dealing with pain and dysfunction



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.

Advertisements

Trackbacks & Pingbacks

Comments

  1. * Esther says:

    Thanks for sharing your story! I think I linked to your blog from Facebook…don’t remember, done so much reading tonight. Anyway, recently started my own vulvodynia blog (http://madpeach.blogspot.com) and put yours in the sidebar. Hope that’s okay! And, of course, I’m so sorry to hear your story, but I know what you’re going through. Hugs.

    Posted 9 years ago
  2. * Indy says:

    Hey, I just found your blog from Mad Peach. OMG your story is just like mine!!! Have you been to http://www.pelvicpainmatters.com/? It is a must read for those doing pelvic floor PT. Check it out. I’m pressed for time right now so I have to run but I can’t wait to come back and continuing reading all your posts. Best wishes to you!

    Indy

    Posted 9 years ago
  3. * Sarah says:

    Hi,

    I found this post pretty informative. I’m at Cornell University right now, and looking around for a good ob/gyn…but it looks like you’ve had a lot of bad experiences and had to go to the city. Would you recommend any of the doctors in Ithaca at all?

    Sarah

    Posted 7 years, 7 months ago
  4. Hi Sarah! Always nice to know there’s a fellow cornellian that understands. I know there are differing opinions on Gannett (to put it lightly), but Dr. Beth Kutler is hands-down one of the best gynecologists I’ve ever seen. She’s not a pain specialist at all, but for annual exams and any other pesky pelvic problems, she’s very vulvodynia-friendly: super gentle, caring, and understanding.

    If you’re looking for a specialist, I haven’t found one in Ithaca, sadly. If you already have a diagnosis and are in need, there is a great physical therapist down at the Cayuga Med branch at Island fitness (if you’re currently able-bodied and have some free time, it’s walkable on a nice day). Other than that, I’ve got down to NYC. Do let me know if you’d like a rec for a specialist there though!

    Posted 7 years, 7 months ago


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: