Sunday, December 30, 2012

Comments are open

You can now comment anonymously on my blog.

I've heard from a couple people that they didn't leave comments here on the blog because there's no anonymous option.

I took the anonymous option away a while ago because someone left a couple of nasty notes on my posts.  Turns out that the nasty note-leaver was a college classmate.  I used the time he commented to deduce which link he had followed to get here and which visitor he had been, which gave me his IP address and his location.  Thanks, StatCounter.

(Don't worry: I am not otherwise stalking my readers.  I've hardly visited StatCounter since Blogger began tracking stats, which it only does in big picture, but that's okay because all I really care about is if I got 40 or 60 hits today.  Or 65?!)

The nasty commenter had visited my blog via a link to it on a social network open only to people associated with my college -- students, alums, professors, and staff.  That is a small pool of people, and his city was a suburb, so with a little searching, I figured out who he was.

He is kind of an asshole, so after I identified him and figured out that the posts weren't random, I felt a little less like the universe is a mean place to be.  But I decided to require a login for comments anyway -- I felt that the subject of pelvic pain is too serious for someone to be able to shoot by and crap on it.

Now I've decided to open comments again.  I've set it up so I have to review comments before they are posted, which will at least keep the nasty comments from becoming graffiti.

Most importantly, I don't want to keep you from commenting just because you don't want to use your identity or don't have the right account.  Several times, I've wanted to comment elsewhere and decided not to because it required me to use my name -- and more and more, link to my Facebook account!  Are you serious??

So you can now comment without logging in.  Happy commenting :) and thanks for stopping by.

Saturday, December 29, 2012

Witness

INTP: Leaving the scientific revolution for the last moment.

Today my life was uncluttered enough that I peed and saw how I wanted to curl up into a ball and die afterwards because of the pain.

Life is usually more distracting.  You pee and then you have something to do or think.  I guess I had things to do or think after this particular trip to the toilet, but I had nothing that needed to be done or thought.

I think I am out of touch with my emotions.  I am an INTP according to Myers-Briggs, which means I think, and I spend a lot of time thinking, and in my head I'm always thinking.  Extended analyses of my personality type always tell me that I have no idea what I'm feeling.  My usual response is, "I don't see how that's relevant."

So I found myself curled up in bed under the quilt, and the inside of my body looked like ash.  To an INTP, this means, "I've got to remember to take the kielbasa out of the oven."

I wrote the whole rest of this post in fragments and got to the last paragraph and wrote that, thereby yadda-yaddaing all the emotional stuff, mostly because I couldn't come up with any more jokes.  And I don't know that I can tell the difference between expressing this emotion now versus all the other stuff I've said on my blog that seemed easier.

If you dropped someone into my body and they went pee, they would go to the emergency room.  I don't understand how I do it and I don't like to think about it.

I feel like I need a thesaurus.  "Terrified" is a great word but it doesn't work when you already know that peeing hurts without further consequence.  I've read about post-traumatic stress resulting from chronic pain.  Maybe I am post-traumatically re-stressed, but that is just me making a joke again.

But so what?  Can't I feel terrified if I feel terrified?  Okay, I am terrified.

And it's exhausting.  Like, I pee multiple times a day!  But there's nothing I can do, and I don't even know why I'm terrified.  Is it just that the pain is so bad?  I check the kielbasa and the slavish under-animal that lives on my back keeps its eyes wide.

Without metaphor?  I won't let myself feel terrified.  That's a good thing?  Not when you are curled up in bed and the inside of your body looks like ash* and you're not doing anything but you don't know why.

But I will say this for INTP: our rational nature is how I can blog about my vulva in the first place.  It is illogical to be scared of sharing my story, and it is of more value to the world to share it than it is of value to me to keep my privacy.

*This is synesthesia, so it's technically not metaphor.  Says the ever-discerning INTP.

Friday, December 28, 2012

Heartburn

I am on Wellbutrin.  Everything I eat gives me heartburn.

The last antidepressant I took, Effexor, also gave me heartburn.  It hauled me out of a bad depression and drove me around until I found Catfish, but when I got there, he was baking me a cake and I was puking it up in his toilet.

Puking like this: eating his cake, feeling nauseous, getting up off the chair, walking to the bathroom, shutting the door, and gagging myself until I puked enough that I was pretty sure I wouldn't be nauseous anymore.

I think I might have kind of explained to him that it was the sugar in that way you explain something that sounds really dumb to your new boyfriend, but he kept feeding me cake, and chocolates, and ice cream.  It was his version of hunting.  And I kept eating his kills.

I went off Effexor and could eat anything again.  Then he and I fought, and I moved out and went back on Effexor so that last New Year's Eve, the eve of 2012, we walked home and got in bed too trashed to do anything, and a few minutes later I went to the toilet to puke so I could sleep.

That's the last I remember puking in that relationship.

That night, I shoved my tongue down his throat at midnight, which I think he liked, and then a little while later I recorded myself saying over and over to him after having taken a drag from a helium balloon, "I love you [Catfish Lastname] with all my heart."  I found the recording on my phone after we broke up.

I had been drunk enough in that moment to forget that I had recorded it.  But I do remember, or could later infer, that in all that repetition, I was trying to convince myself that he was my life mate, and I knew he wasn't.

I did that a lot.  For about eight months before I finally left him.  A period of my life I don't have words for yet.

This past month, I haven't been feeling it anymore.  You know -- little tugs of sadness, or sadness you trip into like a puddle, or regret, or missing.  It all tumbled away by itself.

I've also been eating a lot of crap.  And I've figured out how to deal with it.  I don't get nauseous on Wellbutrin, but I do get burpy.  So really what I need is to burp.  But I can't burp.  I'm a rat.  So I go to the toilet and I gag myself, and it overrides whatever keeps me from burping, and I burp in a giant way, and I've solved my problem.  No puking necessary.

So who wants to date me?

Wednesday, December 26, 2012

I have an appointment!

I have an appointment with Dr. Fred Howard at the University of Rochester!  My appointment is at the end of February, so I've got about two months to wait.  Which is actually earlier than I expected.  Yay!  (Especially after trying to finish their survey for two years.)

The first appointment will probably be just an hour long, so I'll drive 4 hours to Rochester, have the appointment, then drive back....I'm thinking of staying over and having a relaxing evening at a hotel.  Mmm, hotel bed.  If it snows, I can take the train!  Yay!!

If we move forward from there, I expect my next appointment will involve a trial nerve block to see if it helps my pain.  Rochester has a pamphlet describing it all (PDF).

I'm trying to remind myself that I can't assume this is the end of the road for my pelvic pain.  For one, I don't expect it ever to be cured at this point. But also, I don't know yet if a nerve block will help my pain.  If it does, I will do some kind of earth-thumping top-of-the-world dance regardless of how well it treats my pain.  Because if it helps, it means my pain is neurological.  And if it's neurological, it's not a mystery anymore.

Dear reader: don't despair that your pain might be around forever.  I remember the fear I felt when my vulvodynia started, specifically one night early on, before diagnosis, lying in bed thinking about vulvodynia and interstitial cystitis and how the two have no known cause or cure.  I was so afraid the pain would be around forever that I jumped out of my bed in a panic.  My body moved without me.  I don't know how I can reassure you if you're in such a panic.  But I can say that now, after six years, the thought of having pain for the rest of my life is not the same kind of scary.  And I am better at not thinking about it, which helps a lot.

