Monday, November 19, 2012

Notes on returning to life

Scarlett O'Hara looking mad with the caption "I wanna go out and see my pony."

It's been a few days since I returned to real life after my five-day lie-down fest, and even that short time away has me looking at everything with fresh eyes.  So here are some notes.

1. Compartmentalizing.

I got really good at compartmentalizing over the years, packing the pain away in a separate box in my head.  Actually, the first three years were horrible.  I had no life.  I quit my job, started school, dropped out of school, didn't date, drifted away from friends, chased doctor doctor treatment data info doctor info idea treatment data doctor.

So then I died, in a way.  I had a summer of despair (sunbathing and Ace of Base), and that fall it all imploded.  A bit later I kinda climbed out, and then more, and then early the next year I started dating what's-his-face.

Yes, I dumped him last spring.  But if there's one thing that helped me compartmentalize over the past three years, it was being with him.  So in a way, he saved me.  That relationship saved me.

Since then, let's face it, I have not returned to my life.  It's been rough.  Not that I think I made the wrong decision.  Oh no.  I needed to be out of that relationship.  But as I've gotten over him, I have NOT gotten back to having a life.  Then I did my experiment and suddenly the walls between life and vulvodynia collapsed.

Esther need life.

2. Pain.

My pain didn't disappear when I was lying down, but it wasn't this crazy hateful pain that I've had since my experiment ended.  It's funny how a slight break in the clouds makes their return seem even darker.

And the peeing, it's back to pain throughout, and let me tell you, first there's vulva pain, then pee pain slathers a feeling of...okay, I had a description here, but it sicked me out.  It just makes me feel disgusting.  So read this if you want instead.  It's nicer.

So I'm seeing the pain anew.  It's no good, but it's not a shocker.  The bigger feeling is how pissed off I am that people have to go through this.  I remember when the pain first started and how scared I felt.  I know there are other people out there feeling the way I did, and I wish I could tell them that it will be okay, but I'm not a very reassuring case!  All I can say is that it's possible to live with the pain, and maybe, like in #1, you'll come to compartmentalize and live well despite it.

3. Pants!

Remember how I wrote that I had given up on pantslessness?  I take that back.  Now that I have a reminder of what less pain feels like, I realize what I'm doing to myself wearing pants and sitting too much and all the other ways I've been aggravating my pain.  I have to give my skirts a pep talk.  And I really want those damn pink genie pants.

A long skirt with yellow fringe boots on one, fantastic bright pink genie pants on another

4. Sex.

Having dumped what's-his-face several months ago, it's been as long since I had regular sex.  The last time I worked at a desk, I was having regular sex.  Big freaking duh that I was in horrible pain the whole time!!  I think I knew that at the time and was in such a screwy fuckball of a life-moment that I didn't care.  I'm trying to make sure I stand for most of the day at work, and I see a clear difference in my pain when I do.  Should I feel good that I don't have to deal with sex pain too?  Because no, I don't feel good about it.

5. Dating.

Dating with vulvodynia is mentally problematic.  First of all, I'm kinda like half-enthusiastic about dating.  There are these two guys, and they both are really nice and not losers and I have had lovely dates and great conversations with both of them.  And?


It's not all vulvodynia.  Part of it is that, okay, I know you date and you get to know someone and then maybe something happens between you two.  (This is what people tell me.)  So, patience.  But I've found that if you don't feel that zing! early on and you stick around for a while anyway, you're going to end up convincing yourself that it's there.  Because there's this person in front of you and gee, it would be really nice to be DONE with dating, so yeah, I think I can see it---yeah, he has a nice laugh---and he listens to my favorite band---and he wears nice pants----


Vulvodynia adds a layer on top of the attraction issues.  It's distracting and it can inhibit your sexuality.  That's where I was the first three years I had vulvodynia.  There were long stretches where I had no sexual interest whatsoever, a complete reversal from where I had been before.  You feel gross and you don't want anyone thinking about "down there."  You don't want to think about "down there."  You make out with someone and your "down there" roars its reminder that this whole process will never be the carefree funfest it once was.

Oh god, why did I write that!  Now I want to cry!  Why does that last sentence hurt so bad!!!

Vulvodynia also makes you ask why anyone would want to date you.  Once they know it all, all the shitty, shitty things about you, the pain and the mental issues and the drama, drama, drama that you feel is your entire life because there's always a problem, always a goddamn problem!

These two guys, they would both deal with it in a gentlemanly fashion.  I know it.  What catches they are, right?!  Please, zing me!

6. The Ending.

I have to do something about this.  Re-entering life, I have to admit it: I have not been doing anything for my vulvodynia beyond avoiding physical triggers, avoiding food triggers, and taking my Neurontin at night, all of them with variable dedication.  It's clear by now that my vulvodynia is not going to go away on its own.  Which...I am.......conceding.................

as of now!

I have to be brave and persistent and somehow keep my hope up.  Doctor treatment doctor idea info treatment data data doctor treatment info doctor data idea idea idea doctor doctor info treatment treatment info data doctor data idea treatment doctor info info idea info data doctor treatment treatment go go go go go go go go go and keep going and go again.

I am already writing the end of my vulvodynia story in my head.  Right now, it's been six years, one month, and let's say 17 days since my vulvodynia began.  The story of the end of my pain begins, "After seven long years..."


  1. The last part seems rather like a suicide note. Please go to my lady parts doctor before giving up on life!! There IS another side. You CAN have your life back. I promise!

  2. No, no, no!! Sorry if it's phrased weird -- I changed it -- I meant that I'm already writing the story of how my vulvodynia ended, and it starts at the end of my seventh year of pain, when I'm cured :) Thanks though.

  3. Hi Esther and Ladies - I found this wonderful product that relieves my vulvodynia pain instantly. It's called Promescent. Sounds a little weird, but it's a numbing agent designed for men to apply on their penis for premature ejaculation. My OB-GYN suggested that I try it and I swear, this stuff is fantastic. The greatest part about it is that it's a spray! So no touching the hoo ha area when it's applied, which I know from lots of experience is absolutely torturous. I realize that most people are probably now using the Facebook forum so I'm going to post this again over there. Please let me know if you have any questions about it -- I'm happy to chat with you.