Saturday, February 28, 2009

The Q-Tip Test, and a Theory

So I've mentioned that my pain has changed over the past couple weeks, and today I sat down and poked around in front of a mirror to see exactly what's up.

First let me say that earlier this week, as my period was ending, I went into my cold, cold bathroom to put in a cold, cold tampon, and as I slid the applicator in, all I felt was...cold.

I DID NOT FEEL ANY PAIN as I put the tampon in.  NO PAIN, just cold.  But I am cautious with my vulvodynia-related excitement, so it was mostly a "hmm!" moment.

About a week ago (which would've been during my period), my pain seemed to collapse itself around and in front of my urethra, sort of concentrated inside my body above my urethra and my clit.  The pain used to be in my vulva all the way up to my urethra, and my clit would participate sometimes, externally.  Internally, it would burn and sting mostly around my vulva with some bladder-area pain and hurt a hell of a lot when I peed.

The pain has stayed in the same urethra-clit space all week.  It's actually been pretty bad most of the time, but sometimes it fades to almost nothing.  It's different pain, too -- now it feels like omigod, if I don't pee, I'm going to permanently scar my bladder.  And you know what that means, in the absence of infection...interstitial cystitis.

Which is not a surprise.  Like I've said many times, I totally have those symptoms.  It just seems like this week they've become more pronounced.

I try not to pee too much because peeing is like coughing -- the more you cough, the more you cough.  With IC, the more you pee, the more you omigod have to pee.  But still, some moments it seriously feels like I'm doing damage to hold it in.

Anyway, back to the VULVA.  With all these new sensations down there and a relatively quiet vulva, I decided to save $400 and do the q-tip test myself.  For those not in the know, a vulvodynia specialist may diagnose vulvodynia by stabbing---I mean, by gently touching a patient's vulva with a q-tip.  It doesn't feel like a gentle touch if you have vulvodynia.  It feels like the corner of a razor.

So I spread 'em in front of a mirror and got my $0.00004 q-tip and poked around.  On the right side of my vulva south of my urethra, all I felt was the sensation of having my vulva touched with a q-tip.  Seriously.  That's it.

On the left side south of my urethra, I found one spot that thought the q-tip was a razor.  Everywhere else the q-tip was just a q-tip.

Either side of my urethra still thinks the q-tip is a razor.  Strangely enough, my urethra itself is sensitive but doesn't quite agree.  Then up from my urethra the q-tip is just a q-tip until just south of my clit, where it's maybe a pointy twig.

I also gently pulled down on the six-o'clock part of my vulva, which is how my gynie diagnosed me with vulvodynia in the first place.  That part feels like a really bad sunburn, which is a big improvement over when she first yanked me.

So I guess what I'm saying is that I have a partial hallelujah going on.  My pain really has shifted.  In some ways I feel like it's shifting from interstitial cystitis PLUS vulvodynia to just interstitial cystitis -- and though IC is no picnic, psychologically, the change is HUGE.

Here's what I've been doing, the 2 things I think have contributed to the shift.  I think vulvodynia has many different causes, so this info might be useless for some people.  But maybe someone out there will also see a benefit from what I've done.

Step 1: I started eating really, really simply.

Here's my diet right now, for the past couple weeks:
  • raw vegetables -- asparagus, zucchini, yellow squash, green pepper, celery, carrots, etc.
  • raw greens - Romaine, kale (KALE!)
  • bananas
  • eggs
  • red potatoes, roasted or as hashbrowns
  • very few dates
  • raw coconut
  • raw cashews
  • chicken
  • salt
  • safflower oil
I think this diet is doing me good because it's gentle on my intestines, it's healthy, and it's relatively low in sugar.  I didn't see a major difference in my pain until I cut out my blueberry-banana smoothies and my Larabars (drool...).  (For advice on a simple diet that might mean less pain for you, check out the IC diet.)

Step 2: I'm taking colostrum.

I take 1920mg of colostrum two or three times a day (I try to take it on an empty stomach, and as I eat all day long, that's sometimes hard to do).  I take Symbiotics Colostrum Plus capsules, two in each dose, which I've confirmed with the company are gluten-free (they are NOT casein-free, though).  I'm able to buy the colostrum at a local (health-nut) grocery store.