Let me show you something that I hope will make you laugh.  It made me laugh/cry, which I think is better than not laughing at all.  It's part of the pelvic-pain questionnaire from Dr. Howard's office, this part asking about the words you might use to describe your pain and how serious you feel each type of pain is.


Throbbing shooting stabbing sharp cramping gnawing hot-burning aching heavy tender splitting tiring-exhausting sickening fearful punishing-cruel.....what words!!  It reminds me of Edgar Allan Poe's "The Pit and the Pendulum."

That X in the right margin is me marking the worst part of my pain on the previous page's diagram -- the URETHRA.  RIGHT HERE.

Here's a list of doctors who treat pudendal neuralgia, and a list of symptoms that might help you determine if it's worth it to get checked out for PN.

Thanks to a reader who has advised me on pudendal neuralgia!!

Saturday, December 22, 2012

White Christmas & writing a novel


December 2006, about two months after my vulvodynia started, I found myself trying not to tear up at "White Christmas" as I watched the orchestra rehearse for its holiday show.

I had been working for the orchestra for about 10 months at that point.  It hadn't been great.  Then my vulvodynia started.

One of my earliest panics about vulvodynia was that I felt like I couldn't sense things the same way anymore.  When I put on my headphones and shut my eyes, I didn't hear the music in the same way.  It's like my entire body had been a tuning fork, or a bell, or a guitar string, and vulvodynia was the finger stifling it.

It had been raining all fall, and I had come to associate rain with vulvodynia.  I had seen Guns N' Roses in concert just after Thanksgiving and screamed "November Rain" back at Axl as almost a plea to him, God Axl, or whatever god, to fix my pain.  By the time it started snowing, I thought, my vulvodynia would be gone.  It couldn't stick around that long.

Now, two weeks later, the weather too warm for snow, the orchestra, lit in blue, dipped into "White Christmas" and snowflakes twirled across the stage and onto the walls.  Perhaps for the first time, I noticed what a beautiful melody it is.  So I tried to listen.  And it was like I was listening through a wall.

It had come to seem impossible to do or feel anything with pure abandon.  But that hadn't always been true.

Since 2003, I had participated in National Novel Writing Month (NaNoWriMo), in which you try to write 50,000 words in November.  It doesn't matter how much it sucks.  Just write.  Because everyone says they're going to write a novel someday, but they don't.

November 5, 2006, about a month after my vulvodynia started and five days into NaNoWriMo, I finally put down the first words of my novel that year.

I was tired of holding my heart in.  First it was one temporary hand was all it took, a light touch every once in a while when it would pulse too big and press against my skin.  A light touch with spread fingers, hearing it thump, thump against the upper part of my palm, thump.  Two thumps, sometimes three, and it was back in retreat.

That novel became a vulvodynia narrative:

The necessity of holding it in didn’t grow by thump, now four thumps, now five, now sixteen – no, it was one day, I woke up, I sat up, my heart tilted forward and pulled at my neck skin, hard enough to make it feel sunburned, ready to snap like elastic.  I gasped and caught it with my palm and guided it back to its place, but to stand up, to move, to shower, I needed my hand there. ... Walk out the door, to work, to shop, to the newspaper, as if breathlessly in love with every sight (hand upon chest, gasping at beauty) (heart rattling under palm, no longer rigged).

I walked around every day with a hand to my chest, feeling my heart move in its soft, raisin way up against my layers of skin, nodding itself as I might bend to pick something up, the newspaper to read of crimes, or to pluck a leaf off my shoe. ... As I stretched and reached for things, as I answered the phone and threw scrap in the trash, I felt my heart topple softly, never eagerly but always pitched over square by one of my jostles, and then pitched back the other way by another.

And then, straight from my job at the orchestra:

My raisin heart, dried, sinuous, with many folds, thumping as it did, always a hair behind the metronome. A pit still shapely inside a hollowed fruit, rattling, sinews cut, pit rattling free but still inside the skin. I felt it thump, thump, its every thump, every, even at night, and my mind spoke alongside, thump, thump. It was a rhythm, thump, just a hair off the metronome, always behind, just a hair, so that I had to tap my foot to make sure it was off, and move my free hand through the four-four pattern to see just where the heart fell in its errant beat. My skin would itch to get it to land on the downbeat as it should. I would walk faster, I would breathe harder, I would worry, I would spook, I would hold my breath and jump and huff and puff. It remained always behind, and I knew its every beat, was that lagging rhythm’s captive, leaning forward into my walk as if advancing my body in time would bring the thump back in step, up to tempo, no longer almost jazzy in its lateness, but on time, a proper heart of strict, even rhythm.

When I look at these two events side by side -- starting a novel a month after my vulvodynia began, and tearing up at not being able to feel "White Christmas" in the same way I used to -- I realize that they are of two different outlooks on life.  In the concert hall, listening to the orchestra, I was a victim, and I had had something stolen from me.  Writing my novel, I was using the new world I was in to create something I never would have created otherwise.

I've been both people over and over since then.  I still feel robbed of my senses, and of everything else vulvodynia takes from you.  But I'm also trying to live in this new world.  It's still a world.

Wednesday, December 19, 2012

My car-vulva spiritual entrapment issue


I've posited before that the problems I have with my car and my toilet are metaphors for problems in my life.

Well, Hyundai is having problems figuring out what's going on with the brakes on my new-to-me-in-June car. So they've called in the Dr. House of Hyundai to take a look at it.

I would think by now that my car is a lemon.  So I have to remind myself of the backstory.  Here's the sequence of events with a lot of yadda-yaddaing.  See if you can spot all the metaphors:

1. I take the car to the dealer shortly after I buy it to get its little checkup. I tell them it's making a high-pitched cicada-like sound all the time except when the clutch is in.  They say the sound is typical for the model.

2. I return to the same dealer to get something replaced under warranty.  I ask them to take another listen to the cicada noise.  They tell me it's the clutch.  I wish I were living in a time of women fainting a lot.

3. I get the car back and notice that the odometer isn't changing.  But that makes sense because I'm driving down the expressway at 0mph.  I go back so they can plug the meters in.  On my way home, I notice that the radio isn't making any noise.  I drive around in silence.

4. I take the car back to the dealer because after a few weeks of driving the car, the clutch is squeaking whenever I push it in and out.  I ask them to plug the speakers back in too.  They call to say, essentially, they fucked up the first time and have to replace a bunch of other stuff on the clutch.  They tell me the stereo issue is a busted amplifier.  I can get a new one for $400.  I tell them no.

5. When I get the car back, they tell me the speakers came on all by themselves just before I arrived.  On my way home, I notice that the anti-lock brakes seem to be activating more easily than usual.  I think it's my imagination.  After a week or so, I admit that no, the anti-lock brakes shouldn't activate when I'm braking for a stoplight at 20mph.

6. I do nothing.  Then I take the car to another dealer.  They give me a loaner and keep mine for a week and a half before telling me they're calling in the Dr. House of Hyundai, who will be in on Wednesday, December 19, 2012 to take a look at my car.  (Today.)

7. I fill out a questionnaire to see Dr. Fred Howard in Rochester, NY, a pudendal-neuralgia specialist.  I MAIL THE QUESTIONNAIRE TODAY, WEDNESDAY, DECEMBER 19, 2012.

