in the darkness of the night, it's not to talk about existentialism as presented in The Stranger. But if it smooths the transaction, sure, Camus all night long.

Thursday, October 30, 2008

Feed Your Crotch Right

What I eat directly affects how my crotch feels, I claim. Not only that, but if I eat gluten or corn, I get body pains as well.

When I told that to a psychiatrist last winter, he suggested that maybe food had nothing to do with my pain. He said that the increased body and crotch pain I had during the three weeks I spent eating gluten for a celiac trial might have been an unrelated fibromyalgia flare, or maybe a subtle flu.

I dumped him, but that's beside the point.

The point is that yes, it's hard to believe that a food intolerance would manifest itself in the crotch. But there's growing evidence -- even if anecdotal -- that diet can have an impact on pain conditions, including arthritis, interstitial cystitis, and -- yes, doctor -- fibromyalgia.

Living inside it, it's hard to be sure exactly what's going on with my body all the time. For instance, over the past few weeks I've had increased bladder pain and urgency. What's causing that? Is it the black tea I've been drinking or is it just my bladder acting up? I can't be sure, but I switched out my black tea for spearmint and it seems a little better.

Part of why obeying a self-devised crotch-pain diet is so frustrating is that there is no external, medical corroboration of my observations -- that I can't be sure whether it's doing any good or it's all in my head. I claim that when I first went off gluten the pain dropped considerably, and maybe that's real. But did eliminating sugar really help me pee better, or did I imagine it based on the improvement I saw from eliminating gluten?

Looking ahead, I'm trying to get back to my diet of no gluten, corn, soy, dairy, or sugar, because that's how I was eating when I felt best in the past. The past few days I've taken huge steps back that way, and I'm feeling mentally comfortable with it again. I'm interested in seeing whether I have the same results.

One thing that's helped me return mentally to the diet is reading about raw foodism. The raw food diet seems like a crock to me -- specifically, I'm not convinced it would make you feel any better than a low-grain vegan diet -- but I can't stop reading about it! People who follow it report huge benefits to their energy and health. And I ask, how about it, Ms. Peach?

So I'm going to give it a go, but not yet. I need to adjust to a vegan diet first: while I don't eat dairy, I still eat meat and eggs, and I need to get used to fueling myself without them. Then, if I'm still feeling into it, I'll do a raw trial that's long enough to get through the "detox period" (which I suspect is mere adjustment, similar to the withdrawal I felt going off gluten and sugar) and see the benefits of the diet, if they exist.

Yeah, I'm crazy, but to me it sounds like fun. Historically, my self-discipline with diet change is really strong, and I know that after I adjust to a diet the old stuff becomes less tempting. In fact, today I'm craving hummus and raisins like crazy, and I look forward to tomorrow's rice and beans!

Oh, and timing is everything: November is Vegan Month of Food, or VeganMoFo. I think you're supposed to blog about the food you eat, and though I probably won't do that much, it'll be great to go vegan with all that camaraderie.

But -- I reserve the right to eat turkey and stuffing :)

Saturday, October 25, 2008

The Cooking Burden

I see myself slowly recovering from the spate of risky-food indulgence that came on mostly (it seems) in response to the visit with the vulvodynia specialist. Ah, psychology. Go work that one out.

I haven't had a white mocha in days. In fact, I can't remember the last time I had cane sugar. Cane juice, maybe, in the form of Peanut Butter & Co.'s ridiculous Dark Chocolate Peanut Butter. Don't buy it. Just don't. There's no point. It's gone in minutes.

I'm not feeling particularly deprived or angry or frustrated about my food intolerances anymore, and I'm pretty happy with what I've been eating. But then I think about what I've been eating -- salami & kale on rice-almond bread -- and I remember that I have a few more steps to go before I'm back to legitimate healthy eating.

(Salami & kale are a GREAT pair. Also, any meal plan that includes salami automatically pleases me.)

So I have to return to my old cooking ways, ways that involve more than toasting bread and choosing how many slices of salami to eat while the bread toasts. The problem is, of all creative forms, or crafts, or whatever, cooking is the least appealing to me. I browse all these awesome food-allergy blogs and wish I were one of those people who love to be in the kitchen, but I'm just not.

But I try. Tonight I made gluten- and dairy-free (and therefore vegan) mac & cheese, recipe by Karina, the gluten-free goddess.

That's part of the mac & cheese before it headed into the oven. Wow, it is really good! The sauce was so tasty good that I scraped it out of the pot after I poured it out, just like it was real cheese sauce.

After the oven.

The good thing about cooking like this is that since I live alone, I just made food for three or four days. The bad thing about it is that it's time-consuming, and it seems even more so when it's not your hobby of choice.

