dealing with pain and dysfunction


Category Archive

The following is a list of all entries from the Uncategorized category.

Dinner with Inga Muscio

I had dinner with Inga Muscio, author of Cunt: A Declaration of Independence last night, care of the Cornell Womens’ Resource Center.  We mostly discussed her newer book, Autobiography of a Blue-Eyed Devil, which I will definitely read if I can get my hands on a copy.  After dinner and discussion, I asked her to sign my copy of Cunt and said that I had a few questions for her, as a woman with female sexual dysfunction.

Though she was a perfectly pleasant and fun woman, I was very nervous to ask her these questions.  My internalized stereotypes about feminists (though I proudly identify as one), as well as her writing style, led me to believe that she might be brash or dismissive about my concerns–concerns I share with other women who have vulvodynia.  However, she was very open to suggestions, critique, and gave me a good reminder that we all fuck up sometimes.

I asked her about the line that’s something about how men only love women when we are “consumer… bitch, concubine, accountant, orphan, punching bag,… threeholestopenetrate…” (copypasta taken from Feminists with FSD, whose post I revisited before dinner).  As someone who has a dysfunctional, umm… hole, that can be pretty alienating.  My lack of “normal” sex-having abilities has been pretty self-esteem crushing, and to read that line from a fellow feminist, one who’s writing about vaginas, someone who’s supposed to be on my side, was a little hurtful.  Reading that was like having someone tell me “yep, your suspicions about men are correct, you are unsexy and therefore worthless.”

Her only response was that yeah, she fucked up, she’s sorry, and if I wanted to talk to her more about it (or if anyone else who felt similarly when reading Cunt), I should definitely email her.  She said she’d take that–and other issues that have been brought to her attention–into consideration when publishing the next edition.  We talked a bit about her dedication to alternative medicine and the medicalization of women’s bodies, and while she was far less than willing to change her stance on that, she did say that she understands the necessity of Western medicine for some women.  She signed my book and thanked me for coming, and I’m very glad I got to meet her and discuss pelvic pain with her.


MTV True Life

Hey internets, I got an email from MTV’s True Life today!  They’re filming a documentary for the series with a working title of True Life:  I Can’t Have Sex and need one more participant.  I talked to a producer about my story for about 45 minutes earlier tonight and am super excited at the prospect of doing something like this!  Even though I’m far from an aspiring actress and telling the teevee about my vagina problems might be a little… uncouth, I think my regular readers will know that uncouth is kinda my thing and I didn’t exactly come with shame installed, so maybe participation in a documentary would be a great step for me.  I totes took an acting class in high school, so camera ready.  Right?  Eh?  Ehhh?

Plus, the best part about having this blog is getting wonderful emails and having supportive conversations with women from all over the world–going on True Life would be like a way bigger version of that!  Anyway, if you’re interested in throwing yourself in the ring of possible participants, email tlicanthavesex@gmail.com.

(In other news!  I started an Outdoor Yoga class!  And my instructor is adorable!  A couple classes in I feel like I’m totally going to tell him alllll about pelvic pain and request a few poses that might be able to help with pelvic tension, which I’ll pass on to my very favorite corner of the web, of course.  Once I get more experience I’m definitely returning to the Yoga for Better Sex that I started this summer.)


Unsatisfying Update

I really miss writing here. I’m just still not comfortable with it after some of the things I wrote about were used in (what I still feel to be) a personal attack on my character. Sigh. Hopefully I’ll be back eventually :(


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.


my new favorite typo

VULVODYNO.

ROOOOOOOOOOOOAR!


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.


Introduction.

Today I made an appointment with the campus sexual health therapist. I figured if I’m going to start making emotional strides, I may as well start keeping track of any progress (assuming there is any).

So! A bit about me.

I have been dealing with vulvodynia for almost five years, though I was only diagnosed by a pelvic pain specialist in summer 2007, less than a year ago. I started experiencing pain with sex from the very beginning–what a wonderful introduction into the world of intimacy. Figuring that pain the first few times was normal, I kept at it. At best, I’d cringe and imagine myself somewhere else, and at worst, I’d end up crying and bleeding. After awhile, I just couldn’t deal with it. I felt like there was something wrong with me, personally–that I was broken or doing something wrong and that it was my fault. I had put up with the pain for two years before asking a doctor about it. I was at Planned Parenthood for something completely unrelated, and ended up getting referred elsewhere. I went to a string of gynecologists who all told me one or more of the following:

“It’s all in your head.”

“You’re just not relaxed enough–why can’t you relax?”

“Gee, have you tried lube?”

“I think you’re making this up for attention.”

