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.