8. My toilet is fine.

I want to quip about the following: nerve entrapment and how it is maybe not like quantum entanglement but like it metaphorically which I could misuse to hypothesize that the soul of my car needs to be disentangled from the soul of my vulva so they both can get some peace plus a little about kismet, but I can't.  I wrote this last Friday and held off on posting it due to the Sandy Hook shooting.  I figure since Dr. House of Hyundai was supposed to evaluate my car today and I also sent off the questionnaire, I might as well put this post through and let my thoughts jell a little more before seeing if I want to write about Sandy Hook. ♥  All my love to the people of Newtown, and to everyone else in the world.

Wednesday, November 21, 2012

Was your cystoscopy painful?

I've read two different accounts in the Facebook vulvodynia groups of people having scary-painful cystoscopies.  My cystoscopy was scary-painful.  The doc gave me lidocaine (I think they actually squirt it up your urethra?!), which is apparently all that's necessary to eliminate any discomfort a normal person might have when a tube travels up her urethra and into her bladder.  For me, IT WAS DEMONS INVADING MY PEE HOLE.

I am so excited to find that other people have had awful experiences with cystoscopies.*  That experience has been haunting me, not just because of the horrible pain but because everything I've read makes cystoscopies sound like no big deal.  It also affirms my Vision of My Vulva: my urethra is the governing bitch.  She is the nexus of all of my pelvic nerves and she KNOWS IT.

If you have vag pain and you are going to have a cystoscopy, ask your doctor for a spinal anesthetic, not just a local anesthetic.  They DO do the spinal anesthetic, according to what I've read.  Or some doctors do it.  We can deduce a lot of bladder problems without a cystoscopy.  So a cystoscopy is NOT WORTH IT if you're going to go through the pain I went through.  It was terrifying.  I am not exaggerating.

My doctor was looking for signs of interstitial cystitis with my cystoscopy, which he did not find.  There was nothing else abnormal in that examination except for urethral polyps, which are apparently common.  I think they are demon eggs.

P.S. Again, if you want to join the Facebook groups, email me at madpeachblog, gmaildotcom.

P.P.S.  This doctor is on my list of doctors I want to punch.  And this experience is on the list of reasons I need to take up boxing.

*Haha, I just re-read this sentence.  It sounds sadistic.  Maybe it was my urethra talking.

UPDATE: Since I wrote this, I've heard from a few people who had painful cystoscopies.  Cystoscopies are not painful procedures for most people, but if you are planning to have one and you have pelvic-pain issues, ask your doctor for more than just a squirt of lidocaine up your urethra.  Yeesh!!!

VPants.com, pants for the va-jay-jay!

I just saw this link on Facebook to vpants.com, which sells pants designed for those with vulvodynia or chronic yeast problems.  Oh yay!  Oh yay!

Boot cut or skinny!

Okay, here, I don't know what the etiquette is exactly, but I'm putting their image of the crotch here, and I think it's okay because maybe they'll get a sale:



Yay!  This makes way more sense in general.  Wearing jeans with or without vulvodynia is like walking around with a knuckle shoved in your cooch.  Am I right?

If you want an invite to either of the vulvodynia Facebook groups, email me at madpeachblog at gmail and I'll invite you.  And maybe we can be fwends!

One of the Facebook groups is "Closed," meaning those not in it can see its members but not their posts; that one you can search for and join yourself ("Vulvodynia Support").  The other group is "Secret," totally hidden from everyone but its members; that one you need an invite to join.

Thanks to my Canadian friend who invited me!! :)

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?

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----

Ahhhhhhh!!!!!!

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..."

Thursday, November 15, 2012

Experiment wrap-up

Just a quick note to wrap up my "lie down a lot" experiment.

As I said in my last post, after a few days of lying down, my pain had receded to the point where I experienced Practically Painless Peeing!  It usually hurts every time I pee, the whole way through.  Practically Painless Peeing means that it hurt right at the start and then didn't.  Nice flowy careless urination.

The burning sensation also disappeared from my vulva.  Usually, I get burning from the perineum on up, especially south of the urethra.  But after some lying down, the burning was gone, and I was left with a different kind of pain just from the urethra on up.  The remaining pain was the first pain I had when this whole ordeal started (and that is with me every day) -- it feels like it's inside my body, right above that urethra-clitoris expanse (really, the bladder, but maybe more immediately inside).  I was still sensitive on the surface, but in a different way -- not that sparky acid/burning feeling.  And as usual, when my cat would walk on me and step on my bladder....ahhhh!  I've developed a habit of guarding my bladder when I see she's on her way.

I also should say that any stabbing pain was gone early on, before the burning left.  The burning and the stabbing (dear lord, this is not an episode of Criminal Minds!) seem to be dependent on contact, sitting, sex, exercising, all that "use" stuff, at least for me, so it makes sense that they fell off with limited movement and use.  The other pain?  No idea.  I think that pain gets better with a better diet, but it's been so long since I paid attention (or tried!)...I'll have to do another experiment!

As soon as I started moving around a little more and sitting (my patience for lying down crapped out, in part because my back and my bed weren't getting along), the pain crept back.  I spent the last day mostly sitting up and I did some chores around the house, but by the end of the day I was in vulvodynia meltdown.  I'd put vulvodynia away in its little box for a long time -- like, years -- not thinking about it any more than I had to.  Doing the experiment and paying attention to the pain and going through hope and letdown and plotting the next move -- it was like someone putting rocks on my chest as I floated on my back.  I didn't fall asleep until five the next morning.

The past couple days I guess I've been trying to recreate a feeling of control.  I can find a doctor, I can get treated, I can go back to eating better, I can lie down in the evening and on the weekends, etc., etc.  If I feel like I have some control, I can avoid meltdowns and take action.  I think the denial early in the illness -- it's going to go away! it's going to go away! -- was a way of preserving a feeling of control.  And it gave me so much motivation.  I'm way past denial now, so this time developing that feeling of control will require a more sophisticated approach.

One more note --- I didn't do any massaging or physical therapy while I was lying down because that would've tainted the results since I don't normally do it, but I did check in with my muscles..  They were not relaxed, which I was actually happy about.  The pain got better even though I wouldn't stop clenching my butt, which to me means it's probably not a muscles-only issue.  (I had a run-in with a doctor who told me it was all muscles...she pissed me off.  Take that!)

I think I clench my muscles to keep everything in place.  Movement hurts, and I developed the habit to cope with it.  So sometimes when I'm lying in bed, I guide myself to relax my pelvic muscles with a little trick I figured out, which I've named Poor Man's Biofeedback: I put my finger on my perineum and think, "relax here."  And my muscles drop.  If I'm touching that spot, I can tell what my muscles are doing, and my pelvis and my brain both know where to relax.  I do the same if I have a headache or a jaw ache: touch my finger to a point on my face or jaw and tell myself to relax at that point.

OK I proofread this and a lot of words were missing.  Like "cat," which is a pretty important word in that sentence.  So I hope it makes sense.  Nothing super-illuminating, but that reduced-pain pee???  There.  THERE is some motivation.  It is a reminder of what I felt like before the pain and a promise, almost, almost -- the universe promising that my sweet dear, you can be there again!

Monday, November 12, 2012

Mid-experiment update #2: Practically painless pee!

I have one more day left in my "lie down constantly" experiment.  I am tired of lying down.

However!  When I pee, it hardly hurts!  And this is amazing.  It hurts to start, and then the pee flows without any pained sensation.

