dealing with pain and dysfunction

Specialist visit III

I had another follow up visit with Dr. Levey this morning, and I’m feeling a bit unsettled.  I haven’t been doing enough as far as biofeedback/dilator therapy goes, and I totally got called out on it.  I make a lot of excuses to myself about why I can’t get started properly:  month-long yeast infection from hell, too many classes, too much work, not enough sleep, too much work, too much work, too much work.  Well, fine.  I’ve just gotta drop a class and sleep less.  I think I’d be a little less determined if the pain wasn’t gaining on me.  I’ve been having odd spasms lately, and I don’t really care for that.  There’s also some irritation bullshit going on, and I would really like to walk around/wear underwear/sit with my legs crossed/whateverthefuckelseI’mnotabletodonormally.

Speaking of which, I had a glance at my file when the doctor left the room, and apparently at my last visit I was diagnosed with vulvar vestibulitis.

Okay, sweet.  Thanks for letting me in on that little secret.  Maybe I’m just pissed at having to pay out of pocket and needing an (incredibly expensive) ultrasound at my next visit.  But… maybe I’m just pissed in general.  HOW did I leave that office without hearing about this diagnosis?  Oh well, I guess.  That’s what happens when you enter into the system of western medicine–you know fuckall about your own health and you pay lots of money for your continued ignorance.

See, toldya I was pissed.

Anyway, my glance also afforded me the full name of the mystery ingredient in the topical cream.  It’s Neurontin, aka Gabapentin.  Because gabapentin is always prescribed off-label, I’m now completely reassured that there isn’t anything sketchy going on here.  There’s one pharmacy in midtown that mixes this stuff up, and I’m sure that it could be replicated anywhere else, so long as the prescribing doctor was comfortable doing so without regulation.

Other things from the file that made me LOL:

“More than 50% of this visit was spent counseling the patient”

“Current problems – detail view”  (this section had its own little scrolly bar, hah)

Alright, back to business.  I mentioned the various period-related problems I’ve been having, and now there’s the possibility that all of these things are related.  I’m not sure, how, exactly, that would work.  Maybe he just meant that some people have shit luck?  But now that means that I have to come in for an ultrasound next time, just to see what’s up in my uterus that might be making it rebel so horribly.  Dr. Levey also suggested an MRI, but… no thanks.  Last time I had to take out my face metal.  They told me it would be fifteen minutes, so I removed the lip ring and handed it over.  I woke up in the MRI about 45 minutes later, and the piercing had closed, I had to shove it back through, I was far away from my official titanium-ball-screwer-onner… it was just bad news all around.  I am so not willing to do that again (and this time twice, and through cartilage, eww).  I just keep diverging from the point.

Hopefully, the ultrasound will show that I’ve got a massive uterus that’s totally fit for the Mirena.  Levey’s office has an anesthesiologist and they would be willing to put me under for the insertion.  But it would cost $1400, aka more than a month’s rent in Manhattan.  I’m such a fucking badass, I can handle it.  I’ll just go to Planned Parenthood, pay the $150 and hope for the best without being knocked out.  There are plenty of rich pill-poppers at Cornell, it wouldn’t be hard to find something to take the edge off, and I’m sure it’d cost a hell of a lot less than $1400.

Either way, I’ve got to do something about this, and fast.  I’ve had cramps for a week, and for no good reason.  I tried to start stacking packs of pills so I wouldn’t have to deal with this shit at all, and it severely backfired.  Instead, the cramps got worse and the bleeding lasted longer.  Oops.  I’m still not able to take any OTC painkillers though, and this is absolutely unbearable.  I mean, I have to function anyway, because nobody really cares about cramps.  They’re just a lady-pain, made up in my weak little lady-brain, after all.  God, I’m just crampy and mean and bitchy and rambly, I’ve gotta stop writing to the internet now.  Speaking of rambly, I’m getting a tattoo tomorrow, I’m back in the city, I’m not doing any work for a day or two, I’m going to eat some Indian food, omg yay!  Alright, we’ve all had enough.  I swear I’ll start writing decent posts again soon, sorry.



I’m sitting in studio trying to get work done.  I don’t know why but I am in a dead panic thinking about this doctor’s appointment next week.  Seriously, it is over seven days from now, and I feel like I am about to have a full on panic attack already.  I think it’s because I just wrote it down so I won’t forget to go.  So now I am thinking about it, oh god.  Oh god.  No one is here but a bunch of grad students I don’t know and my phone is dead so I have to tell the internet.

Internet, I am freaking the fuck out.  Already.

