Tuesday, December 15, 2009

Just When You Think You're Ahead...

Forget everything I said.

Forget part of what I said. Working on my pelvic-floor muscles is definitely keeping my vestibular pain level low. It's pretty cool. I try to check in regularly down there and make sure my muscles are at Floor 1 of the pelvic-floor elevator, and if I feel a pain surge I drop the elevator and it usually helps.

After days of lying in the bed with a cold, working on my pelvic-floor muscles and monitoring my pain, I thought I was in the clear. My pain levels were steady -- I still had pain in the northern part of my vulva, but I had less urethral pain and little to no perceivable vestibular pain. Peeing was better, and it wasn't elevating my urethral pain levels afterwards. I thought the remaining obstacles were muscular and that I would work them out over time.

Then I got a burning flare in my urethra after peeing that made me drop the dishes I was washing and run to the bed to relax my muscles as much as possible. That helped a little bit, but the flare was still there. I did some internal investigating and my muscles were relaxed. Then I coughed -- and pain zapped through my vulva as my muscles contracted, which had never happened before.

My diet was pretty limited while I was sick -- I didn't have much of an appetite and I was in love with toast. The flare came as I started eating beyond the toast. Food allergy? IBS? What? What vulva, what do you want from me.....EVERYTHING I DO I DO IT FOR YOU. I AM BRYAN ADAMS, FOR YOU.

Anyway, fine. The gastroenterologist is sending me to an allergist, after which we'll choose our next move. My preliminary bloodwork could hardly have been more normal, which probably ruled out some things in his head. He did celiac work on me even though I told him I was gluten-free and had had that bloodwork come up negative before -- negative again. But he hooked on the gluten thing, saying that the people who get instantaneous diarrhea from gluten are the tip of the celiac iceberg. So I may be headed for an endoscopy to confirm I'm just gluten intolerant. Doesn't make much difference to me except that I'd probably be more careful if I had celiac, eating more carefully while out, etc.

I'm still on Effexor, so I don't care :) My psychiatrist is upping the dose to see if it helps me care about stuff ("motivation"). Apparently norepinephrine is what motivates you, and that modulation usually kicks in at 150mg of Effexor. Not sure I'm looking forward to being motivated again, though. TV good. Bed fantastic.

After I told him I'm having all this internal conflict, maybe that's why I'm ambivalent, maybe my weird internal life is the root of my inaction...feeling "morally conflicted about how to live"...he came back with a fifteen-minute speech citing religions and philosophers, stories, books to read, music to listen to. He appears to be my guru?

Thursday, December 10, 2009

Pelvic-Floor Dysfunction, What's Your Function?

I've spent the past month or so sleeping.

First I started Effexor and with it started sleeping at least twelve hours a day. But because I was on Effexor, I didn't care. I became an undepressed slug, the kind of slug every depressed person aspires to be.

Then I got a cold that didn't make me feel sick, but because it includes a hacking cough and I'm a waitress, I've been home for several days. Lying in bed, because I'm on Effexor and I don't care.

(My psychiatrist says Effexor is one of the better meds for "motivation." I had philosophical qualms about getting motivation from a pill, but it looks like those are moot.)

Somewhere in there I went to the urologist, who confirmed that I don't have interstitial cystitis but that I definitely have pelvic-floor dysfunction, aka dysfunction of the muscles hiding between my legs.

PFD didn't surprise me. After three years of coochie pain, I figured my muscles would be upset. I figured that's why my pain originated in my urethra and took several months to progress to my vestibule -- a gradual pelvic-floor response.

The urologist suggested that I've had PFD my entire life, citing my toddlerhood UTIs as evidence. She called it a "voiding disorder." Maybe that time I saw blood in my kiddie potty wrenched my coochie up in a long-term way. Maybe that's why I have IBS with constipation -- a wrenched-up rectum.

Except that apparently I'm not really constipated. When PFD affects your butt, it makes it hard to poop, and it makes you feel like you empty incompletely. When I poop, I just poop, and then sometimes I run around a little like my cat does.

But I didn't say that to her. Instead I told her how much diet affects my pain -- and she said that until I get my gut under control, no physical therapy is going to fix me.

So off I went to the physical therapist and the gastroenterologist.

I had my first physical-therapy appointment the day after Thanksgiving. Let's just say the thought of that appointment didn't do anything to relax my pelvic floor. I was imagining instruments and measurements and investigation, all of it requiring me in stirrups while the therapist pawed her way up there.