When I was sick in 2009 and spent 10 days in bed (half of them because my voice hadn't come back), I had to stick to what was in my fridge, which happened to be mostly gluten-free bread.  I had looottss of toast for several days, and I think that contributed to my lessening pain.

This time, I've tried to eat pretty much like I would every day, in order to keep that variable constant, and as usual, I've seen some up & down that seems to be dependent on what I eat.

For example, I had some cereal yesterday (Honey Chex), and shortly after, my pain went through it's little leveling thing until I had burning where the burning had disappeared.  Screw you, sugar!

I think I'll leave this experience with more motivation to eat well, but we'll see if that actually happens.  I just hate choosing food.  If someone puts something in front of me, I'll eat it.  But choosing food means choosing whether to avoid things that I know might cause me pain and how to avoid them and what to eat to fill in the gaps, and that takes a LOT of willpower, and when you expend willpower, you want to eat SUGAR.

I more look forward to continuing my quest to find the right doctor and the right treatment.  My current thoughts:

Cleveland Clinic
I live in northeast Ohio, and the Cleveland Clinic surely has a fine neurology department.  But as we know, even in the right department, you might not find a doctor specialized enough to treat a relatively unknown condition like vulvodynia.

Cle Clinic has a pelvic-pain department, and as I've written, that guy told me my options were tricyclic antidepressants, lidocaine, botox, and surgery.  These are all viable suggestions to treat the pain, but they were his ONLY suggestions.  I was frustrated that there was no inquiry into what the root cause might be.  But my biggest objection was that he suggested a vestibulectomy even though my pain is not localized to the vestibule.  I wanted to kick him for that.

The Clinic has disappointed me overall.  I've visited practically every relevant department except neurology and there has been no coordination between departments, no formal diagnostic process, nothing.  Vulvodynia is a fall-through-the-cracks condition.

The Clinic makes the most sense since it's right here, so I will take a look at the neurology department.  However, I'm not going to do another uphill battle with them. If there's no sign that I'll get specialized treatment, I'll go elsewhere.

Summa Health in Akron
Dr. Lara Burrows, who studied under Dr. Andrew Goldstein, the godfather of vulvodynia, works out of Summa Health Systems in Akron, which is right next door to Cleveland.  Her specialties list vulvodynia.  Her papers deal with pelvic pain, but they don't directly study my version.  She has, however, studied belly-button pain as it relates to vulvodynia!!!!!!  Which I observed too, in a one-person study.

So she's on my list.  If I decide I want to see her, I'll ask about specifics first.  I get excited that she is so close, and then I freak out because of all of the stupid experiences I've had over the past six years.  I don't want to hear, again, that it's a mysterious condition and I have lame options.  I read a lot of blogs and there are plenty of treatments I've never been offered.  There are others I've asked for that have been pooh-poohed.  I think that's why I'm leaning towards seeing a neurologist.  Go in with a mystery condition, get a mystery treatment?  No thanks.

There are probably other options in the area, but I haven't looked into it in a while.  That's on the list.

Pudendal Neuralgia Specialist
Honestly, this is my dream.  And because I'm putting so much on it, it'll let me down.  Right?!

I don't know if I have pudendal neuralgia, but I have most of the symptoms.  In fact, it's the most accurate description of my pain that I've read.  For example, it includes pain during urination, which vulvodynia and pelvic-pain descriptions don't usually include.  Pain with urination is usually described as urine running over the vulva, not to urethral pain itself (pain from urine running over the vulva -- I am with you there too, ladies!  Insanity!).

Ooh, every time I read the symptoms of pudendal neuralgia I get excited!  So really, my instincts tell me to find a specialist who assesses and treats pudendal neuralgia.

Last I looked (which was a couple years ago), the specialists are scattered around the country, and there aren't any in the state of Ohio.  One of the closest ones is in Rochester, NY.  So, please let me know if you've worked with a specialist who has helped you, especially if it's someone who specializes in pudendal neuralgia or other forms of lady-bits neurology.  Even if they are prohibitively far from NE Ohio.  If I get a bunch of names between you guys and my own research, I'll put them in a blog post.

So that's my news today...tomorrow is my last lying-down day, and I don't know how much lying down I'll actually do.  My bed is not that comfortable, and my back is not too happy.  I also read really slowly.  It might be faster for me to listen to a book! LOL.

Saturday, November 10, 2012

Mid-experiment update

So it's the evening of day 2 of my "lie down constantly" experiment, my attempt to recreate the pain-free bliss I arrived at back in 2009 after spending a while out with a cold.

First time around, it took a few days for my pain to drop to its record-low level, so I've tried to be patient these first couple days as I wait to see what happens.  Yesterday, my pain went down and then back up, and I realized how much it could crush me if I can't recreate the results I had the first time around.  Putting all the pieces together, I've come to believe -- I NEED to believe -- that my vulvodynia is nerve pain and that all I have to do to get treated is find the right neurologist.  If my pain doesn't diminish significantly after five days of lying down...

Today, I woke up with sharp pain, but it has faded since.  At some point during the day, the burning stopped.  (Celebrate!)  Now what's left is a feeling of pressure, and the pain the pressure is causing.

I think the pressure might be from my gut, but I've also read that pressure can be a symptom of nerve problems down there.  I can't really tell what is what.  I'm just trying to make sure I poop in a timely fashion.

I was going to go into detail about the different kinds of pain that come along with my vulvodynia, but I had to stop.  Maybe I'll write that post someday.  Honestly, I'm having trouble writing this post.  Yes, this is an experiment, but I realized yesterday that really, I just want a break!  I just want a break from the pain!!!!!!!  A day!  An hour!!!!  It's UNBELIEVABLE to me that I've been in pain for six years!  All the time???  Really????  How does that even work?  Isn't it like a smell, where you don't smell it after a while?  Is there something wrong with my brain, my PERSONALITY that I can't let this pain go!?!!??!

I always end up blaming myself for it!!!!!!!!!

I feel so alone in it!!!!!!!!!!

I haven't been this "close" to my vulvodynia in a long time -- haven't spent this kind of energy thinking about it.  It is exhausting to think about!  I feel like I'll never be free!  This is why I shut it all down and packed it all away, why I stopped visiting doctors and caring about what I eat.  There's so much perfection in eating right and so much hope flushed right down the toilet over and over again in everything I've done trying to help myself.

Truth is, I know the next step is to see a neurologist.  I don't need to know what all the data looks like between now and Wednesday.  I know I'll feel better by then, even if not how much.  I just WANT to feel better!  I want that tiny little gasp of "this is what it's like"!  I had it before and I want it now!  I know it's there waiting!  I don't want to sit here pining for it but I am.

Sometimes the pain follows me around like a screech, even when I don't have it so bad.  At the mention of sex or when I'm about to cough, when I have to pee -- that FURTHER pain is right there.  I don't really believe I'll ever be without it.  But I know I can be!  There's got to be a treatment that will let me ALSO have a life...

I am angry beyond words.  At doctors, at a failed/nonexistent diagnostic process.  At the unfairness of it.

You know what the worst part is?  LIFE.  I feel like so much of my LIFE has been plowed under by vulvodynia. Sometimes it clicks in my head that I've had vulvodynia for six years and that means that my personality today is totally colored by it.  Oh, there's an Esther beneath, sure.  But these demons at my elbows -- who said they could stay?

Maybe someday I'll also write a post about the demons.