Luckily, I accompany my lack of interest in cooking with easy-to-please taste. I really am happy eating steamed zucchini and tilapia or meals of equivalent investment most of the time. But add it all together -- the constant cooking plus the gluten/other substitution -- and it starts to feel like a pretty big pain in the ass.

Keep on keepin' on. Yes, I did use va-jay-jay pasta.

Tuesday, October 21, 2008

Va-jay-jays, Va-jay-jays Everywhere

When you spend so much time thinking about a certain part of your body, that body part starts appearing...everywhere.

For instance, I've been on a postcard kick lately and so went to the post office to get a book of postcard stamps. The stamps are tropical fruits sliced open and...well, see the picture for the rest of my thoughts.

So far I've used three stamps: one starfruit, one pomegranate, and with the last postcard I forced myself to use a kiwi. The papaya and the guava might be around until the next rate hike because I simply don't feel comfortable sending my postcards out with coochie tattoos.

And then there's shellfish, particularly mussels. I mean, come on! Can anyone eat them without thinking va-jay-jay?!

Sliced tomatoes, shell pasta, peapods, O Magazine. There was graffiti down the street that I could've sworn read "VAGY." I can't say "lips" without internally smirking. I'm becoming a specialized form of Beavis and Butthead -- or maybe a more advanced version as they stuck to wood and boobs and my observations would (huh huh) probably make them blush.

Sometimes I think about making a vulvodynia emblem that could go on blogs and Facebook profiles, but everything I come up with contains a hidden vag. My life is nonstop Where's Vagy? It's like the divine spirit of the universe: once you open your eyes to it, the va-jay-jay is everywhere.

Thursday, October 16, 2008

Crotch Counseling

I've seen a therapist on and off for the past eight years or so for regular mental-health stuff, but this week I had the first session devoted entirely to my crotch.

First of all: my therapist is good. I've had...apparently too many therapists to count, maybe around ten. This therapist is the youngest I've had and also possibly the best. If your therapist sucks, don't give up! There are good ones out there!

At my appointment this week, my therapist hooked onto the vulvodynia issue and didn't let me stray from it. We talked about treatment options and how I feel about them, about the diet and its restrictions, about empathy and feeling isolated, about chronic pain in general. I had been expecting to talk about other things, but it was really good to have an hour-long conversation with someone about what is really the central issue in my life. It was...therapeutic, one might say.

While the whole conversation was worthwhile, what's stayed on the surface of my mind is our discussion about support and empathy. I told her how I recently had a panic attack over the pain that branched into panic over feeling like no one really hears me or gets what I'm going through -- that very, very few people appear to understand the impact that this condition has on my daily life.

We discussed how chronic pain is difficult in general because it's invisible, and I had images of people painting themselves wherever they feel pain in order to communicate their condition to others without having to say anything. Unfortunately, with vulvodynia, any paint job is going to look like a pantyliner accident. (In case you're wondering, yes, synesthetically, my crotch pain is largely red.)

We talked about how I feel isolated when my family gets together because my dad and my uncle get to talk about their back pain -- get asked about their back pain -- but I can't say anything about my pain without sounding vulgar. Indeed, anyone who knows about my pain in my extended family knows through my mother, and I think that amounts to two aunts.

We talked about how crappy people are at supporting others (crappy being my evaluation). She asked me what I'd want to hear from others, and it's ridiculously simple: "I'm so sorry." How hard is that? It's the first thing out of my mouth when others share their problems -- and half the time people respond with "It's not your fault." Since when does "sorry" only assume guilt? Maybe "I'm so sorry" has slipped out of our emotional lexicon and I'm old-fashioned, giving and expecting an erstwhile phrase.

We delved into my abhorring those who garner sympathy from a dozen different people every time they stub a toe. She, in that good ole therapist way, reminded me of the continuum: I don't have to become one of those people in order to share my experience and receive support from others. She suggested that while I don't have to mention it every time I see or speak with someone, I should feel free to bring it up more often with those close to me because otherwise most people forget or assume that since I'm not complaining or outwardly ailing, everything is okay.

It's hard with a condition like vulvodynia to feel like your problems are worth someone else's time. Yes, it has changed my life and it's with me every second of the day -- but it's not terminal, it's not death of a loved one, it doesn't disable me from leading a mostly normal life. How can I even complain? There are so many others out there who suffer worse!

Obviously this is faulty thinking. It's not like focusing on my problems diminishes the concern I have for someone else's. It's not like it diminishes the total overall support or well-being that exists in the universe -- as if there's a central pool of it that we all draw from and I should leave my store there for those who need it more.

In fact, the only way for me to be closer to happy and healthy is to process my problems as much as I need to and -- if at all possible -- involve others in the processing in order to have support.

I need to remind myself of one other thing: I wrote "complain" above, and then I realized that I hardly ever complain. Complaining sounds like "This is unfair!" "It really hurts!" "Why me?!" Instead, I sound like "Maybe if I eliminate orange juice..." So, yeah. I'm a little freaked out that I rarely complain, like it might mean I'm an alien or a reptile or something. Maybe I need to complain more.