Colostrum supports intestinal health.  I'm not really sure what the mechanism is; I think it's one of those things that hasn't been studied much yet.  But I remember reading somewhere that it may be that colostrum supports the existence of certain gut bacteria, which are essential to good gut functioning.

The Theory

So here's my theory about crotch pain.  This is totally unscientific, but who cares.  It's better than surveying vulvodynia patients about how their pain makes them feel.

As I've said before, I think vulvodynia and interstitial cystitis are, for some people, pain referred from the intestines.  I have had irritable bowel syndrome (IBS) for years.  Over at CureTogether.com, over 50% (OVER FIFTY PERCENT) of vulvodynia patients reporting multiple conditions have IBS.  Plus there's that pepperoni pizza hypothesis I've referred to so many times, actual research pointing towards a link between IC and intestinal upset.

So my theory: what happens for some cases of vulvodynia and IC is that the patient's intestines get all irritated over years and years of IBS (which is itself a condition of unknown cause; for me, I think IBS was the result of gluten intolerance).  And by irritated I mean having aggravated nerves as well as a flora imbalance.  And all that irritation gets worse and worse until, voila, the coochie is on fire.

Poke your finger into your belly button.  Does doing so set off the nerve endings in your clit and g-spot?  It does for me.  (I've often wondered if I can have a belly-button-derived orgasm.)  Now, maybe I'm wired weird.  I've only talked to one other person about this, and he felt his own corresponding nerve ending tingle, but maybe he was weird too.

But if you do feel it, do you see how maybe the nerves running through your gut down to your coochie could be telling your brain your coochie is on fire when really it's your gut that's suffering?

So, provided all these zillions of assumptions are true, repairing the gut resolves the pain.

And, if all these assumptions are correct, it explains why some of us have massively bad flares (the worst pain I've ever felt) when we take antibiotics: because antibiotics kill good bacteria, which would aggravate the horrible situation our guts are already in.

My plan of attack from here is to find a really good probiotic and add it to my daily cocktail of colostrum and good food.  Then when I've given that enough time, I'll decide what to do next.

I know this information may not help some out there.  Vulvodynia and IC have a trillion different potential causes, which is why they are so hard to treat.  But, as I read about IC over at ic-network.com, we can look at vulvodynia and IC as injuries, and while some injuries are permanent, the fact that they are injuries means there's a chance we can recover from them.  I hope my long post here can help someone else move towards recovery.

Tuesday, February 24, 2009

Will We Celebrate?

I've done a lot of thinking about yesterday, basically spending today in its shadow.  My pain is getting better and better on the colostrum, and now it's to the point where the fact that any pain remains relaxes me -- because if some pain remains then it can't come back.  If/when it ever goes away, I'll be bracing for the pain's return for at least a little while.

I want to tell someone, hey, my pain is fading!  It shifted over to this place now and it feels like this instead of this!  I have plenty of friends I could call up who would rejoice with me, but historically, the people I've felt closest to are my parents.

I've spent the 30 months I've had vulvodynia constantly struggling to feel cared for by my parents.  I've done everything I know to do to get them to understand what is lacking in our relationship, how they hurt me with their constant oversights, and what they can do to help me through it.  But none of it has made any difference.

Before I got vulvodynia, I thought my parents and I had a pretty good relationship.  But the stress of vulvodynia showed me exactly where the cracks lie between us.  The thing is, my parents don't even know the cracks are there.

Like when Alexandra Carmichael told me my story would be in the Vulvodynia Heroes book (which is out today) -- I e-mailed my parents right away.  It was so cool and such a positive thing to come out of my experience, both the book and my participation in it.

I sent that e-mail 12 days ago, and I haven't heard a word from either of them about it.  Not an e-mail, nothing.  How in the world can they not respond to that?!  It's representative of almost all of our exchanges regarding vulvodynia.  I might as well never have said anything.

They still, 30 months later, don't understand the kind of stress I've been under living with chronic pain even though they are the people who have gotten the most details about it out of all the people I know.  They still can't remember that I'm in pain all the time, that I might not want to do things like go skiing, that I might be deathly afraid of eating the wrong food.

And it makes me think -- if I had to have surgery for my pain, would they believe it was necessary?  Would they support me?  Would they take care of me?  Rationally I know they'd be there while it happened, but I honestly don't feel like they'd show up.

