dealing with pain and dysfunction


The Camera My Mother Gave Me

I just walked to the library, checked out The Camera My Mother Gave Me by Susanna Kaysen, bought a latte and a ginger cookie, and read the whole book, all within two hours.  Judging by a receipt that was once used as a bookmark, I was at the same coffee shop as an alumna of my school.  She sat in the same place with the same book exactly six years ago to the week.  Oddly, it’s the closest I’ve ever felt to someone with pelvic pain, knowing that this book describes my life exactly and that once, someone was sitting in the same place thinking the same things.

An odd thing happened while I was reading, though.  A friend of a friend sat down at my table and said hello.  He asked what the book was about, and I said it was about medical problems and the troubles that the author had with getting diagnosed.  I said that I share the same medical conditions and so it’s a terribly interesting book for me to be reading.  Of course, he pressed onward and asked what kinds of conditions I meant, and rather than state outright what the book is about, I steered more towards my gastrointestinal issues and then told an anecdote about ruining my right knee a few years ago, and oh, I’m just so afflicted, here’s a list of everything that’s wrong with me other than my hurty vagina.  Though reading this book made me feel stronger today, I still don’t have it in me to treat pelvic pain like a knee injury.

I got back to reading eventually, and I tore off bits of my cookie bag to mark the passages that really affected me, and ended up with a great deal of the book marked and no more bag for my cookie.  Many of the places with my makeshift bookmarks already had folded corners.  The plan was to transcribe some of the most useful or touching or depressing or infuriating parts for everyone’s benefit, but really, I’d just encourage you to read it.  It’s a very simple and quick read, but one that I found very valuable.


Consent and Vulvodynia

Of the handful of times I’ve had penetrative sex, I’d say the majority were nonconsentual.  I’d now like to qualify this to point out that the vast majority of times I’ve had penetrative sex were with my first boyfriend.  I don’t want to feel like I’m required to protect the feelings of previous sexual partners or prevent someone from feeling uncomfortable about this subject matter.  Because really, you should feel uncomfortable.  I feel uncomfortable.

Naturally, I’m using the more feminist approach to consent, often called “enthusiastic consent” or “yes means yes” (as recently popularized by the 2008 anthology, Yes Means Yes:  Visions of Female Sexual Power and a World Without Rape).  In the enthusastic consent model, it is assumed that the “neutral state” of sexual partners is nonconsent, and sexual activity should only go forward if both partners are clearly and enthusiastically consenting.  This is opposed to our society’s current model, in which partners are always assumed to be in a state of consent, and sexual activity will go forward until a forceful “no” is heard.  More simply, enthusiastic consent means that consent is not the absence of “no” but the presence of “yes.”

I’d like to discuss my experiences with consent while suffering from vulvodynia and vaginismus.

There have been many times when I had sex because I thought I had to.  Because I hadn’t been diagnosed and thought that saying no would mean I was admitting that the pain was real and that there was something wrong with me.  Because I thought this time maybe it wouldn’t hurt–but when it did, I thought I wasn’t allowed to say no since we had already started.  Because saying no would make me a bad girlfriend.

In our current model of consent, there’s nothing wrong with this.  I didn’t say no, so that makes it okay.  Move along, nothing to see here.  But I was definitely not an enthusiastic participant in these encounters.  Most of the time I would cry.  I was good at hiding it, though, so he wouldn’t notice and feel badly about himself.  Every time I would dig my nails into the palms of my hands until I drew blood, just so I’d have a different pain to focus on.  Every time I would go to the bathroom afterwards I would sit on the toilet to pee and it would just be the most excruciating, searing pain.  I had to do it though, or else I’d have a couple weeks of agony with a UTI.  I’d sit there slumped over, my face at my ankles, and cry and cry and cry.  How could I be so weak?  Why couldn’t I just force out the necessary NO that was required to stop this from happening?

For me, pelvic pain has added a terrible layer of complication to how I think about consent.  How can I be an enthusiastic participant in anything that is hurtful?*  Besides that, my own fear of repercussions from saying no muddle things further.  It can’t be rape if I hide what pain I’m in, if I pretend like I’m okay, if I act like I’m into it, am I right?  Who knows.