VULVODYNIA SUCKS!!!!!!!!!!!!!!!!!

Monday, October 13, 2008

Exercising Those Abs

I've started using free weights at home, and I'm getting addicted. I scoff at most exercise, but lifting weights I like. And I like the fact that having free weights at home means I can use them whenever I want and not have to schedule time and effort to go to a gym. I'm not a gym kind of person. I'm not a schedule kind of person.

But while my arms are getting all hard and buff, the rest of me is languishing in untonedness. My specific area of concern is my belly. I'm skinny, so there's nothing there to lose, but I like feeling how hard my biceps are getting, and I want to be able to feel my hard abs too.

The only problem is that ab exercises seem like just about the worst idea for me right now. If coughing and laughing hurt my coochie, a few dozen crunches sounds like a really big NO WAY. There are even some dumbbell exercises I don't do because of the pain they give me down there.

So how does one tone one's abs without igniting one's netherly pyre? Pelvic Pain Matters posted about this question just the other day. That blog's owner had a physical therapist comment on how regular ab exercises are really bad for someone with pelvic floor dysfunction (malfunctioning (often overly tense) pelvic-floor muscles). I don't know if I have PFD or if it's just all the northern stuff pushing south when I cough/laugh/crunch, but her advice seems like a good starting place: don't exercise abdominal muscles in isolation, and don't do anything that pushes the abdomen forward and the pelvic floor downward.

The physical therapist lists safe abdominal exercises in that post, but I, being not interested in exercise, don't know what they are. I tried Googling them, but they seem to require equipment and/or tapes. I, being not interested in exercise and also thrifty, am not going to go buy exercise equipment or tapes. I just want something quick and easy to remember that I can do with my body alone. Like crunches, but not crunches.

So I searched the web and found nothing. Then I found pregnancy abdominal exercises. Then I thought -- again; time number 10,524 -- if I got pregnant, would my pain go away? Then I gave up on the abdominal-exercise search. I think I'll just try a few ideas and see which ones hurt the least. May my inner Jane Fonda guide me to an ab-toning solution.

Thursday, October 9, 2008

Bladder Pain & Diet

I recently came across a press release from Northwestern University -- via this really cool automated science search engine, e! Science News -- about research that suggests that the pain of interstitial cystitis (painful bladder syndrome) could be due to an irritated colon.

The way the press release is phrased, it sounds like the researchers concluded that ALL pain associated with interstitial cystitis comes from the colon. I don't know how that can be true if, under close examination, the IC bladder often reveals that it has open wounds in its wall. It seems like in many cases for at least part of the pain, the bladder itself must be involved.

Anyway, I've been wondering for a while if some of my pain couldn't be directly related to how happy my gut is --not only how gluten-free I'm eating, but how at ease things are down there. It's one of those things I wouldn't consider if I didn't live inside my body doing that unwritten chart we all do over time of our lives versus our pain.

The times when I've felt best down netherly -- my two biggies being very low moment-to-moment pain and easy peeing with pain only at the beginning -- are the times when I've stuck to a diet that averaged out to the following: eggs and red-potato hash browns, fish and steamed zucchini, an extra fruit or veggie or two, peanut butter (perhaps melted with some pure maple syrup), orange juice. Maybe it changed around a little bit, but that was the core "idea" of the diet (though "idea" makes it sound intentional when really it was the result of elimination and not wanting to cook much).

So now that I've read about NU's study, I really have to wonder if that diet didn't make me feel so much better because it was easy on my gut. It doesn't include a lot of fiber (I'd need some rice or beans), but it looks pretty gut-soothing overall. I used salt and black pepper but no other spices. Lemon on the fish.

I also have to wonder if the IC diet doesn't help people not because it doesn't harm their bladders, but because it soothes their colons. I mean, no coffee, soda, spices -- wouldn't we all feel better? So I'm thinking maybe I should follow the IC diet for a while -- or at least a little of it -- to see if I notice a change. As I said before, I'm still not sure where the IC/vulvodynia line falls, at least in my body, and maybe my bladder needs some help.

The IC diet includes a list of forbidden foods on which is my favorite food in the whole world: orange juice. I'm doubtful that giving up my OJ will make my pain improve, but I guess I'll try. After this jug is through, I'll switch to juicing pears for a while (not a bad alternative).

The next hardest thing for me to eliminate will be spices. Oh man, I love spicy things. Is black pepper a spicy thing? Because it's my second favorite food, and without it I resort to peanut butter for love. Which, though I don't see it, is probably another IC no-no.