I don't know if I'm making sense.  I'm not going to edit this.  I'm actually doing fine, but I wanted to share these thoughts.  I'm trying not to think about all this.  I'm reading a lot.  A pair of Bones reruns comes on in a couple hours.  Best TV night of the week!

Tuesday, November 6, 2012

Substitute Candy


I'm not sure what this button is trying to say, but from a vulvodynia perspective, I think it's pretty funny.

"Orgasms hurt.  Have some candy instead."


Wednesday, October 17, 2012

No touchy the coochie! A vulvodynia-friendly wardrobe

For a long time, I was on the mostly skirts choo-choo train along with many other women with vulvodynia.  Skirts & underwearlessness are very popular in our little club.  But at some point in recent months, I reverted to a pants-based wardrobe.  My pain is there no matter what I wear, and pants are easy.

But winter is approaching, and for some reason, winter is skirt season for me.  I think it's the snow boots thing.  Loooove snow boots, and wearing them with pants is complicated.


(me in now-deceased snowboots -- i still mourn...)

I know I am in the minority on the skirts thing.  They aren't #1 in most people's closets, and when they're a bodily demand they can get even more annoying.

So I thought I'd share some non-skirty cooch-tender things to shake up our wardrobes...


This is the photo on Kandee Johnson's fashion & makeup blog that got me thinking about non-skirt things.  Her post: Skirts for Girls Who Hate Skirts.  Sound familiar?

I love the pink pants on the right.  If you do too, search for "genie pants."  I figured this out after much googling.


Or, search for "diaper pants," "harem pants," or "Aladdin pants," I learned from 1930byChrisJackson.  These particular pants?  Are amazing.




So super cute.  Alas!  These are no longer available.  But the site has plenty of other styles left.



This is the pattern the boys were wearing in middle school.  On similarly cut pants, come to think of it. (These were on eBay and are gone.  Sorry boys traveling forward from 1992.)



Or, like Kandee is wearing in the first pic way above, there's the high-low hemline skirt.  These are a little less skirty than your average skirt.  They flash me back to the 90s too.



Is this a Vulvodynia Trio?  Their style is definitely cooch-friendly.  (It says "baggy loose urban pants" here, but the link says "baggy crotch pants" ---- hehe...)



Perhaps the most practical solution: boyfriend pants.  Lora posted about these on her blog Servicing the Chassis years ago.  I never bought any, but I see they're still available at The Gap.

Notice that I did all this without referencing MC Hammer!!!  Who also provides a solution.

Here is a solution for the skirt lovers: Faux. Leather. Green. Skirt.

Thursday, October 11, 2012

My cooch experiment, pending

I have a standing desk at work. Actually it's a coffee table on top of my desk. In our small office of five, three of us have this setup. It works. You don't even notice you're standing. Walking away from your desk is weird...like swimming away from the edge of the pool. No getting up. Effortless.

Well it's getting colder and the office is too, and I've noticed that when I'm cold I shrink back and perch on my stool. Then I say, get up! But I get up and my butt is cold so I shrink back again. In the market for a snuggie.

So I've been sitting more and every time I get into a pattern of sitting, I get several Damn! moments where I remember that my pain has many more levels above my mostly-standing-or-lying baseline.

And it's so, so clear to me now, after six years of data and a dissertation of theories, that this is nerve pain.

So I am planning an experiment. When I lost my voice for 10 days in 2009, I couldn't go to work because I was a waitress. I was in bed the first few days because I felt sick, but I stayed in bed as I felt better -- with all that lying down, my pain had dropped considerably.

Need I say -- it was awesome.

Well obviously I knew what was up, but I had no insurance and I was probably way down on the notion of seeing more doctors. Plus, I still cycled through theories, knowing that there are other factors that influence my pain -- food, etc.

So my experiment is, the Fabulous: lying down for many days straight! I want to see if I get the same results. Ostensibly it's so I have reinforced data to present to the next specialist, but really? I need hope.

That's what I've been lacking this whole time. Visiting doctor after doctor, trying idea after idea, I got to the point of who cares. I learned to tune the pain out.

But I can still hear it. When I laugh, jump, cough, fart, ow. When I pee. When I shift around or walk. Even when my pain is low, it gnaws at me. Gnaws! Exactly! BAM verb.

It's like a rug burn on your cooch.

iPhone was quick to correct cooch to filch. Yes, iPhone, if filch were a noun, my cooch would be it.

I am excited. I am still undecided about when to schedule my experiment but it really doesn't matter. I'm just stalling. So I'll decide: my experiment will start November 9 and last at least five days. Bam vacation days. May they be the best ever spent.

(Must schedule around period. Also, must keep other variables constant, as much as possible. Ooh that will be a fun post to write.)

I hope you are all well. Vhugs!

Sunday, October 7, 2012

Happy Anniversary! Six Years of a Bellyaching Cooch

October 2, 2006, vulvodynia settled its mystery upon my loins.  My vulva really didn't like it and has been whining about it ever since.

Until [some future date], when [something awesome happened!] and I found myself with a born-again, carefree coochie.

True story!

I think it was four years ago that I started blogging, right around the time of my (our?) anniversary, and at the time another blogger had had vulvodynia for six years.  Six years! I thought.  That is insanity.  There is no way this is going to last SIX YEARS.

Those first few years, my vulvodynia was always going away.  Because of this new idea or doctor or treatment.  Or toilet paper or laundry detergent or herbal tea or diaper cream.

Or it would go away after I had learned this lesson.  No?  What about this lesson?  No?  What about this lesson??

Or it would go away by quiet absolution.  Because pain in that place?  Clearly I am a bad person.

At some point towards the end of year 3, the emotional strain came to a head.  I survived, and shortly after, I hunted down someone to have sex with.  "Just to see."  Then I started seeing Catfish.  Two and a half years later, I dropped him.  It wasn't working anymore.  But that relationship rescued me from my vulvodynia.

So, looking back, my advice to the newbies: seek a medical solution, but believe me when I say the pain isn't your #1 opponent.  The emotional toll is.  Maybe you can't have pain-free sex.  I can't.  It hurt every time I had sex with Catfish, and every time before him since October 2006.  If the pain is too much for you, don't have sex.

But don't let the pain keep you from being in a relationship.  You can seek every spiritual salvation out there. You can meditate and pray and worship the sun and visit the Loch Ness Monster.  But nothing, NOTHING can replace having meaningful relationships with other people.

Don't be a goddamn hero.

These days, well---

Once in a while my pain means
I'm ugly
I'm repulsive
I'll die lonely and childless.

Once in a while it means I'm too different to connect with other people.

Once in a while, I think about how it hurts every time I pee
and I feel like Medusa.

Once in a while
I can't handle this moment.

But almost all the time,
I'm going to find something that helps.
I'm going to find a doctor who knows what's wrong.
That doctor will be able to treat me.
Maybe there's no treatment that will cure me, but there's something that will help.
I will have pain-free hours
days
maybe weeks & months
And I do believe that my pain CAN go away,
that it's possible.
But even if it sticks around until I die,
I am so much more amazing than I ever would have been without my pain.
I am better and better
and better!
and better!
and after a time away,
I have a self to give to other people now
and she is better
and better
and better.

Tuesday, August 21, 2012

Skinny? Try the Wate-On Solution!



I WOULD like a super-condensed food tablet...food of the future!

