Tomorrow is Day 1000 with vulvodynia. If I counted right. But I can't say that without also thinking of Day 1024, important if you like math or computer science or physics. So I'll have to figure out what day that will be, but not right now because I'm out the do'.
Last night I saw Star Trek. Really good, plus lots of vajayjays. And the giant drill? Totally my urethra.
All the flowers I planted this year close at night. I've always considered such flowers as the best vulvodynia symbol. Sigh.
I've been listening to Ace of Base constantly, and here's the song of the present, to all my flower girls. Please, Mr. Agony, release them for a while!
So it's only been 5 days on the antibiotics but it's not getting better, and I shouldn't despair yet but I am anyway. It's my coochie and I'll cry if I want to.
So I scheduled myself for a cystoscopy on July 13 at 10am. I can always cancel. The doctor himself performs it, which makes me feel good. It'll be like a followup plus AHHHHHHHHH. I know people have reassured me that cystoscopies are not so awful, but when your urethra is a house of demons, you don't have such confidence. I'm sure they'll numb me, but I'm just as sure that the following day or two will be the same as (my two-with-vvd-total) post-sex days.
And I asked the nurse for some Diflucan because I'm pretty sure that's happening too. It's not really bad, but any yeastie activity is going to make me feel worse and topical stuff is not happening right now.
So (I begin again) I'm reading The Fall by Albert Camus because I've become wholly existential. Not that I wasn't already, but with existentialism, the curtains come in after a while and blind you to life's pointlessness and you live fine for a while. (I don't think it's possible to be really depressed over and over without becoming an existentialist. I now look at depression as the point of greatest honesty. Yeah, maybe because I'm depressed. So what. Don't you see that nothing, nothing matters, and we all know why...yes, I reread The Stranger too, as my existentialism kickoff.)
So so so, in The Fall Camus at one point writes
Do you know Dante? Really? The devil you say! Then you know that Dante accepts the idea of neutral angels in the quarrel between God and Satan. And he puts them in Limbo, a sort of vestibule of his Hell. We are in the vestibule, mon cher.
The test was negative but they're putting me on antibiotics anyway!!!!!!!!!!!!!!
This is what I expected, especially after digging through my records to see what my gynie tested me for two years ago -- same test. (Duh on my part -- I forgot about her tests until after the appointment, and I got the appointment so fast there wasn't time to pull records.)
So I'm going to go pick the meds up in like an hour....
And hopefully not die from pain like I almost did last time I took antibiotics.
Other v-girls: do antibiotics give you INSANE PAIN? I was on them for a long time when I was trying to get diagnosed and I don't think they made it worse...but then I went on them for a UTI after diagnosis and spent a week crying on the potty.
Anyway, I'll let you know what happens. OBVIOUSLY.
No big hopes, no lack of hope -- just hope, and knowledge that whatever happens, I'll be okay.
P.S. Almost forgot, next step with this doctor is a cystoscopy. I.e., teeny camera traveling up urethra. YEOWCH.
Tonight, UNABLE TO STAND MYSELF, I took myself out to Chipotle, a pretty reliable place for gluten-free food as far as I know. I've been craving the cheesy spicy meaty mmmmm for a while, so I figured, why not.
The thing is, food isn't what it is in your mind. When I went back on gluten for three weeks to get the Celiac blood tests done, I made a list of everything I wanted to eat in that time -- a list I won't even try to reconstruct because it was so very incredibly singularly Dionysian.
But as I hacked away at my list, I found most of the foods weren't as good as I remembered. Most were like, huh, I used to revel in this? Even a glazed donut from Dunkin did not stand up to memory -- the most essential item on my list. Here are the three things that actually tasted as good as I remembered:
Cheddar SunChips
Orange Milanos
KFC anything
So at Chipotle today, eating the cheese and sour cream that will make my tummy owie tomorrow, of course it was the same thing all over again. Like, yeah, this is good, but it's not changing my life. It's not even changing this moment of my life.