The encounters that are most confusing to me are the ones that I instigated.  Where I’d talk them into it, they wouldn’t want to hurt me but I’d insist.  The times that I was enthusiastic, but for the wrong reasons.  What does it mean when I’m the one coercing, I’m the one forcing and rationalizing.  I’ve had doctors tell me that I was making up my pain in my head or that deserved pelvic pain, and I believed them.  On the outside I’d get real indignant about it, but really, I thought they were right.  If I was making it up, I could force myself out of it.  If I deserved it, well, why not have sex?  It’d make me a “real” girlfriend and I’d get what I deserved while I was crying in the bathroom.

I guess I had a lot of different reasons for instigating, now that I think about it.  The fear of hurting me led to a lot of rejection.  The fear of being hurt led to far more, of course.  Sometimes I’d get so furious and angry about having to constantly reject someone I loved or about being rejected by someone I loved.  So I’d force myself to have sex, I’d think that maybe this time it’d be different and if it wasn’t, once again, I deserved it.  Sometimes I’d get so distraught over my disappearing sex drive that I’d instigate in order to prove that I was Clearly Okay and obviously I Still Love You, or else why would I do this?  Typing this up now makes me feel delusional.  Sometimes I’d get so far in denial that I’d think I had magically overcome vulvodynia and this time was it and sex was going to be delightful and so I’d instigate, and once again end up crying in the bathroom.

And what I’ve been up to recently, though I kind of hate myself for it, is just how I’m proving to myself that I’m normal.  Well, normal-ish, at least.  I’ve spent so long feeling completely and utterly fucked up and broken that I’m just trying to make myself believe that I can be just like everyone else.  I guess it’s that and a combination of being crushingly lonely, but even people with totally functional vaginas can be lonely.  I feel like it might be a different kind of lonely though, the kind that we have.  A lonely that is worried about being lonely forever.  There’s a woman in an online support group I’m in who’s worried she might never get married, might never have kids.  It breaks my heart over and over again.  That kind of lonely.

There are millions of reasons why people have sex.  It’s just the more that I think about it, the more I hate my reasons.  I don’t know if that means that I should stop or go to therapy or have sex with someone I’m in love with or just take some sleeping pills and shut the fuck up already.  I don’t know.

Though I believe in enthusiastic consent on a general level, I’m not yet to the point of feeling that I, myself, am deserving of it.  I need to fix this part.  I wrote this earlier and I don’t know what I meant by it.  I think it’s something like this:  I really want to believe in enthusastic consent, I really do.  I like the notion of it, it makes sense, it’s egalitarian, it starts to dismantle the rape culture in which we all live.  But in recounting my experiences and my reasons for having sex, I’m drawing a box around myself that positions my consent as different.  That’s the part I’m uncomfortable with.  How can I do that?  Why would I feel that my enthusiasm isn’t as important?  I just can’t make myself believe that some of the awful reasons why I’ve had sex fit into a new definition of consent.  So, what?  Have I raped myself, then?  That doesn’t make a damn bit of sense.  None of this does.  Once again, I’m going to end up coming back to this.

I’m going to end up adding to or editing this post over time, but I feel the need to get out what I can immediately.

*Use of “hurtful” is an attempt to differentiate from “painful” as pain can be both consentual and welcome


Oh, bikes.

Things have been pretty quiet on the vulvodynia front lately.  I haven’t been provoking any pain, or really doing a whole lot to try to make things better.  It’s been a non-issue for almost two whole weeks, and that’s pretty exciting.  Okay, not true.  People keep inviting me to go bike riding, and I can’t think of a good excuse as to why I can’t go.  I don’t have a bike, but if they offer me a roommate’s or tell me one more time about RIBs (Recycle Ithaca’s Bicycles) I’m going to lose it.  Of course I would like to go for a bike ride, it’s beautiful here in the summer, the weather has been nice, it would be great exercise… but sorry, it would hurt my fucking vagina.  Couching the issue in vague terms like “pelvic pain issues” just seems to weird people out.  Not that there’s a line of people out the door asking me to go ride bikes with them, but… whatever.  It’s happened enough in the last month to annoy and sadden me.