Instead, the therapist spent a lot of time evaluating my body as a whole, looking for weakness or tightness and examining my posture and flexibility. She gave me a whole bunch of stretches to do that don't involve my vulva directly at all. A queef of relief.

Then she had me lie on the table for the first face-to-vulva meeting -- no stirrups, and she stood above me to watch over the position of my legs. She stuck her finger in and found the spot where the urologist had been poking that made it feel like someone was drilling into my bone. She massaged that muscle and taught me very gentle stretches to relax it.

She explained that the pelvic-floor muscles are like an elevator: they should sit at Floor 1 and drop to Floor 0 to poop or pee. Mine sit at Floor 2 or 3, creating all that tension and pain. She had me push out on my vulva like I was peeing and called that Floor 1 -- but it felt to me like opening my vulva up for peek-a-boo.

Before I left, she gave me some handouts and asked if I had anyone who could help me with the interior work.

"Are you in a relationship?" she asked.




"Close friend?"

I'm not sure who in my life would stick their fingers up my cooch to help me with my physical therapy, but I won't even ask a friend to bring me Robitussin.

I went home, put the papers on my kitchen table, and thought about pelvic-floor exercises in the future tense. Then I got sick, started doing a couple of stretches during my 23 hours in bed each day, and got curious.

I knew part of the reason I had trouble relaxing my clamshell during the therapy session had been that I had no idea where she could be poking to give me so much pain. I had never felt pain in that place before! I didn't even know that place existed! And though I had looked at plenty of pelvic-floor diagrams and examined physical models, I still had no real idea where the pelvic-floor muscles ran inside my body.

So one lonely, sick evening, watching Family Guy, I clipped my middle fingernail and entered the pleasure-dome. It took a little wandering, but I found where those ladies had been poking. The pelvic-floor muscles sit on the sidelines just inside the vagina. When I pushed my finger just past them and pressed down on the top of the muscles on the right side, through the vaginal wall, it was like a toothache.

Then I understood what "pelvic-floor dysfunction" means when the muscles are too tight: my coochie is a clamshell with lockjaw.

Most of my muscle pain was on the right, so I spent the rest of Family Guy massaging the right-side muscles until they were purring like a small puppy. I found that pushing my anus and perineum down to Floor 1 helped me relax more than pushing my coochie out, letting the muscles fall away from the center of the vagina into their purring puppy positions off to the side.

I've been doing the same exercise daily since, but after that first day my muscles are relaxed every time I go spelunking. Of course, I am lying on my back with knees bent each time, which helps. I try to relax all of those muscles throughout the day (I'm sick, not much else to do), but I find that Floor 1 doesn't feel like a rest position for me yet. I wonder if it will eventually -- are my muscles just shorter after being cramped up so long? I basically feel like I'm trying to fart all the time.

As for the pain -- the burning in my vestibule has gone down considerably, exactly the way it did when I ate "the good diet." However, I still have pressure and pain as my bladder fills and pain with urination, though it doesn't feel like a burning pain in my skin anymore. I figure the bladder problems are related to the muscle problems, but I have yet to find the coordinates that can turn that pain down as well.

I've also found that I have tightness and pain in my right hip in all different directions -- where it meets the crotch, back and front, outside, and even all the way up at the top of my pelvis -- while my left hip is still a teenager. Again, I haven't found the trick there either. That'll be a question for the therapist.

So in the end, this is the goose I've been chasing all along -- what is it that refers intestinal problems to my vulva? It's the muscles! The urologist thinks IBS with constipation is caused by PFD, the physical therapist thinks IBS and vulvodynia share a tissue issue, but they are both wrong! Okay, I have no idea who's right, but for me it's pretty clear: I got pelvic-floor dysfunction after trying so long to manage IBS with my muscles -- abdominal, pelvic-floor, etc.

Of course, all of my womanly pain must be due to pelvic-floor dysfunction for that to be true, which we haven't proven. And my IBS was actually pretty mild when I got vulvodynia compared to five or so years earlier, so my theory doesn't explain why the pain started when it did.

Otherwise, I have no doubt. Diet affects my pain because the happier my gut is, the less my muscles feel obliged to rein it in. The good diet I arrived at after months of trial is low on major digestive culprits, including gaseous wonders like beans and broccoli. And after I went off gluten I no longer regularly went half a week between bowel movements.

Poop as a cause makes vulvodynia sooooo much sexier. And I'm not sure that seeing the gastroenterologist will reveal anything I don't already know. I'll write more about that in a future post. I've been thinking of you all and hope you're feeling good.