Before I went gluten-free, I didn't care about what I ate. Fuel, that's all that mattered. I was fine with whatever it was as long as it was easy, and I often didn't eat much anyway. Having to change my diet -- and having my diet echo in my pain -- has made food a huge figure in my life, a celestial object, and yet now more than ever I know that food isn't ever what we think it is. We unknowingly ascribe to food hope and celebration and release and reward, but the food itself can't ever measure up to the meaning behind it.
(Unless it's KFC? That 11th spice -- meaning?)
Topic #2 is harder to write about because I know my family read my blog. Well, my parents don't (even though I invited them to SUBSCRIBE BY EMAIL...no, I don't get it either, but at least they read when I DIRECTLY ASK THEM TO READ AN INDIVIDUAL POST, I THINK. Anton, you told me I'm never passive-aggressive -- does this count?), but my aunt does, and my cousin(s?), and this is a subject I just haven't talked about with ANY of my family, ever. But if they're okay listening, I'm okay talking about it.
No, I am not coming out as gay. For starters.
But sexuality has never been a binary thing to me -- never, not even as a kid. I remember my first sexual fantasy, before age 8 -- it was a threesome, two girls and a guy. And, for accuracy, it wasn't actual sex; it was more like sexy overtones. HOW a 7-year-old gets that idea in her head, I have no idea, but I guess these things seep into children's minds somehow.
I feel pretty evenly attracted to guys and girls. And here's a fun fact: when I was on Prozac a few years ago, not only were my moods cycling every few days, but my sexuality was cycling too every day and a half or so, and exclusively: one day it was NO BOYS, EW EW EW, and the next day it was NO GIRLS, EW EW EW. Go figure that one out.
I'm sure someone could find a way to call me a homophobe for thinking my sexuality oscillated when I was on Prozac, but I've been called a homophobe for even more loosely related statements... If Prozac can bar you from orgasming (and it can), I see no reason why it can't cause you to reinterpret turn-ons.
Anyway, I've never dated a girl (though I have done other things with them). I'm not sure if it's by social custom or what -- I've had crushes on girls, but very few of them have panned out to something more than fleeting interest. But really, it doesn't trouble me too much because I really, really like guys as well, and they take up more than enough time.
My mom once told me that if I were gay, she'd feel bad because my life would be "harder." I think what she meant was the way society is about homosexuality right now, but when I think of my gay friends, my main concern is that their dating pool is so much smaller than mine. I want them all to end up with the loves of their lives, and if I'm having trouble, AHHHHHHH on their behalf.
My dad just commented on the Facebook quiz I took that called me a tomboy (0% girly). Says he, "I think we may have failed you." At first I thought he was being serious.. Then I thought he was joking. Now I just don't know. Because I've never felt judged by my parents for my level of girliness, but in the summer, he does tell me I should get a pedicure.
I'm rambling, but I DO have a coochie-pain point: lately, as I've grown ever more wary of the penis (or the penis-thought, even), I've been lamenting my outside-the-gay-community life. I hope that doesn't sound stupid -- opportunistic, in a way; based on my condition. Because it isn't. I think I'm just getting to the point where, on top of saying every other truth about my body, I can say this one too. To everyone, not just close friends -- because I've whined enough privately about not knowing where to meet girls.
Like, I was watching House last night, seeing Thirteen drown her sorrows in other girls, and I was so jealous. So jealous. No, I'm not looking to be a sex addict. My friends used to call me Samantha (of Sex and the City) but a recent Facebook quiz told me I'm Charlotte. Things have changed. My coochie's made me less flippant about sex if only because I have to protect her.
And I was never Samantha anyway. I'm always just the least prude of everyone around me, except when I'm around John and Hannah. I love you guys; you make me feel average!!!
Sorry I keep name dropping (lol). I just need to purge this to sleep and I'm not really editing.
POINT: I don't know how to meet girls, and it's getting me down. And I don't know how to meet guys either, so of course I don't know how to meet girls. And overall, I'd just like to feel like a sexual being again on a regular basis and not just during a serendipitous episode of House or when a beneficial friend passes through town (maybe I'm still Samantha...Samantha Somewhat). I'M 29 AND I'M NEVER GOING TO BE THIS HOT AGAIN. AHHHHHHHHHHHHHHHHHHHHH.