So, yeah, on to the land of simplicity. I'll call it that instead of denial. My parents are out of town; when they get back, I'm going to ask my dad to help me find OTHER THINGS to eat so I don't fall asleep at my plate. (Though confession: I could eat eggs & potatoes every, every, every day and not care.)

Tuesday, October 7, 2008

The Low-Oxalate Diet: Myth?

The Low-Oxalate Diet is a common suggestion for treating vulvodynia. Oxalates occur naturally in foods, and the theory goes that when oxalates leave the body in the urine, they irritate the vulvar skin.

Following a low-oxalate diet involves cutting out those foods with medium and high oxalate content and focusing on foods on the low end. Women might also take calcium citrate with food as it binds to the oxalates and helps them leave the body (the calcium citrate must not have Vitamin D as it inhibits the oxalate-binding process).

When I visited the vulvodynia specialist in August, he affirmed my suspicion that a low-oxalate diet probably isn't a worthwhile pursuit for someone with vulvodynia. Here's my reasoning:
  1. The original study linking oxalates to vulvodynia involved one woman. Initially this woman had abnormally high oxalate levels. After three months of following a low-oxalate diet and taking calcium citrate, she saw a reduction in her vulvar pain. After a year, she was pain-free, and she'd see a flare if she missed her calcium citrate. But again, that was one woman.
  2. A follow-up study involved 130 women with vulvar pain and 23 without. Of the women with vulvar pain, only 59 had elevated oxalate levels in their urine. These women followed low-oxalate diets and calcium citrate routines for three months, after which only 14 saw an improvement in their pain and only 6 were able to have pain-free sex. In other words, the data didn't favor a vulvodynia-oxalate causal link, though it indicated that some women's symptoms might improve with the diet.
  3. Oxalate charts (PDF) are inconsistent. For instance, the first two charts I linked to rate zucchini as low in oxalates, and the third chart says it's high in oxalates. I'm not sure how these sources get their data, but I read somewhere (that I can't find now) that while foods have oxalate patterns, actual oxalate content varies according to how the food was grown. So eating a low-oxalate diet that respects every published chart leaves you with very few foods to eat!
There are two more reasons I'm wary of the low-oxalate diet: one, I'm already on a pretty restrictive diet that eliminates foods I KNOW aren't good for me; eliminating high- and medium-oxalate foods leaves me with a diet that's not very healthy or attractive. Two, I actually did try a low-oxalate diet for a short time (a couple weeks) and took calcium citrate regularly for a while longer (at least a couple months), and I didn't see a change.

It could be that I didn't follow the diet or take the calcium citrate long enough, but my skepticism about the diet makes me unwilling to try it again. If anyone has seen results from the diet or the calcium, please let me know!

Monday, October 6, 2008

I Am So Angry Today!

  • I don't know what the hell NIH's Vulvodynia Awareness Campaign is going to do for vulvodynia. They're offering a career reward for doctors who study it; hey. Other than that, how are they actually raising awareness? I am too angry to read things thoroughly right now, but I don't see any plan on their page that is actually going to make people (doctors) more aware. What, are they all going to magically land on the webpage and individually ask for the information packet?! Are they all going to tune in for the press conference? I don't get it. If NIH were Pfizer, Viagra would be a typo!
  • I am so tired of my diet. I hate eating in the first place; it's always been a hassle. But now having to commit all this thought and effort to it? And to eat so carefully and still get glutened anyway? And to eat so carefully and still be in pain? And to have the food affect not just my crotch, but my body and my mood? To have it throw me off of my game entirely? I am exhausted. I've got no one in this with me. I live alone and I know no one facing the same challenges. Which brings me to...
  • People absolutely suck at providing empathy and support for others. I have no tolerance for it anymore. I can't count how many times I've felt ignored or forgotten because people didn't ask about it or changed the subject or talked about other, competing things (sex, Diva Cups, etc.) without remembering what I'm going through. And yes, I don't expect people to be asking about it all the time! I would hate that! But I also can't ask for sympathy all the time, and wow, wouldn't it be nice if I didn't have to? What a novel thought.
  • My crotch hurts. It still hurts. I don't know when or if it will stop hurting. I feel trapped inside my body. It's driving me crazy. The thought of having this pain for the rest of my life makes me wonder what living is. I feel like I spend 24 hours a day working around it, like everything I do I do with a 100 pound weight strapped to my chest.
Quinn over at Life with Vulvodynia suggested in a recent blog post that we make a list of what distracts us from our pain. Seeing as I'm feeling desperate and crazy right now, I'm going to focus on mine. These are the things I posted in response:
  • doing music (listening to it is too frustrating; doing it requires me to focus outside my body)
  • hiking and taking photographs (not going to happen today)
  • playing The Sims 2 (my butt hurts too much for much of this one; maybe I'll try a different chair)
  • dancing (not feelin' it)
  • cleaning (not up to it)
All of those seem pretty overwhelming. All I want to do is sleep, but I'm too agitated. Oprah's on in an hour. Maybe she'll distract me.