It makes me think -- if my pain goes away, will they celebrate with me?  Or will it be just another day for them?

I can't stand the thought of them saying a passing "hurrah" when my pain goes away.  That thought cuts me, probably because I know how likely it is.  So, for now, for a while, I'm just going to withdraw from my family.  Emotionally, I'm at my wit's end, and turning to them without receiving the support I need -- or, worse, like last night, feeling like I've been tossed in a gutter -- hurts a lot more than going it alone.

I don't care if this is dirty laundry.  Let it air.

Monday, February 23, 2009

Car Crash & Dirty Laundry

I got rear-ended today, the third time in about 20 months -- one of which I wasn't even in or near my car for.  My poor little car.

She's fine, still runs fine, just a halfway demolished bumper.  My head hurts, and that's all.

I was stopped at the light for like 15 seconds before the girl smashed into me.  I didn't even see her in my rear-view mirror when I stopped.

Sometimes I feel like the world is pooping on me.

It was my mom's birthday today, so I went straight from getting rear-ended to my grandparents' house.  I called ahead to tell my folks about the accident so I wouldn't have to tell my grandparents too.  My grandpa always asks about my car, and I told him tonight as always that it's running fine.

Our family's dog is sick with spinal stenosis, the same back problem my dad had surgery for a little while ago.  She was on pain meds until today, and now she's back to lying around looking miserable.

I sat alone in the living room for a while reading O Magazine (Oprah materializes when I need her).  When my brother got there, he sat down next to me, threw his arm around me, and told me he was sorry about my car.  Then he told me how he doesn't care when people get sick but that seeing our dog in pain makes him feel awful.

Yeah, he knows about my vulvodynia.  Theoretically.  I told him about it in an e-mail a little while ago but never heard back.

It's hard for me to get mad at my brother.  He has a gentle, loving heart, and he's a year and a half younger than I am which means I'm his protector.  But I want so badly to be mad at him, to really fiercely be insulted by his oversight.

At dinner I showed my mom the raw cashew pudding I made, and she dug her cake fork into it to take a bite.  She does this often, sticking her gluteny utensils into my food and thinking nothing of it.  I told her yet again not to do that, ever.  She started to say to my dad "be sure you don't breathe on---" and I told her again, with the impatience that comes after getting rear-ended and then having a gluteny fork stuck in your food, that I get serious pain if I eat gluten.  She said she just forgets sometimes.

We talked about health care and I mentioned my $400 q-tip test at the vulvodynia specialist.  My dad said "but that includes labs," and I told him that it didn't, that it was just a q-tip.  He looked surprised even though I've talked about it ten times before.

I sobbed all the way home in my crunched-up little car.  I shut off my phones and laid in my bed feeling alone.  Then I got my brain together and called the insurance company with a barely there voice.

I can't help feeling so god-awful alone when the three most important people in my life don't seem to remember what I'm going through every day.  When it's safe for me to write this here because none of them reads my blog.

I just want to run away for a while and go where no one knows me and where I know no one.  Then maybe it won't be so hard not to have anyone to rely on.

Friday, February 20, 2009

Kneecapping My Vulva

Some length of time after I take a dose of colostrum, my pain often (but not always) drops to a very quiet level.  My crotch still feels odd and there's some residual discomfort, but there's no burn and no perceivable acute pain when I'm not moving.  (Walking, twisting, even turning my head can exacerbate my pain.)

So what do I do when that happens?

I squeeze those Kegel muscles until I make something pinch.

Which sets off a minor flare.

Because I am a genius.

I do it to see how far my pain has receded.  Scientifically, it's an important question.  But, hey, Esther -- how about letting the science go for once and enjoying being nearly pain-free?

The colostrum-induced low pain level lasts for maybe a half-hour, but I have hope that it will get better and better.  I did some mad graphing of my pain records the other day and found that besides avoiding the triggers I'm aware of (sugar, gluten), the only thing that seems to have a clear effect on my pain is the colostrum.  I don't really have enough data points to make that inference, but hey, it's hope, so for now I'm making it.

My therapist told me I should seriously consider taking medication (probably the tricyclics) to treat the pain because pain erodes the spirit over time.  And oh yes, it does.  In some ways I'm constantly dissolving.