The culture takes a week to 10 days, which means tomorrow at the earliest, and probably more like early next week.
You will be the first to know. I'm set up to blog from my phone.
In the meantime I'm hoping that I won't have to tell 100 different people I have syphilis.
And more seriously, I am sicked out by the possibility of having an infection down there for so long. I got screened for all STDs right when this thing started (except syphilis? See what I mean?), so I feel fairly comfortable with the idea that they got that right...I guess...but still, having an infection in your crotch for this long CANNOT be a good thing. I'm worried about the babies I haven't had yet that I really want to have someday. What if all this negligence has totally fucked me over?
Ugh, I have to put it out of my mind because of all thoughts, that is the one that REALLY, REALLY gets me. MAD. PEACH.
I'm sequestering myself in various ways to keep my mind from it -- library, hugely long hemorrhoids-be-damned walks around the city, trying to do as many pullups as Linda Hamilton does in Terminator 2, etc. My instinct when I'm waiting for tests (I feel practiced at it by now) is to go into hiding until the results come back. As far as I'm concerned, I don't exist until the doctor calls. I'm only writing this because I'm so freaked out for my proto-babies.
Yes, I still get my period. But it's not as regular as it used to be. Which, yes, IS PROBABLY FROM THE STRESS AND THE PAIN. It used to be regular nearly to the hour; now it's usually a few days late if not more (especially when my friend Julia visited me with HER period -- 3 weeks late. I'm very sorry your name doesn't start with an M...Menstrual Mulia. And I knew the second you told me you had your period that I was on a new schedule). Point: rational thought does not win right now BECAUSE I SAID SO.
I can't believe how impatient I feel for the results after so long living with the pain. I'm freaked out in multiple ways, either outcome. I mean, no bacteria, okay, keep going. I know I can do that (I can), tons of practice. Bacteria, all the thoughts above, but hey, YAY!, maybe antibiotics will get rid of the pain, and any lingering pain (or baby destruction) I handle as it comes.
But, for instance, for perspective, so you see my point, say it's a treatable infection: there was a crazy hanging out beneath my balcony last night, like so much Romeo, trying to woo me with tales of how pathetic and insecure he is. In the olden days, I would've been like, crazy, you are crazy. I'm going to toy with you until you explode. Last night, uhm, I toyed with him almost until explosion (where is this mercy coming from?), but I was terrified of anything physical happening between us, ever. Not because he's scary (no, just crazy) or repellent (no, just crazy), but because I kept thinking of how awful it would feel to have sex with him. I don't don't don't want to hang onto the pain, but realistically, even if it goes away ever, it's going to take some time to adjust to non-pain.
Fearing its return, relearning how to enjoy my body, unsure of how it happened in the first place...etc.
Okay, I feel better now. Just a little tense. Back to things that aren't this because this doesn't exist right now and neither do I.
Edit: And now I'm thinking (why am I still thinking?) that my gynie, trusty as she is, might've actually tested for the bacteria on this test already...I'm sitting here cursing all past doctors but really, she did a thorough job. So I dug up the scribbles I took down when they called me with those results and there is a test on there ("other (microplasma)" (which I think might actually have been "mycoplasma"...yes, googling)) that could've covered this stuff. (No "syphilis," though. See???) So...okay, now I am disheartened even before hearing back. Yay. Am I happy now?
I called the urologist today at 12:22 p.m. They asked me if I could be there at 1:15 p.m.
Not some podunk urologist either. No, the Cleveland Clinic, where they have you fill out your history on Speak & Spells
that have nonsensical screens like this
CAN WE PLEASE JUST DECIDE WHICH WAY THE KEYPAD GOES? Phones and calculators disagree and now the Cleveland Clinic picks a third way? So I was born 1800 years after myself?
Anyway, they gave the Dude a beeper:
Okay, it was a tracking device so they could "locate me," not a beeper. Gotta quote The Big Lebowski whenever you can. (Yes, that is my Dumb & Dumber shirt underneath my sweater.)