Sunday, October 5, 2008

Intimate History: A Vulvodynia Tour

I'm writing this post to record in detail my experience with vulvodynia. When I was new to vulvodynia and doing all the research I could stomach, personal accounts provided the most informative and comforting reading. So I hope that a post like this might help someone else figure out what's going on with her body and make her feel a little less alone.

In other words, this post will be long and boring except to the person I intend it for.

Because when the pain first started I thought it was a UTI, I associated it mostly with urination and the fullness of my bladder. It hurt to go pee, from start to finish, as opposed to my usual UTIs which involve pinching only at the end of urination. I didn't have the usual UTI urgency either -- just more and more pain as my bladder got fuller. It also hurt to put pressure on my bladder in any way: bending, squatting, leaning, jumping, coughing, etc. I drank a huge amount of water the first couple weeks I had the pain but it just made everything worse, including giving me a half-hour or hour of ringing pain in my crotch every time I went pee.

After the initial course of UTI antibiotics didn't work, I went to urgent care. The doctor gave me antibiotics for Chlamydia (immediately after taking a culture, which came back negative, of course). I pressed him on my specific symptoms, and he said it was possible that I had interstitial cystitis, a chronic pain condition involving the bladder.

I'm still unclear on where the line falls between interstitial cystitis (IC) and vulvodynia. My vulvodynia has always included pain during urination -- I have not peed once in the past two years without some level of pain. I also feel increased pain as my bladder fills, but I don't have an urgent need to urinate like I do when I have a UTI. IC descriptions include urgency as a primary symptom. I do end up voiding more times a day than I would otherwise simply because it reduces the pain level, but I also void less than I would if I didn't have increased pain with urination. In other words, I'm completely in control of when I pee, which is a different feeling from the UTIs I've had. UTIs make you plow through people to get to the bathroom; this condition leaves me the choice of when to go.

I think both the urination pain and the bladder-pressure pain could be due to vulvodynia. With vulvodynia, the nerves down there are hypersensitive, presumably also those in or at least around the urethra. A full bladder presses down on everything else and triggers those nerves. The thing is, even to this day, it only takes a couple tablespoons to start up the bladder-pressure pain, and it's an awful choice between voiding my bladder to get a short time without that pain and holding it in to avoid the urination pain.

In other words, OMIGOD DO I HATE PEEING.

When the urgent care doctor suggested IC, I did have one symptom that seemed to match: pain in my clitoris. From what I understand, the bladder is right above the clit, which puts the clit in a prime location to be a resonator for what's going on in the bladder. Sometimes my clit would hurt by itself, sometimes only upon touch. I couldn't wash down there without hurting it, and clothing would set it off too.

Not surprisingly, I completely stopped masturbating. If I mustered any sexual desire at all and then managed to act on it, I'd be paying for it the next day. My clit would hurt, my vag would hurt, and the whole thing would burn like I was being punished for something sinful. And, of course, it wasn't even worth it -- orgasms hurt too. I became sexually dormant, the complete opposite of how I had been before. I didn't even have a mental interest in sex, let alone desire anywhere else in my body.

As time went by, the burning crept in: the whole area inside my inner labia from my perineum to my clit would burn like it was under acid during large swaths of the day. It didn't matter if I was wearing clothes or not, sitting or standing or lying down -- it just burned. Sometimes the burning woke me up; sometimes it kept me from falling asleep. It raged on top of the bladder-pressure pain and the urination pain, its own separate issue. It would fade away for no good reason and then come back a few hours later.

After the guy I was seeing dumped me, I attempted a few times during those first eight months or so with vulvodynia to at least make out with someone. The first time, the pressure of his body on mine -- fully clothed -- was too much for me to handle. I shut down, but of course I didn't know what to say to him. I didn't like him anyway, so off he went.

I had a fling with someone the following April, and the same thing happened: I couldn't even stand to have him pressed up against me in any way. No big deal; didn't like him either.

During this time, I went on three different antibiotics for UTIs. Then I saw a doctor who thought it was yeast, so I did the oral pill and the cream, but that just irritated things more. I tried different cream; no go. I tried boric acid suppositories, which didn't do anything either. Then I saw someone who thought it was bacterial vaginosis. Onto another antibiotic, but of course it didn't help. When I went back to see her, she said she saw nothing under the microscope and suggested I bathe in oatmeal or baking soda.

I gave up for a while. Then I saw my mom's gynecologist who immediately told me it was probably vulvodynia. She cultured me for everything under the sun, which involved swabbing my urethra -- felt like I was birthing demons. About the same time, I eliminated gluten from my diet and started feeling better. I told my gynie I would hold off on treatment for the vulvodynia until I had more time to spend with the diet.