Here is Scarlett fretting over her 20-inch waist


So of course I got out my own tape measure. My waist is normal for me (add several inches to 20) but my butt is down 1.5" from my normal. Not my butt! Precious, precious butt!!!

Well that frustrates me...but I'll think about it tomorrow. And from now on, to anyone who comments on my weight, I'm half Kenyan Marathoner.

P.S. I put those two weight-related posts back up, the ones I mentioned I had taken down. They may be crabby but a number of you have written that you have the exact same issue, so I figure I might as well leave then up for camaraderie.

P.P.S. Oh Scarlett, will you stop obsessing about Ashley already! You don't love him! You only want him because you can't get him and your whole goddamn life revolves around being able to manipulate people and when you find that you can't manipulate someone you obsess over him. That's why you're going back to Tara -- to find a way to win Rhett back even though you'll be like a well- fed cat with a lame mouse when you do, swatting at him half-heartedly, bored. I hate you because I'm afraid I'm like you, out of touch with happiness.

I think I am developing a complex about my weight

I have written a lot about my weight lately. And then I took down the two most recent posts about my weight because they seemed too negative.

But after everyone and my psychiatrist telling me I am sooo skinny, I have become obsessed with whether I'm too thin.

My friends posted a few group photos on Facebook recently, and I look at them and think, yeah, that's a twig. Of course, it doesn't help that you're standing next to the pregnant girl, but look: there's no evidence of boobs. Your arms are freakish. You look sickly. Do you have any shape at all? And you're so pale. Look at your calves! And then I start measuring everyone else's calves against mine...

THIS IS WHY IT'S NOT OKAY TO REMARK ON SOMEONE'S WEIGHT even if you're telling her she's skinny and you think it's okay to say so because society prizes skinny even though you don't want to admit it.

Because I NEVER had body-image problems before the barrage of skinny comments I got over the past year and a half. I lost weight due to stress and heard about it left and right -- and then I regained it, but ever since then I've been worrying -- did I gain enough back? People are still saying I'm skinny -- do I look gross? Am I unattractive?

I've been skinny all my life but I always loved what I had. Small boobs were "portable," and I loved my butt. I still love looking at my hourglass shadow. So I think I still love my body in that way, but now I'm overly aware of what it might look like from the outside.

And I worry about eating enough. Horrible problem! people say, not being able to eat enough. Another double-standard comment -- if I were an overeater, you wouldn't taunt me about it to my face.

I feel obligated to cram crap in. One of the posts I took down was about how I downloaded a calorie-counting app and set a goal to gain, I don't know, 10 pounds, but I ended up deleting the app because my body simply doesn't want to eat that volume of food every day. It was a chore.

If I could cram in milkshakes and still feel good, I would do it, but sugar is one of my main pain triggers. Of all the things in my life that revolve around my vag, food is probably #1.

I'm not concerned about my health. Esther strong. But those pictures will follow me around for a while. And I'll probably start designing ways to shovel it in again. I need some Weight Gain 4000. (South Park reference. I'm the one who's gonna be on TV, looking all buff.)

Thursday, August 2, 2012

You think you can get away with it

Green tea is a big no-no for interstitial cystitis.

I don't care about diets anymore. After years of chasing the perfect diet, it became too frustrating emotionally. So I eat things that are on the no-no lists.



NOOOOOOO!!!!!!!!!!!!

You CAN'T get away with it!

Coochie BOMMMMMMB.

I'm hoping experiences like this will guide my future doctor-slash-savior whom I will find one day, oh yes I will, and get some help that helps.

*I originally wrote that green tea is also a no-no for the low-oxalate diet.  In fact, it's a yes-yes.  A yes-yes-yes, like safe.  Black tea is a no-no.

I don't know about WHITE tea.  All these COLORED TEAS.  Now I found another website that says all colored teas are moderate oxalate (PDF).  This is why I gave up on the low-oxalate diet.

Sunday, June 24, 2012

Guest Post: Vestibular Vulvodynia - K's Story

FINALLY I am posting this reader's story.  It was breakup-delayed...

Yay for K sharing her story!  Her experience sounds similar to mine and to stories I have read elsewhere -- antibiotics kicking off pain, multiple yeast treatments, painful sex and urination -- and ultimately, she has returned to having a sex life (woo!) and found great relief from going off birth control.

I LOVE sharing these stories.  I think it is so important for us to know what others are going through.  If you want to share your story, email me at madpeachblog AT gmail.  There are a couple of Facebook groups that are also a great resource -- if you're interested, email me and I'll hook you up.


Vestibular Vulvodynia - K's Story

It was Thanksgiving week of 2009 when I had to go to the ER for a
very bad UTI. I was urinating blood clots and in awful pain. I got 
a 5 day treatment of Penicillin and the subsequent yeast infection 
that followed antibiotics. I treated it with a 7 day kit. 

I was sore after my UTI but didn't think anything about it. It felt like I 
was urinating needles every time I went to the bathroom. December 21 
came and I went to a quick visit from a local doctor who gave me another 
antibiotic prescription for what she thought was a UTI and I took a urine test. 
I started the antibiotics immediately for relief though I didn't register any 
infection I found out the next day. The nurse chewed my ear off for taking 
the pills before I found out, but I was desperate for relief. 

I got pneumonia in January 2010 and was given steroids to calm my 
lungs since I have asthma. I didn't know steroids could give a yeast infection 
but I had such a severe one my vulva swelled shut and became twice it's 
normal size. I got really strong yeast treatment suppositories that 
gave me vaginal chemical burns.
Sex has always been painful for me, even before vulvodynia. I never could wear tampons. It was always just alittle though and after a couple minutes (stretching I suppose) the pain would go away. In February 2010 I tried to have intercourse but I just cried and cried, any thrusting felt like I had been getting paper cuts on my vagina. 

I started to develop itching, just severe itching that nothing would calm it down. Panties started to hurt and felt like pressure on my vulva. I couldn't wear pants anymore either and when my monthly would come, I'd just bleed into underwear since pads were too painful to wear. I had trouble sitting as well so I'd spend most of my time laying down in bed on the laptop, until even laying down caused my vulva to hurt. I started to get pelvic pressure 
around this time as well.

In April 2010 my parents sent me a cushion, and it did help. I was able to sit better but how embarrassing to be 26 years old hauling a cushion with you everywhere. I was irritable most of the time and sex was out of the question. I did anything and everything to avoid any sexual situations with my husband. Masturbation wasn't even possible. Around 
this time I developed clitoris cramps and clitodynia.

I had been on birth control pills the whole time. I was on the same brand and amount for 6 years by this point, so I never thought the pills had anything to do with it. My sister advised me to get off the birth control pills to see if my symptoms got better but I was hesitant and afraid of pregnancy (which was ridiculous, I couldn't have sex!) 

By May 2010 I couldn't take it anymore. We saw our local doctor who referred us to the local sexologist. The nurse on the phone swore I had another UTI which I knew I didn't since I had one previously. I still had to take a urine test and they were amazed no infection was present. I had to wait a month for the sexologist and it was the longest month of my life. 

June 2010 came and I saw the sexologist. She asked a series of questions and I asked if I should get off birth control pills. She said no, they don't think the pills cause vuvlodynia. Then the examination happened. She pressed a q-tip on the left side of my vagina and the expletives that came out of me were something. She diagnosed right there I had vestibular vulvodynia and it was one of the worst cases she had seen. I was given gabapentin cream that had to be specially made and our local pharmacy had NO clue how to. We had to drive 45 minutes one way to a bigger city each time to drop off and pick up 
my prescription. 

