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!!!, pants for the va-jay-jay!

I just saw this link on Facebook to, 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?


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..."

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."