Here's what going gluten-free did for me: within two days, the cyclic burning had all but subsided. I still had residual pain and the urethra/bladder pain, but I was no longer inside a raging fire for most of the day. Later, as I stuck to the diet, the clit pain lessened, at times becoming a non-issue. I also started peeing better, especially after I eliminated refined sugar. I didn't have as much pain when I moved and things like farting and coughing became less dreadful.

About a month after I went gluten-free, I tried having sex for the first time since the pain started. I couldn't even have dreamt of having sex before I stopped eating gluten. I didn't have too much pain from being pressed against someone down there, but I had a huge amount of searing pain upon entry. I had to ask him to stop and sit there a minute while I adjusted. No, I don't know what "adjusted" means here -- but once we got going, the pain was minimal.

Of course, the whole next day I was in agony. It was as if there was still a penis inside me, a razor-lined penis.

I tried having sex again last December, this time with someone new, and it was basically the same: I had to ask him to stop upon entry because the pain knocked the wind out of me. The next day wasn't unbearable, but I developed a UTI that I couldn't get rid of with water and cranberry juice. I went on antibiotics and experienced the worst pain I've ever felt in my life. I was in utter agony, spending the worst parts sitting on the toilet crying. Being on the toilet without anything touching me down there was the only way I could feel better. Nothing worked for the pain, either, so I just sat and waited for it to pass. It was the kind of pain that wouldn't let you NOT cry, not because it smarted or stung, but because it was so unbelievably painful.

I went to work at my serving job with that pain and spent too much time crying in the bathroom and blinking tears away as I walked to my tables. The next day I called off, like I should've in the first place. I had gone in because the antibiotic pain was cyclical, just like the gluten pain, and I wasn't in pain when I left for work. I, eternal optimist, thought that if the pain hit the Aleve I'd thrown in my bag would do the trick even though it hadn't before. I really don't know how I survived that shift!

After I finally finished the antibiotics, things seemed to be going well, but the diet change never proved to be a cure. I went back on gluten for three weeks last February to get a Celiac test, and the burning returned. It took me a while to recover from eating the gluten, but improving my diet brought the same results once again.

Over the summer, though, the continued pain wore me down. I asked my gynie for something for it, and she gave me Lidocaine, which worked once and then stopped. A few weeks later, I found myself crying to her at my pap appointment. That's when she referred me to the specialist. She reassured me that treatment can reduce the pain and said that the doctor she was referring me to could help me out better than she could.

The specialist, as I said in an earlier post, turned out to be a partial bust -- in that he didn't tell me much that I didn't already know. I still have to find a psychiatrist so I can try the oral meds for the pain. The only other medication option he endorsed (besides Botox) was Lidocaine for 6-8 weeks, which, as I also mentioned before, makes my skin wrinkled and irritated.

These days, my pain seems dependent on what I eat. If I eat crap -- corn, sugar, something that I'm not sure is gluten-free -- I'll feel like crap. The acid burn will start again, I'll have a harder time peeing and be in worse pain while I do, and my body will feel bad in general. If I manage a good diet for some days in a row, I'll start to pee better and with less pain and the burning will lessen or, at times, disappear.

The best I've felt since my vulvodynia started is as follows: peeing only hurts upon starting; peeing approaches racehorse-ish; there is no acid burn; there is some residual low-level pain; I don't hurt when I'm walking/leaning/driving my car, and coughing/laughing/farting hurt very little. I can dance without choosing moves based on how they affect my crotch, and I can press myself up against a makeout buddy without thinking about the pain. But as I said in an earlier post, my eat-right will is depleted right now, so I'm currently somewhere in between.

Oh, and I've had a handful of pain-free orgasms (meaning no added pain from the orgasm) since the diet change. Hallelujah.

I refuse now and indefinitely to have vaginal sex. Not only is it totally ridiculous to ask someone with vulvar pain to have intercourse, but for me, the risk of getting a UTI is too great. I can't stand the thought of going through another course of antibiotics. I would absolutely have to take knock-me-out painkillers along with it.

I read a lot of accounts of vulvodynia being largely about pain upon contact, so I want to make clear that my pain has never been contact-dependent. Though contact can affect it, it mostly has its own ideas. Going gluten-free, it's a lot less sensitive to contact and movement than it used to be, which makes things like riding a bike seem feasible again.

