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!)
- red potatoes, roasted or as hashbrowns
- very few dates
- raw coconut
- raw cashews
- 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.
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.