dealing with pain and dysfunction

Funny AND Sad.

From an interview with Dr. Moldwin, professor of Urology at Albert Einstein College of Medicine:

Question: Why is there pain the day after intercourse?

Dr. Moldwin: That is like getting punched in the eye.



The Feminist Perspective on Female Sexual Dysfunction.

I do strongly identify as a feminist. However, if someone (Our Bodies, Our Blog, among many others) is going to tell me that female sexual dysfunction (FSD) is being created by pharmaceutical companies in order to make a profit, they can FUCKING SHOVE IT.

I would be jumping for joy if someone manufactured a pill that could make me better. Imagine, a pill that would make the pain stop, make the self-consciousness, the arguments, the doubt, the fear stop. I don’t care how much money I would have to give to big pharma. I don’t care if some feminists declared that my sexuality was being pathologized. I don’t care if “dysfunction” sounds ugly to a feminist blogger’s delicate sensibilities (and that’s saying a lot, because I’m the first to decry the stereotype that feminists = oversensitive). It makes me feel better to have a medical vocabulary to use, like the problem is a real one and that it’s not all in my head, as I’ve been told by so many doctors. Perhaps they can consider that when they accuse doctors and pharma of “making a disease.” Perhaps they can consider that when my foot is up their ass, as well.

Really, “looking to social change and education”?  Thanks a whole fucking lot, that will totally help with my uncontrollable pubococcygeus muscle.  Yeah, I want some social change in my vagina.  Morons.  I understand how that can help women who’s FSD is emotionally based (trauma leading to vaginismus, etc), but to claim that all FSD can be treated with social change and education is simply ludicrous.  I don’t understand how the leap is being made from a drug for FSD –> a narrow view of acceptable sexual behavior.  Anorgasmia isn’t acceptable to a lot of women, unless they are asexual.  And my pain sure as shit is not acceptable to me.  Who are they (bloggers and the people they cite, such as Leonore Tiefer, a psychotherapist at NYU, incidentally the same place where I got my vulvodynia diagnosis) to tell me and their entire audience that FSD is being manufactured by big pharma?  This makes me very angry.  And very disturbed.  I don’t need any more impediments to my medical care than I’ve already got.

First Session.

I had an appointment with the campus sexual health therapist today. It wasn’t anything like what I had expected–but I’m not sure what that was. I guess all I was looking for was someone to acknowledge that I’m not crazy and that vulvodynia is really real and really something that real people really have. For real. I have so internalized that message that it’s “all in my head,” after all, doctors are supposed to be very smart and trustworthy, so it’s been very difficult for me to come to terms with this disorder as a real physical condition that afflicts other people too.

I didn’t get any admission that there are people at Cornell that have the same problem (you know, what with patient confidentiality and all that business), but it was good to talk to someone. She turned it mostly toward relationship issues, rather than the self-consciousness I was hoping to address. I’m not very forward with therapists. In any event, there’s a lot I need to say to the person I am dating–I’m going to try to leave him as a person out of this account as much as possible, as he does not yet know it exists. Also, I may eventually put up links in places where real life people could find them, and whoever knows me also knows him. Anyway. There’s quite a bit to be worked out. Most of the relationship advice was pretty commonsense, but thinking that I should start a conversation about my pain and how we should deal with it together and actually doing that are two completely different things. It was great to actually say some of these things out loud–like what boundaries should be set, physically and emotionally. I’m worried that when it comes down to it, I’ll continue to go about business as usual instead of actually trying to start that conversation. We’ll see.

The good part about talking to a sex therapist as opposed to a regular therapist is that the talk of intercourse vs. oral and orgasms and what hurts, exactly is very frank. I also have anxiety/depression issues, but have never been able to find one therapist who’s prepared or who I’m comfortable enough with to bring up all of these issues with. I’m not particularly over the moon for this particular sex therapist, but I feel like I could begin to connect the anxiety to the pain.

For now, I’m going to make more appointments “as needed,” seeing as how I don’t exactly have a ton of free time for my mental health. Which is a problem in and of itself.


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.