What’s worse is that I finally made a consultation appointment for the Mirena IUD.  That’s not until early March, but I’m nervous about that, too.  I can’t stay on top of the pill well enough for it to be effective, I’ve only heard complaints about the patch, the ring is way too expensive and there’s no generic, and I’m too scared of the new Norplant because one of my cousins had the worst experience EVAR with old Norplant.  I need something hormonal because without some kind of regulation I’ll spend at least a quarter of every month curled up around a heating pad, unable to move or function.  How ridiculous is that?  I can’t have sex but I desperately need birth control.  My, what an inconvenient body I have.

I’ve tried hippie methods of all kinds, believe me.  None of them worked out, although the lavender oil massage was pretty fabulous.  Now that my stomach is permanently ruined from years of triple-shot espressos, a lifetime of way too much stress, and tons of painkillers, I can’t even take Advil for a headache anymore–let alone the extra-strength crap I’d take to get through the cramps of doom.  Even with like four of those shiny blue and yellow Tylenol I still couldn’t deal back before I was on the pill.

Anyway, it seems that Mirena is pretty much my last resort on the period-control front.  I’m spotting all the time from not taking the pill regularly enough, and Mirena would basically end my periods-from-helllll for five whole years.  That sounds so fabulous.  It’s just that… the q-tip test is hard enough, I can’t even imagine how the IUD insertion is going to go.  When I absolutely *must* have pelvic exams, I have to request the pediatric speculum.  I wonder if they’ll be able to use that for the insertion.  It’d be nice if they could just put me under and I could wake up with a shiny new Mirena in my uterus.

Maybe they could put me under next week, too?  It’s just a follow-up appointment, it’ll be fine.  I can calm down a bit, at least.  OH LOL, let me tell you something hilarious, my friends.  When I scheduled this follow-up, the receptionist gave me a card that said “FU Pelvic Pain.”  FU Pelvic Pain, indeed.

Huge post, aka Lindsey has no friends in real life.

So here she is, whining to the internet.

Just so you know, this post originally started with “A quick profanity-laced rant, since I wouldn’t want y’all getting too optimistic and hopeful from the last post.”

It turned into 800+ words.  Oops.  Anyway, here goes.

Being back at college fucking sucks, as far as psychologically dealing with pelvic pain goes.  I swear, if I have to hear about one. more. drunken hookup, I am going to lose my fucking shit.  I overhear the same damn conversation a few times a day.  Walking to class.  In line to get lunch.  In an elevator.  Really, in a fucking elevator.

I always tried to avoid feeling envious of “normal” people with “normal” sex lives who can “normally” fuck whoever they’d like.  But you know what?  I absolutely cannot handle it here.  I have never been more crushingly jealous in my entire life.  Well, except maybe when my fuckup of a sister got lots of attention and undeserved presents.  That sucked too.  But really, to have “omg guess who I did this weekend” as constant background noise really just serves as a convenient reminder of how Not Normal I am.  I know that nobody gives a shit and their conversations have nothing to do with me.  I know they aren’t being intentionally hurtful.  I know that they are free to treat their sexuality however they’d like.  But it’s just such a visceral reaction for me to want to just scream at them that they’re taking it for granted!  Not everyone can do what they can do!  Every time, I get that awful help-my-chest-is-caving-in feeling.  I hate it.  Even just thinking about it.  It’s a Friday night.  And pretty much everyone else here can do what they wish with their bodies, and I am incapable and broken.  Fuck.  This quick rant got longer and more depressing than I had intended.  Since you’ve read this far already, I’ll keep going.

The larger problem here, of course, is not the absence of sex, but the absence of a sex drive.  Maybe that’s what I’m really jealous of–sexuality in general.  I dunno exactly what my problem is, but it’s fucked up and I’d like to fix it.  Perhaps I’ve always been like this? I don’t think so.  I’ve certainly felt more sexual in the past than I have for the last couple months.  As much as I hate pop culture’s depiction of vulvodynia, I have always felt that Sex and the City’s misguided and inappropriately lighthearted romp through pelvic pain was unintentionally apt.  In the show, Charlotte is diagnosed with vulvodynia, and the gals call it a “depressed vagina.”  Maybe it was a “sad vagina,” I don’t quite remember.  Of course she was cured within a week after popping some tricyclics.  But the “depressed vagina” part is kinda accurate, I’ll admit it.  It’s depressing to feel abnormal.  It’s depressing to feel like the person you’re in bed with would be having a billion times more fun with someone else.  It’s just… sad.