So she's right about that, but she doesn't seem to understand that taking a drug to dull the pain is completely disempowering.  It's not a cure, and if I'm just going to be dulling my pain, why not dump myself in a coma for the rest of my life?  An extreme analogy, I know, but hey, pain is hard and life is hard.  When life is hard, get a coma.

How about no.  What my therapist doesn't get is that I empower myself by constantly assessing my pain -- live, not dulled -- and trying to decipher its origin and what I can do to resolve it. Even if I'm deluding myself in my quasi-scientific pursuit, at least I believe that I have the ability to become healthy again instead of dull.

Maybe self-empowerment is just another way I kneecap my vulva.  Maybe I should take the pain meds -- I'd probably have leftover pain to try my own ideas on.  But even then, the thought of taking meds makes me retch.  I was on them for bipolar disorder for six and a half years before getting vulvodynia, and I'm not totally convinced they're not complicit in this illness.  Call it paranoia, whatever -- those things are heavy duty.  Hair-falling-out heavy duty.

So for the time being, my therapist can suck it.  I need a lot more defeat before I'm ready to give in.

Wednesday, February 18, 2009

Book Release: Vulvodynia Heroes

Alexandra Carmichael of CureTogether.com has compiled and analyzed the vulvodynia data CureTogether members contributed to the site and put it together in the book Vulvodynia Heroes: 190 Women Share Their Experiences and Treatments, to be released on February 24.

A little while ago, Alexandra tweeted that she was looking for personal vulvodynia stories to include in the book, and I responded with mine -- condensed into about 600 words, somehow.  In exchange, Alexandra let me preview the book, and I have to say, it's an impressive collection of patients' experiences with vulvodynia, encompassing symptoms and treatments and what patients have to say about both.  I doubt there's another book out there like it for any disease, let alone for vulovdynia, which we all know suffers from a severe lack of attention and research.

Alexandra, thank you so much for working so hard to make our collective voice louder!  And to the other vulvodynia and pelvic-pain bloggers out there, thank all of you so much for sharing your stories and constituting the only community in which I know I'm understood.  You don't even know what you mean to me.  I often feel incredibly alone inside my pain, and I struggle to retain hope that any future day will be different than these past 871 (yes, I counted).  I have plenty of friends who care, but there's only so much they can do, and they've got their own concerns.  I live alone.  I don't have a boyfriend, so no one else is invested in the health of my crotch.  I have no one on whom I can rely on a daily basis.  You, the online vulvodynia community, are the single shining light in this gigantic mess.  You really do keep me going.

And Alexandra, your book and your efforts at CureTogether give me hope that someday we'll all have an answer.

Tuesday, February 17, 2009

NVA Cost of Illness Survey

Subject: NVA Cost of Illness Survey

The NVA is seeking women with vulvodynia who live in the United States to participate in a cost of illness survey, which asks questions about lost work hours and out-of-pocket expenses related to having vulvodynia. From a cost of illness survey, analysts can calculate to what extent a particular health condition impacts our economy. It is important for NVA to have this information to convince members of Congress and NIH staff of the great need to increase funding of vulvodynia research.

Participation requires only 3 hours of your time over the next 6 months. With the use of a NVA-supplied calendar, you will keep track of your vulvodynia-related expenses, such as prescription medications, doctor visits and over-the-counter remedies. Participants will anonymously log onto NVA's web site once every four weeks (for six months) to record expenses. Each time you log on, the survey will take 5-10 minutes to complete.

For additional information, or to participate, please visit:
http://www.nva.org/costsurvey/
I've been participating in this survey for a few months. I think it's a good idea, and probably necessary for funders to take vulvodynia research seriously, but I think it has blind spots -- I was told not to record the difference in food costs for eating gluten-free even though that's the one thing that has made a major difference in my vulvodynia. The response was "only over-the-counter treatments" -- well what's more over-the-counter than food?! And what's better medicine than good food? I mean, seriously. And since I'm not taking any prescription meds and I'm not seeing doctors, the only costs I've recorded have been supplements.

So, yeah, probably good if you participate, but a little blinded, as all medicine seems to be, to the necessity of a good diet.