Edit: I just read at's (imperfectly edited) medical dictionary that vulvodynia that is not contact-dependent is called dysesthetic vulvodynia:
DYSESTHETIC VULVODYNIA. Women with dysesthetic vulvodynia have constant burning throughout the genitalia or in different areas at different times. Symptoms do not necessarily occur in response to touch or pressure on the vulva, although activities such as sexual intercourse or bicycle riding may increase the discomfort.
Yeah. That's what I'm trying to say. That's opposed to vulvar vestibulitis (also vestibulodynia):
VULVAR VESTIBULITIS. VVS symptoms are confined to the vestibule and vary from mild to severe. VVS often begins suddenly, following an infection or trauma. Painful sexual intercourse may be the first symptom. The intense itching and painful burning can turn into chronic pain. Symptoms may occur daily or only with sexual intercourse.
VVS is what most accounts I've read sound like, so I'm glad to see that I'm not crazy in thinking they didn't match my symptoms! However, most of my pain nowadays is contained to my vestibule, which is why the specialist said I would probably be a surgery candidate. I also definitely respond to the cotton swab test (= razor), so maybe I have some aspects of both.

Saturday, October 4, 2008

How Not to Write a Survey

Shortly after I saw the vulvodynia specialist in August, I received a survey for a study directed at vulvodynia patients. I thought, oh goodie! Someone is trying to figure us out!

I was wrong. Well, technically I was right: someone is trying to figure us out, but whether they're trying to figure out what causes our pain remains unclear.

After perfunctory questions about past treatments and levels of pain, the survey turns out to be mostly about how my pain makes me feel. What's more, the questions are emotionally difficult to answer:
  • Have you felt less physically or sexually attractive as a result of your vulvar or vaginal symptoms?
  • Have you felt less feminine as a result of your vulvar or vaginal symptoms?
  • How do your vulvar or vaginal symptoms affect your level of stress?
  • How do your vulvar or vaginal symptoms affect your self-esteem?
  • Do symptoms or conditions related to your vulva or vagina cause you to experience feelings of embarrassment?
  • Over the past 3 months, how satisfied have you been with your overall sexual life?
  • Over the past 3 months, how often did you feel sexual desire or interest?
  • Since my vulvar and vaginal symptoms began, my feelings of closeness to my partner are?
There's also a set of questions that looks like a depression evaluation, and there are some asking about the extent to which vulvar pain has inhibited the patient physically.

Not surprisingly, I broke down a few times while filling out the survey and had to put it away. I haven't sent it off yet and I don't know why. I guess in the back of my head I want to return it with a letter: first of all, this survey was distressing; secondly, what's the point? As if you don't already know that vulvar pain affects women this way?


Maybe the survey is necessary for the hospital to get or allocate funding to study vulvodynia. Sure. Because the fact that it's chronic pain of unknown origin isn't enough. They have to be certain it affects people's lives, too.

Thursday, October 2, 2008

If My Penis Hurt...

Sometimes I think the exact same thing as the blogger in the sidebar: "If my penis hurt, there would be a pill!" As the blogger says in a post, there's no way that chronic penis pain would be relegated to mystery causes and treated with a shrug.

Is it true? Not sure. However, if we compare vulvodynia to the closest men's condition I can think of -- erectile dysfunction -- here's what we get:

ED: about 8,720,000 hits
VV: about 158,000 hits (1/55th of ED's)

ED: Viagra, Cialis, Levitra, at least
VV: none FDA-approved; crossover meds from other conditions

Rate of Occurrence
ED: increasing with age; Cialis says 50% or more of men 40-70 experience it
VV: 15% or more of women, any age

age, lifestyle choices (obesity, high blood pressure, smoking, alcohol or drug abuse), injury, hormones, medications, medical conditions like prostate problems and diabetes
VV: no one knows (but it sure ain't age or lifestyle choice)

ED: as long as a guy wants to have sex?
VV: all day every day, indefinitely

can't have sex
VV: can't have sex, wear certain clothes, walk or pee without pain, sit for long periods of time, ride a bike, etc., etc.

I'm getting snippy. I know it's obvious to all of us that chronic pain trumps a malfunctioning penis any day of the week. It's almost petty to make these points. But if it's so obvious, why the hell isn't there a pill?!

The usual answer: money. The more plausible answer: awareness plus money.

Money: 1 in 6 women will experience vulvodynia in her lifetime. That sounds like ka-ching to me.

Awareness: I visited at least 7 doctors before one mentioned vulvodynia, and that included a urologist, a gynecologist, and a midwife, people who should've been taught about a condition that 15% of their patients will have. The ignorance of the disease in the medical community is unbelievable. They can't advocate for better treatment if they don't know it exists -- this 1-in-6, roll-of-a-standard-die disease.

Money again: Vulvodynia doesn't lend itself to disease-mongering, as this article puts it, like erectile dysfunction does. Pfizer took a drug made for ED resulting from more serious medical conditions and marketed it as a confidence pill for an occasionally shy weewee. They were so successful at it that the text box I'm typing in knows I've spelled "Viagra" correctly. It doesn't recognize "vulvodynia."

Such success is impossible for a drug marketed toward vulvar pain. The revenue cap is at 15% of the female population. The way Pfizer sells it, every grown man is a potential Viagra customer.