The cream worked alright, it took down the inflammation and calmed the itching. It numbed everything though so when I'd achieve orgasm it felt like it was happening through a really thick towel. I went through tubes and tubes of the cream, probably 6 or 7 in the end of treatment.

Every month I'd see the sexologist (We use public health system) and she'd press me did I have sex. I'd say no and she would get miffed I didn't try. The cream didn't work that fast! Soon I was able to start wearing loose pants and that was great! I was still taking birth control pills through all this. 

I still had extreme itching, clit pain, and if I ate certain things it hurt to pee. I still had great pressure in my pelvis, like a 100 pound weight pointed upside down in my pelvis. I learned about the IC (insitital cystitis) diet and it did help stop the painful urination. I went month after month, more cream. I did have intercourse but I was so numb from the cream it was pointless! 

September 2010 was my last visit. The doctor said I was cured! Sure didn't feel 
like it! I had such a mental block against sex that it didn't happen but once 
in the coming months. Sex equaled pain in my book, and who wants to put 
themselves into agony? I was worried the vulvodynia would come back if 
intercourse happened and I worried about another UTI and yeast infection. 
Recovery was stagnant the next half a year and I still had pain to a degree, 
usually the worst flares happened right before my period. I just kept 
avoiding trigger foods for me (MSG and citrus fruits) and slowly tried to 
get comfortable with sex and the idea of it. 

March 2011 I ended birth control pills. Within weeks I noticed a reduction 
of pelvic pressure and pain! I was lubricating naturally like I hadn't done for 
YEARS. I had a sex drive again and felt the most sane I've felt in years. I wish 
I had heeded my sister's advice and kicked the pill right when the pain and itching started. 

Funny enough , I checked our country's national health page about vulvodynia 
and they suggested getting off birth control first thing! I wish I had read that page 
and taken it's advice. Doctors don't know everything! 

It's April 2012 and I still have Vulvodynia and Clitodynia. The pain is less but it's still there. The pressure comes with a flare and if I eat things that trigger me to swell, but I've learned to take a Tums or other chewable calcium supplement if my bladder hurts. It really helps calm the stabbing pains. 

Sex is happening which is good! It's not at the same pre-Vulvodynia rate of 3-4 times a week but any action is good. I still struggle with my mental block against sex and it can take a long time for me to feel aroused, but there's progress. I think therapy would of been good but there's no therapy that's affordable here outside public and the waiting list is half a year. 
Considering that, I think my husband and I are doing best we can on our own..figuring along the way. Communication has been so important, and I'm lucky to have a husband that listens and wasn't pressuring me for sex when I had the awful pain in 2010. 

I did get a yeast infection last July and no vulvodynia pain spike. I treated it with 
yogurt and I healed fine. I'm weary of chemical yeast infection treatments still though. 
My main symptom now is painful and itchy clitoris. I get awoken to having my lady bean itch like it's on fire! I learned that zinc oxide is fantastic for vulva/clit itching so I just smother it on and it really does help. I own a ton of tubes of diaper rash cream! 

Looking back, the best move was to get off hormonal birth control. I think the cream helped heal the irritation but it numbed me so that's a give and take right there. I do believe I was predisposed to this happening since I have Fibromyalgia. My sister was never diagnosed 
with vulvodynia but she had the exact same symptoms as I did for a year until she ended hormonal birth control. 

There is hope and I hope this letter helps someone. Vulva health is nothing to be ashamed about and should be spoken of more openly. I delayed 7 months going to the doctor and I wish I hadn't! Read on vulvodynia and get all the info you can, it really does help!

Saturday, June 2, 2012

I Can't Eat Any More

I downloaded the Livestrong calorie-counter app to my phone and set a goal of 2,575 calories per day, as recommended by the app based on my weight-gain goals.  (I'm 5-10 pounds lighter than my normal weight.)

I surpassed my goal once.  Most of the time I landed between 1500 and 2000 calories, even when I crammed in a bunch of random crap.

 I decided two things:

1. My body doesn't want to eat 2,575 calories a day.

2. I don't like eating random crap.

I think our bodies direct us to eat what we need to eat.  Bad habits direct us too, of course, and then we download calorie-counter apps.  But aside from eating too little when I'm stressed, I don't have bad eating habits, and I don't need a calorie-counter app.

Back to following my gut.

Friday, May 18, 2012

Denial? Surprise!

I think they should rename the "Denial" stage of grief as "Surprise!"  As in:

"What do you mean my parakeet died last week and I put it in a kleenex box along with some food and its favorite toys and buried it in the backyard?"

OR

"What do you mean I broke up with my boyfriend of 2.25 years after three months of agonizing over the fact that I knew we had to break up?"

Because it comes back at you like a slap.  What?  REALLY?!  As if you never knew it before.  That rush of breath out of you.  My parakeet's GONE?!?!?

But by now I am better.  Like I said, three months of agonizing over it.  That got me quite a ways down the recovery road though it was sobby-soggy-sorry mess inside it.

Here is some more evidence of my progress:

1. I have been rotating through former loves and lusts in my dreams.  Re-dating, re-romancing, re-admiring.  RE-ADMIRING.

2. I woke up two days ago dancing and singing after a dream that I probably can't explain but that was basically like passing through a gateway.

3. In a further feat of you're-too-skinny heroism, I dismantled the GIGANTIC wardrobe that came with my apartment that was crowding my bedroom and put it in the basement.  Particle board.  IT WAS HEAVY.  I AM BAD ASS.  And the whole time I was saying to myself, "I'm just going to get this GIGANTIC THING out of my LIFE and COPE WITH IT LATER."  So much of what we do is a symbol for something we feel.

THE GIGANTIC THING I JUST GOT OUT OF MY LIFE WHOSE REMOVAL I WILL COPE WITH LATER

4. I just listened to "I Will Always Love You" on the radio and teared up in admiration of Whitney's beautiful voice.  That's right.  Just Whitney.  This time, anyway.

(I don't have a parakeet.  Anymore.  No really, I don't have a parakeet.  Anymore.)

Thursday, May 3, 2012

Dear Person Who's Talking to Me About My Weight

If I were fat, would you tell me how fat I am?  I hope not.  So why are you telling me I'm skinny?

Do you see the double standard?  You're participating in it.  It's unfortunate that our society prizes skinny. Does that mean we have to protect fat people's feelings but skinny people are open for judgment?

What if I have an eating disorder?  What if I have a medical condition that causes me to lose weight?  You have no idea what's going on behind the scenes, and you could be causing me serious emotional injury with a comment you seem to think is innocent.

I have been roughly the same weight since college.  Have you?  I can hop on the elliptical at any point in my life regardless of how long I've been away and do 30 minutes.  Can you?  I can carry a 1960s TV cabinet that houses a 20" CRT TV, a DVD player, and a VCR down a flight a stairs without any help.  Can you?  I challenge you to find someone who doesn't work out who's in the shape I'm in.

My blood pressure is normal.  My appetite is the same as it's always been.  I am not anemic.  I am not malnourished.  I can drop and give you 20.  My BMI is normal.  Is yours?  Yes, I lose my appetite when I get stressed.  When you start stress eating, do I tell you how fat you're getting?