Thursday, February 5, 2009

SOMETIMES I GO CRAZY

Once in a while, I LOSE IT regarding vulvodynia.

I go along nicely, hopeful, living with it, being patient, taking it moment by moment, not over-analyzing, riding above the pain...AND THEN I WAKE UP and realize that my CROTCH IS IN PAIN ALL THE TIME.  ALL THE TIME.  ALL THE TIME.

And then I lose it.

(I'm trying to keep my finger off the shift key.)

When I was a teenager, I despaired in my teenage way that I would never be able to leave my body while in existence.  Why can't I be the sunset?  Why can't I be that tree?  Why can't I be a tire, or a puddle, or a cute toaster?  It drove me CRAZY (ahem).  And then I got addicted to wriggling my body randomly to music because it was the closest I could come to being a sunset.

I think that was prescient of me -- I think I knew that someday my body would become its own torture chamber and that I would be bound not only within its skin but under the incessant doings of an invisible lobster's claw, a netherly mace, the scrape of the devil's fingernail.

Thank Chevy for my car, in which I scream all I want and pretend no one can hear me.  Driving back from school tonight, I cursed everything that has failed me recently -- Microsoft and the city of Cleveland and dimwitted landlords and idiot mechanics -- and I saved the final and ultimate execration for my crotch.  Because it fails me every day.  My body fails me every day.

I've been trying to escape it since before I had reason to.  Now I have reason to, and oh, dear lord, I just want out.

Please note that I have sardonically tagged this post as COPING.

Wednesday, February 4, 2009

Supplements for Vulvodynia & Interstitial Cystitis

I'm early in my journey through the huge number of supplements I've seen recommended for vulvodynia and interstitial cystitis. I'm adding them to my routine one by one so far so I can see their effects. My current and past lists are below, plus reviews.

At the bottom I've listed the other supplements I've read about that I might explore later. Most of those I've gathered from forums, like the one at ic-network.com (is there a vulvodynia forum ANYWHERE?), or on vulvodynia sites like vulvodynia.com.

Current Supplements

Probiotics -- I started with these because I know my gut's not in fantastic shape. I take Acidophilus and Lactobaccillus. Alone, I haven't seen much effect from these, which I know is weird. The brands are reputable (one is Culturelle, can't remember the other), so it's probably not that the little germies in the pills are dead. Still, I don't eat yogurt so I might as well take them.
(Dosage: 1 Culturelle/Lactobaccillus capsule, 2-4 Acidophilus capsules a day)
UPDATE 2/23/2013: I've been taking Saccharomyces boulardii (a probiotic yeast, I use the Jarrow brand) and was taking Fem-dophilus (brand name, simply haven't bought more yet), and these combined have greatly helped my digestion.  S. boulardii eats bad stuff in the gut, including bad yeast, and leaves the digestive tract after you stop taking it.  I figure I should replace the bad stuff, so I take Femdophilus too, which has strains of bacteria that naturally populate the vagina.  I think probiotics are all about finding what works for you.  We all have different balances and imbalances in our digestive tract, so don't stop just because a popular strain or brand doesn't work for you.  I tried Florastor, for example, which is a more expensive version of the Jarrow S. boulardii, and I didn't see a difference.  Jarrow works fine for me.

Magnesium -- I've read good things about this one for fibromyalgia, interstitial cystitis, and vulvar pain. I didn't notice anything from adding it, but it's also supposed to be good for pooping, and I need help with that.
(Dosage: 250mg chelated magnesium twice a day with food)
UPDATE 2/23/2013: I don't take this regularly, but I still have it on my counter to take.  I've started taking multivitamins (irregularly) and mine doesn't have a full day's worth of magnesium in it.

Fish oil -- anti-inflammatory. I think it has a subtle effect for me, but maybe not. Still taking it as it's good for you in general and it doesn't cause a flare.
(Dosage: 1200mg Omega-3 twice a day with food)
UPDATE 2/23/2013: I don't take this anymore, but I think it is a good one to take for general health, and it is super-cheap.  I will add it back.