Still, bipolar disorder affects around 1% of the population, and there are several FDA-approved meds for it. Assuming a vulvar-pain med drew the same percentage of sufferers a bipolar med drew, that's 7.5 times the customers (if half of those with bipolar disorder are men and children on bipolar meds are negligible). Money might not be a factor at all.

Back to the original question: if my penis hurt, would there be a pill? Would chronic penis pain overcome the awareness hurdle? I'm still not sure, but I think there might be an answer here: ten years after the FDA approved Viagra for erectile dysfunction, there is still no drug that addresses female sexual dysfunction.

P.S. Do you think this would appear in an article on erectile dysfunction? "At each stage of your life, you experience changes in sexual desire, arousal and satisfaction. Accepting these changes and exploring new aspects of your sexuality during times of transition contribute to positive sexual experiences" (source: CNN).

Edit: I did my analysis above assuming that all women with vulvodynia have it simultaneously. They do not. Vulvodynia can come and go, or it can last a lifetime. Bipolar disorder, once diagnosed, is around forever, and presumably those patients would be on medication from there on out. (I've gone on and off and am currently off, so it's not always true.) But my point still stands!

Wednesday, October 1, 2008

Happy Anniversary, Ms. Peach

Today is October 2, the date I call my Vulvodynia Anniversary. In truth, the dates ranging from September 30 to October 2 together make the anniversary. September 30, 2006, I had sex with someone new. By October 2, the pain had arrived in full.

The fact that it was someone new makes it seem like an STD, right? And after the UTI antibiotics didn't work, I started thinking that's what was going on. I saw a doctor who said I probably had Chlamydia. I told the guy I was seeing, and he said it was all but impossible -- he was recently divorced, hadn't been with anyone else since his wife, and was sure his wife hadn't cheated on him. Plus, we'd used condoms.

I've read since then that vulvodynia often has a trigger event -- that, for whatever reason, it comes on suddenly after some otherwise common event, be it sex or antibiotic use or a yeast infection. And as I said in an earlier post, while the really really bad awful OMG something is WRONG pain arrived on October 2, things had been feeling odd down there for at least a month. So even though I had a trigger event for my vulvodynia, it probably would've come along without one.

In honor of our 2nd anniversary, I'm going to make a list of things vulvodynia has taught me -- because wow, have I learned a lot. Pain aside, I am so much better and wiser for having been forced into this journey.

What vulvodynia has taught me (in part, no doubt):
  1. Dear lord, QUIT YOUR JOB! If it's driving you insane, quit! If it's making you stressed and depressed, quit! If the stress is exacerbating your health problems, quit! You will be okay. (This is not legal advice.)
  2. You WILL be okay if you quit your job. Or, rather, I was okay, and I'd be okay doing it again. I will never let myself fall flat on my face; I will take care of myself.
  3. If what you're doing makes you feel like you're constantly going uphill, you're going the wrong way. That's not to say that the right thing won't be challenging -- it will be, but it will also be like running downhill.
  4. People who can't empathize suck. People who don't show you any support whatsoever suck even harder. If it's worth staying friends with them, tell them they suck. If it's not, dump them. (Still perfecting this one...)
  5. I don't have time or patience for guys I'm not interested in, especially now that there's no major physical benefit to make up for how annoying they can be.
  6. Empathy is a skill, which means you can strengthen it. Vulvodynia has strengthened my empathy by giving me a new perspective and by enhancing my instinct about how to provide support for others.
  7. Pain and sickness are very lonely, and it can seem like no one hears you. Being heard is very powerful. I now try consciously to make others feel heard.
  8. Food is so freaking important. It is absolutely the number one component of health. I believe this so fiercely that I've begun wondering how multiple-Diet-Coke drinkers remain alive.
  9. just can't solve everything, no matter your optimism, determination, or ingenuity.
  10. I have unbeatable willpower when I believe in something.
  11. In order to live well, I have to listen to myself and respect what I hear. What I want and need are not stupid, but the various "shoulds" that run through my head might be.
  12. What works for someone else may not work for you, and that's okay. For instance, I'm not a bad person for rejecting vegetarianism or not loving yoga (for reasons beyond the pain). Sometimes we talk about such issues as if there's only one way to live when the reality is that our likes, dislikes, and beliefs don't come from cookie cutters.
  13. My inner child -- my lingering child -- is super-duper in touch with what I need and has better ideas than my adult self on how to address my problems.
  14. Personal growth is endless. There's never any kind of arrival. It just keeps going.
Sometimes I think that the journey's not over yet because I have lessons left to learn from vulvodynia. Then my atheist, non-determinist brain rephrases: the journey's not over yet, so milk it for all it's worth; keep yanking those lessons out of your experience, pounding them out with the meat mallet that is your mind.

Yeah. Meat mallet mind. I am an epiphany machine.

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 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. 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.