All the reassurance in the world isn’t going to cure a lifetime of being inundated with the message that a woman’s worth is tied to her sexuality.  Although I logically know that current reassurance is legit, past experiences with “oh, it’s okay I totes love you despite how messed up you are.  just kidding!  i’m fucking our friends!” is still way fresh in my mind, even a couple years later.  Even typing out my belief in the legitimacy of said reassurance is kind of scary, because there’s *always* the miniscule chance that someday it might come back and bite me in the ass.  At least in the last relationship I kept my naivete and trust off the internet.  It would have been a lot more painful if I had a visible reminder of just how much I believed it.  Anyway, that’s diverging from the point, which is this:  I think my sad vagina finally got the best of me and killed my sex drive.  I’m pretty pissed about that, by the way.  Unfortunately, I can’t will it back into existence, so I’m not sure what to do.  The concept of sex seems nice, but my body is just sort of “meh” about the whole thing.  Or maybe it really is all in my head this time and it’s my body that’s fine with it?  I can’t even figure out what the problem is, so I don’t know how to begin fixing it.

Anyway, I have to go to a party soon.  Can’t wait for the early afternoon flurry of texts asking me to “guess who I hooked up with, tee hee hee!!”

God I am such a cynical bitch.  I hope you’re all okay with that.  Just in case the people from the internet were wondering, I’m just as sardonic and mean in real life.

Vulvodynia Heroes

I just got word today that the first crowdsourced vulvodynia book is set to be released on February 24th, and my blog is to be featured in it.  The book is called Vulvodynia Heroes:  190 Women Share Their Experiences and Treatments, and is available here from CureTogether, either as a paperback or .pdf download.  The absence of real women’s voices from healthcare has been one of the largest detriments to receiving proper funding for research of conditions that affect women.  This book is only possible because of the wonderful support networks that we have built online and in our communities–something that’s awfully hard to do with a topic that’s so often shouted down, when it’s even talked about at all.  The patriarchal doctor-knows-best attitudes that surround pelvic pain (and, frankly, almost all other women’s health concerns) have gone on for far too long.  It’s high time we make our experiences heard.  Perhaps this book will be a step towards validating real women’s experiences and furthering our sources of support.

New piercings and understanding vaginismus

Last Friday I got two new piercings–left and right low helix (about where this guy’s top one is, the barbell).  btw bmezine dude, if you ever end up here I’m sorry I linked to your ear without permission and I’m also sorry that I hate your jewelry.  I hope the black and green thing you’ve got going on is just bad photoshopping.

Anyway, mine are just past where the cartilage starts, so that means they’re going to take their sweet time to heal up.  They bruised after the first night, and the right side is still pretty bluish below the jewelry.  I’ve been sleeping on a rolled up towel so my ear hovers above the mattress and doesn’t have any pressure put on it (it’s way too hard to just try to sleep on my back all the time).  And it hurts like all hell breaking loose if anything touches the jewelery or the immediate surrounding area.  The first couple times I touched them while changing clothes or brushing my hair, I didn’t expect the pain to be so bad.  Now, a few days later, I am a lot more careful and I automatically flinch if anything comes near my head.  The flinching is very obvious and visible.  The right side is feeling much better now, but I still flinch if something is coming toward me–regardless of how much I actually hurt.  Once the flinch becomes a conditioned response, there’s no stopping it.

Since I’m a huge nerd and spend my days writing to the internet about my vag problems, I of course started relating the new-piercing-flinch to the sex-fucking-hurts-flinch, aka vaginismus.

I’ve always understood how vaginismus develops and why, what the mechanisms are, why I have it, etc etc.  When I say “understood,” I mean on some kind of academic or meta level.  Vaginismus is an unconcious “blink reflex” or flinch that develops in the pubococcygeal muscles.  I know this.  But what I don’t really know is how my physical response actually works.  I’m not sure if that makes sense, but the different ways of knowing are completely separate for me regarding this issue.  The flinch from vaginismus is not obvious or visible, in fact, it’s hardly noticable on it’s own.  The obvious part is the pain.  Because I can’t really feel that flinch–there is no big jump or pulling away like there is with the piercing flinch–vaginismus has always just seemed to be part of the pain condition.  Really though, it’s the same kind of thing that’s making me jerk my head around this week when I think something’s about to touch my ear.  I subconciously remember how much I’m about to hurt, and flinch away.  The conditioned response is exactly the same.

However, I won’t stop flinching until my ears have felt better for awhile and I’m used to the feeling of pain-free ears again.  The same goes for vaginismus–until I have the vulvodynia completely under control and there is no pain that continues the conditioned flinch response, I guess the vaginismus is here to stay.