From a skinny person to a fatter person -- next time, think before you speak.

Peace.

P.S. Don't be jealous.  You look good too.

*

This was so much more eloquent when I was lying in bed not falling asleep because I was arguing with stupid people in my head.

When it's perfect, I'm printing it out and taking it to my next appointment with my psychiatrist.  Of all the people...

This is a version of "all shapes are beautiful."  So if you are not comment-invoking skinny, just remember that you are beautiful.  All shapes are.  And if you are skinny, remember that "real women have curves" is ignorant crap.

My BMI is not normal right now.  I have been stress-not-eating.  But it is usually normal, and I am chunking it in.

God dammit.  The birds are up.

P.S.  I have no idea what decade the TV cabinet came from.  But it was deep and belly-button height and awkward.  I freecycled it and the woman who was picking it up had to return with help to load it into her minivan.  She had 3 stairs to descend, which I ascended to leave it for her.  It's unfortunate that Wonder Woman wasn't home to help her out.

P.P.S.  I should work out anyway.  Or dance if I could fall asleep and not argue with people in my head even after taking Benadryl and Ativan and gluten-free beer (not in that order) and then wake up to dance.  Cardiovascular goodness.

P.P.P.S. I thought I was anemic recently.  My bloodwork said I was on the low side but not over the line.  I took iron.  And then I figured out that I was taking Ativan every day and that's why I was sleeping so much.

P.P.P.P.S. Ativan is an anti-anxiety drug that zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Saturday, April 28, 2012

Abstinence

I finally broke it off with Catfish.

The first thing I did was count all the people I consider to be in my "top friend level" -- 18.  Eighteen!  People whose hearts I carry around with me, whose hearts I know carry mine (to paraphrase e.e. cummings).  People I'm actually somehow regularly in touch with.

Of course, 99% of them don't live in the Cleveland area (this is an estimate), but right now that doesn't matter.  I reached out to many of them and receiving even a few simple words back makes me soar.

I am so lucky.  And my family.  Even my extended family.  My mom and my aunts and my grandmas and my cousins make it impossible for me to feel alone.  Sisterhood!

When I was talking about the inevitable breakup with one of my grandmas, she told me many wise things, one of which echos in my mind: "It will be good."

It will be.

He would've stayed in our relationship as it was indefinitely.  I got too stressed by it.  I have never felt so loved, so I don't understand how he could let me go.  I think a lot of it is his money and not feeling able to support me, and some of it is his having been burned by divorce.

It all started with a house.  A regular at the restaurant offered to rent me a house for super-cheap while he went to Florida for a few months and then returned to finish renovating it.  I told Catfish, and no, he didn't say "no" like I felt he did.  But he said too many doubtful things and I dropped the issue.  I spent a month in sickening anxiety before I figured out I was anxious because I knew we had gone as far as we were going to get, at least in the foreseeable future.

A few nights after the breakup he called me to tell me his sister returned from Cancun with meningitis.  She is out of the woods, but they almost lost her.  I texted him afterwards to tell him that just the way we talked, I know I have a friend for life in him.  He texted back, "Til death do us part."

Screw you Catfish for the phrasing, but I believe it.

I know it's for the best.  I was too stressed out to love-him love him anymore.  Now I feel like I can love him better.  "Higher than soul can hope or mind can hide," to quote e.e. cummings.

Then I went to Planned Parenthood to get a pap and a clean STD bill.  I got checked for STDs long ago inside our relationship and I know I'm clean.  Catfish is one of the most loyal people I know.  But I need to know my status for sure so I can eventually move on.

I also got an HIV test.  I mention this because I know they are hard to get.  People should get them anyway.  It takes 20 minutes.  I got one because HIV is one of my mind's favorite health anxieties and getting tested is the only way to shut it up.  And my mind chooses health anxiety above all other anxieties, even during a breakup.  It's concrete.  Breakup is pudding splattered on the kitchen floor.

And the nurse gave me my form to take to the desk and my method of birth control was "Abstinence."

Screw you nurse.

"It will be good."

Friday, April 20, 2012

A Vulva Update

Hello!  I haven't posted since February.  Here is my update.

I've started working part-time for the company my dad works for.  It involves sitting.  So far it is okay.  Long days aren't great but it varies depending on other circumstances.  I've tried a kneeling chair and I think it helps some.  Puts more weight directly on my hips.

I got to visit the steel plant as part of my company introduction.  It was so cool.  I got to watch them burn through the steel with giant torches and make perfect rings.  It's my new dream job.

I am still waiting tables.  It's a good job for the vulva, but I'm tired of talking to so many people all the time.  I wish we could do charades.

I'm trying to gain weight.  I don't eat when stressed anyhow, and I'm apparently always stressed.  Add to it Wellbutrin, which suppresses appetite, and I am too thin.  I'm not really aware of it until I step on the scale, which I don't have at home.  For a while I accuse the scales of needing calibration.  Then I put a 20 lbs weight on the scale at the gym and curse.  I'm truly not aware of losing weight.  My pants seem to fit the same.

Oh yeah.  I'm wearing pants, and it's okay most of the time.  I don't feel like talking about the pain right now, though.

Did you know a regular-size banana milkshake from Steak N Shake is 700 calories?  My psychiatrist says "drink milkshakes."  I say if they did to his body what they do to mine, he wouldn't think of it.  But I am drinking them anyway.  I am packing it in.  It is a short sacrifice.  After only a couple days I am thicker.

Which brings me to...I found a probiotic that kills my yeast cycle.  It's Saccharomyces boulardii, specifically by Jarrow Formulas.  I tried Florastor, which contains the same probiotic yeast only marketed with an air of exclusivity, but I didn't see much improvement.  After only a couple days on the Jarrow version, the evil yeast surrender to the good.  I will probably write a post about this later as I think it's an important development.

Catfish and I are hanging on by a thread.  I honestly don't know how (and maybe even why) we're still together.  Maybe we are deluded.  Maybe we like each other.  I can't tell anymore.  When things are good we see each other 3-4 times a week.  When things are bad we might spend a week apart, mad and doubtful.  This is not good for a couple who live 15 minutes away from each other.

Living away from each other after two years, it's old.  I am over it.  That's the main issue.  He says we have the kind of future I want, the kind where you actually build a life together, but I think that's what he wants in theory.  I think in reality he needs six years to get there, to get his head and his money straight, and I am exhausted.  I feel like I have no control over my life.

It doesn't help that my ovaries are at the wheel.  Dear lord.  I'm 32 and my mind sounds like this:
If you want to have babies when you’re thirty, then you probably want to be married when you’re twenty-eight. This is good news because if you marry very young you’re more likely to get divorced, but the statistics get much better if you wait until you’re twenty-five. For a healthy marriage, experts think people should be married two or three years before they consider having children. A reasonable expectation is to meet someone, date for a couple of years, and get engaged with almost a year’s time to pull off a wedding. So you need to meet the person at age twenty-four.
I never thought I would feel this way.

But here I am.  I know that if I had anything meaningful in my life, my relationship wouldn't be quite the issue it is.  It wouldn't take over.  But I can never relax.  I am endlessly anxious.  I have been since I was a baby.  It's hardwired.  It gives me a great memory, and I'm a good speller.

I have another reader story to post, but I will save that for this weekend.  My apologies to the wonderful woman who was willing to share her story.  I have been having computer and internet issues, and my little iPhone screen already feels antiquated!