Colostrum -- good for intestinal health; supports your immune system. Just added it a few days ago and it's been the most interesting one so far. The first several times I took it, about 45 minutes in, I felt a cool shaft (ugh I hate that word) stretching down from about my belly button to my crotch. It was like I had applied a non-crotch-destroying Vicks Vaporub directly to my coochie. Woo! But now it seems it might be making me flare. I've read that sometimes it sets off a flare for a while that then subsides, so I'm going to stick it out at least through this bottle.
(Dosage: 2 pills (1920mg) on an empty stomach twice a day; Brand: Symbiotics)
UPDATE 2/23/2013: I stopped taking this a while ago, probably when a bottle ran out.  I still think it might've been beneficial.  Worth a try.

Former Supplements

Calcium citrate -- for binding to oxalates in food; the oxalate theory of vulvodynia. I've written about this before -- the low-oxalate thing never worked for me. Never saw an effect from this so I don't take it anymore.
(Dosage: 600mg with every meal)

Glucosamine -- good for cartilage; some theorize it helps with all pain. Didn't see an effect, stopped taking it.
(Dosage: 1000mg 1-2 times a day with food)

MSM -- again, promoted for pain, but I didn't see an effect so I stopped taking it.
(Dosage: I can't find the bottle! Whatever it says on the bottle)

Grapefruit seed extract -- helps balance intestinal flora by killing off yeasties. Omigod this one is a mistake for me. First day I took it on an empty stomach -- stomach burn. Then several hours later, lower abdomen burn, right above where I figure my internal female goods are. Then bladder burn on the outer face of it, like right under my skin (a familiar burn -- acidic foods). So the next day I took it with food. Didn't get the stomach or bladder burn, but did get the same intestinal burn. Stopped taking it, but it furthers my suspicion that my intestines are completely corroded down there.

The Rest of the List

Please remember to research supplements yourself and choose wisely (especially the ones that affect hormones -- avoid if pregnant!). There's no set way for someone to react to a supplement -- for instance, some people report flares from marshmallow root, listed below as soothing.

Also, please know that while I try to keep my facts straight, I'm not an encyclopedia. I've just done way too much surfing and taken a lot of notes.

Pain/General Improvement
Chondroitin -- often coupled with glucosamine to treat pain; many with IC say this causes a flare
Quercetin -- marketed as immune support; many with IC say this addresses their pain
Marshmallow root -- soothing
Baking soda -- IC sufferers might stir a teaspoon into water to quell a flare quickly UPDATE 2/23/2013: This has worked inconsistently to quell my vulvar pain.
Guaifenesin -- sold as an expectorant; cited by Dr. Glazer on vulvodynia.com as another doctor's "cure" for vulvodynia UPDATE 2/23/2013: I have taken this while sick (the brand Mucinex, for example) and haven't seen an improvement from it, but it may be worth another try.
Grape seed extract -- antioxidant
L-Arganine -- amino acid

Inflammation
Fish Max Ultra (product name) -- fish oil
Min-Inflamm (product name) -- marketed for general inflammation but some IC sufferers say it helps
Turmeric -- yes, the spice
Corn silk -- also a diuretic
Flax seed oil -- same idea as fish oil, but some say we don't absorb it as well
Vitamins A & E -- general anti-inflammatory or anti-itching

Menstruation/Hormones
Dong quai -- general maintenance of reproductive system
Licorice root -- balances estrogen levels
Dandelion root -- cleanses liver which (supposedly) helps balance hormones UPDATE 2/23/2013: I can't speak to its hormonal effects, but it makes a strong but delicious tea!
Black cohosh -- menstrual aid
Motherwort -- menstrual aid, antibacterial

Intestinal
Intestimax (product name) -- supports health of small intestine's lining
Permeability Complex I or II (product name) -- support intestinal flora & mucosal lining
FloraMax (product name) -- probiotic
VSL#3 (product name) -- super-heavy-duty probiotic  UPDATE 2/23/2013: I trield VSL #3 and it gave me a serious increase in my vulvar pain.  It was very strange and I have no idea why it caused me such pain.  I was taking a low dose recommended for IBS.  Use with caution!
Prelief (product name) -- neutralizes acid in food
Garlic -- antimicrobial

Urinary Tract
Cranactin (product name) -- concentrated cranberry; cranberry can cause horrible flares for IC sufferers, but some feel this helps more than hurts
SuperGreens (product name) -- urine pH
Uva ursi -- antimicrobial
Pipsissawa -- antiseptic