“You’re too young to be having this problem.”

“You’re too young to be having sex, anyway.”

“You just need to get over it.”

“It’s your fault for having premarital sex–this wouldn’t be happening if you lived your life at the foot of the cross.”

This has led me to seriously despise doctors. And another thing that belongs in an introduction of myself: I am a staunch atheist. I do not want doctors telling me that I am in pain because baybee jesus says so. Unfortunately, when this occurred I was 16 and not mentally prepared to (loudly) call bullshit on a doctor. Instead, I got out of the stirrups, got dressed, and walked out. However, there was one doctor that attempted a few treatments that did not work for me. First, estrogen creme, which did nothing for me. Lidocaine gel 2%, which burned a lot. I was never able to use it properly, mostly because saying “just a moment, I need to numb myself” tended to dull the mood a bit. Elavil (a tricyclic antidepressant) also did nothing for me–except make me feel like I’d been run over with a truck. All I could do was sleep, so I stopped that as well.

After all that, I was resigned to failure. No one had even told me that this was a normal thing and that there was a name for it; that lots of other women were going through the same thing. I started feeling worse and worse about myself. Luckily, I had been in a relationship with the same person during all of high school, and he told me that I was more important to him than sex, and that we could deal with this together. I went off to college nine hours from home, thinking that, if nothing else, I had a pretty good relationship and wouldn’t have to worry about that. Fast forward a few months, and I find out that he had been cheating on my for three of the four years that we were together. Looks like sex is pretty important after all. All of the work I had done to convince myself that “despite being dysfunctional, someone could really care about me for me” went entirely out the window. It took a lot of trust for me to think that someone could be in a relationship with a person like me–and that’s gone too.

As I fell apart from all of that nonsense, a new friend was there to pick up the pieces. It’s now a little over a year later, and we’re still dating. I was really worried about having a conversation about what, exactly, is wrong with me–after all, with the first guy, we had to find out together so it wasn’t like I could either share or withhold anything. So I pretended like everything was fine. And that was a terrible idea. It ended up being a ridiculously awkward and poorly-timed “conversation” (it was mostly mumbling and me wanting to run away) that would have been aided by knowing the words vulvodynia and vaginismus, or even just knowing to say pelvic pain. Instead, I muttered something about a burny, stabbing, tearing pain… thing? Yeah, it wasn’t pretty.

But we’re together, and it doesn’t present much of a problem. Except a recent “but there’s always something wrong with you” that was really crushing. It takes a lot of work to realize that people who don’t experience chronic pain just ARE NOT going to understand what I’m talking about. I don’t think that anyone means to make me feel awful about myself, but it’s tricky to remember that when close friends are talking about sex and I just can’t relate. No, it’s not great, and no, I have never been in a sex coma (unless you mean that point afterwards where I’m slumped over in the bathroom knowing that I have to stop crying so I don’t seem like I despise him).

Eventually, I got fed up with all the nonsense that surrounds this condition and the I’ve-never-heard-of-it-so-let’s-give-up attitude that I was getting from doctors, and I turned to my best friend the internets. In the blogroll are a lot of resources that led me to self-diagnose with vulvodynia, a suspicion I later had confirmed by Dr. Ken Levey in Manhattan. I finally got a diagnosis last summer. It turns out that I have vaginismus and vulvodynia. My pelvic floor muscles spasm uncontrollably when contacted, and I am unable to relax them. I was told that I would need pelvic floor physical therapy.

For a moment, I felt like a million pounds had been lifted off of me–I finally had an official diagnosis! So naturally, my mother and I went shopping (we had to go to Manhattan for a doctor, after all). Unfortunately, it hit me that vulvodynia is something that has. no. cure. when I was in a dressing room at H&M. I lost it entirely, which was too bad because I had to get out of there immediately without buying anything. I got it together enough when we got back to Ithaca to figure out where the hell to find a pelvic floor physical therapist–quite the uncommon profession. Luckily, there was one at Cayuga Medical, the hospital in Ithaca.

I’ve only made it to a few appointments, as our schedules are not compatible, but I’m currently working on purchasing a biofeedback machine to use at home. If you’d really like to hear me rant, ask me about insurance coverage for Cialis (makes insecure men think that their penis is getting bigger) vs. coverage for a biofeedback machine (helps overcome a chronic pain condition). Just guess which one is fully covered and which one they’ve never heard of and have termed “non-traditional therapy.”

Since I’m not having much luck with the physical aspects of vulvodynia, I’m going to start working on the emotional ones. I have my first related therapy appointment tomorrow afternoon, and am going to keep track of how I’m dealing with all this. So, welcome.