My gynie is of a branch of the Cleveland Clinic, and the vulvodynia specialist I went to last August is at the main campus, where I went today. But this time I went to the kidney & urology part, and omg, I think I did good.
I saw Dr. Sandip Vasavada. He talked through my history and symptoms with me and then I got in the stirrups. He swabbed my vagina because, as he explained, bacteria inhabiting the urethra are usually also present in the vagina. I was HELLA HAPPY not to have to get a urethral culture -- I got one at the appointment where I got diagnosed with vulvodynia, and it was like demons shooting out of there.
Then he stuck only the top of the speculum in and did some tests with his fingers. He pulled down on my vagina, towards my anus, which was super-painful as usual, a classic vulvodynia symptom. Then he poked here and there and asked if I was further pained, but I couldn't really tell where he was poking because the other pain -- vestibule and urethra -- was so overwhelming.
Then we were done, and I was relieved. I was tearing up during the exam. I usually retain my composure even for my annual, but that was just too much activity. And of course I'm still feeling god-awful down there.
After I got dressed, the doc told me that my urethra feels "spongey," which is typical of urethritis. He said when he poked my bladder itself -- through my vaginal wall -- I didn't experience increased pain, which points away from interstitial cystitis. OH YES! He said it's possible I have IC but that it really seems to be contained to my urethra -- and therefore -- get ready for it -- ready? -- it's likely BACTERIAL.
So he's culturing for abnormal bacteria, and we'll know in a few days.
He said that empirically, just from my exam, he'd feel comfortable treating me for urethritis, but that we might as well wait for the culture to come back.
I know, right? Bacteria. Like I asked every single doctor up to and including my vulvodynia diagnosis -- "Could it be some bacteria you don't usually test for? COULD IT BE SOME BACTERIA YOU DON'T USUALLY TEST FOR?" Egad. Two and a half years later...
Of course, no confirmation yet, but even if the test comes back negative, I am SO HAPPY to be in good hands, FINALLY! A quick list of the reassuring parts:
He said my pelvic-floor muscles seem to be in good shape. HE CARED & CARED TO NOTICE & TELL ME!
He said usually with urethritis, antibiotics take away all the pain, but that if I have residual pain issues (or have developed vulvodynia separately) I can see a pelvic-floor therapist and listed a few. HE CARED AGAIN!
He said that if the test comes back negative, we'll probably have to go into my bladder with a little tiny camera. (YEOWCH.) He says an MRI is possible but probably won't be necessary because I don't seem to have abnormal tissue anywhere down there. HE CARED AGAIN & USED SCIENCE!
He let me talk back to him intelligently without being shocked that I might know what I'm talking about after two and a half years living and studying a disease. HE CARED AGAIN & RESPECTED ME!
Holy fucking shit. Thank you Dr. Vasavada. I FINALLY FEEL LIKE I'M IN GOOD HANDS.
Yeah, it makes me a little insane that my....974 days of pain could be due to bacteria that everyone (including another urologist) refused to believe in. But. Would I trade in this experience? Uhm, hells no. See otherblogposts. (Unless it's messed with my half-a-babies. That grosses me out.) (NO, not pregnant with multiples. Half-a-babies = eggs.)
Then, driving away, I asked myself if I would trade in the experience if it lasted for years and years or even until a decades-away death. And I still don't have an answer for that. I can't imagine living with this pain interminably. I think that's why I've been losing my cool lately -- because it's seemed more and more likely that there would be no resolution, never anyone who cared enough to figure it out.
BUT NOW THERE IS SOMEONE.
SCIENCE! FUCK YEAH!
Every time I've seen a new doctor or read about a different treatment, I've never known where the road would go. It's happened countless times, and it's the same case here. But knowing that I found someone -- a whole department, it seems -- who cares enough to stick with this until it's resolved -- cured or not -- makes me feel like DANCING ON ROOFTOPS.
I was always jealous of Dick van Dyke.
OMFG SO JEALOUS OF THE CHIMNEY SWEEPS. WHEN MY CROTCH FEELS BETTER I'M TOTALLY LEARNING HOW TO DO MOP CARTWHEELS. To this song:
