Friday, May 31, 2013

The Post about Interstitial Cystitis

It's been a little over a week since my last nerve block.  I haven't seen improvement.  I'll think I have, like I'll pee and it'll be whooshier, or I'll pee and it'll be less painful.  So maybe there's improvement.  But it needs to be consistent.  Aberrations have happened throughout my time with vulvodynia.  Sometimes my pee is randomly whooshier.

So what I'm thinking is this.  I think I probably have some entrapment in the pudendal nerve.  I have some classic signs, the most important being increased pain with sitting and decreased pain with lying down.  I have to lie down a long time to see significant improvement -- and when I do it multiple days in a row, I feel miles better -- but it does work.

However.  I am way too sensitive to food to be a pure pudendal-neuralgia case.  In 2009ish, I deduced a diet that made my pain much better.  I stayed on that diet for a while, but I lost hope as I visited doctors and repeatedly got turned away with no diagnosis.  Specifically, I saw two urologists who told me I didn't have interstitial cystitis.  The second sent me away telling me I had pelvic-floor dysfunction.  She said it was psychological, that I was traumatized by a UTI I had when I was 2.

I want to go back in time and kick her in her face.

After 3 years of vulvodynia, of course my muscles would've been screwed up.  I had been trying to hold my bladder in place to reduce my pain FOR 3 YEARS.  I was so relieved when Dr. Westesson nodded in agreement when I told him my hypothesis about my muscles.

Seriously, woman.  You made me feel like a fucking idiot.  AND YOU COMMITTED the cardinal sin of ACCUSING PELVIC PAIN OF BEING PSYCHOLOGICAL.  I read about this all the time on the Facebook support groups... we all hear it... as I wrote long ago here on the blog, if it were back pain, would you accuse me of having moral issues?  No upstanding character?  No.  So why does pelvic pain have to be due to sexual issues??

Oh. My. God.  I can't express how mad that makes me.

When I get diagnosed with interstitial cystitis, dear sucky urologist, I'll write you a letter telling you off.

When: my sensitivity to food being SO obvious and there being NO other pelvic-pain condition I've read about in my 6.5 years of reading that is so sensitive to food -- and now, after these nerve blocks aren't working -- I am convinced I have interstitial cystitis.

Not that the nerve blocks are the wrong thing to do.  Like I said, I think I probably have some nerve entrapment -- I think my muscles might be pressuring it, which both doctors have said is possible.  Dr. W took pleasure in describing to me the massive butt muscles athletes get which can subsequently entrap their butt nerves.

And the way my pain started -- with pain ONLY in the urethra-bladder area.  None in the vestibule, not this burning that I get when I sit.  I guess the pain could've grown over time from a single source, but... I had 2 UTIs in the six months before my pain started, if I take UTI antibiotics the pain is so bad I want to die, and food, food, food.  As far as I know, pudendal neuralgia doesn't respond to food.

PN responds, for example, to constipation.  If you're backed up, your nerve has more pressure on it.  But my response to food -- if I eat sugar, I don't even want to touch myself down there to wash.

And actually, sugar is not sworn off on the IC Diet List.  Which is interesting.  Which makes me think further that my pain is related to my IBS, which was explosively bad for several years -- in college, of course, in the dorms, when I would eat a single Tootsie Roll and have to run to the john and hope everyone on that end of the building was at class.

But just because I respond badly to sugar doesn't mean I don't have IC.  Obviously.

When I go back to Rochester in a couple weeks to see Dr. Howard, well, I don't know what he will say or do.  But I do think I should see the urologist there who specializes in IC and get (ugh, I don't even want to consider it) a cystoscopy under anesthesia.  Apparently the bladder inflates more under anesthesia than not, so any ulcers are more obvious.  Also, the doc might actually think I have IC, and there are meds specifically for it that I haven't been on.

I think back on the doctor who did my cystoscopy, my urethra-demon-invoking cystoscopy, the first urologist, and I will also write him a letter giving him some shit.  Both of them were just awful, awful practitioners.

Anyway... my cat woke me up at 4 this morning and I haven't been able to get back to sleep.  I am pretty pissed off about things.  Not her.  The things above.  I wish I were the Hulk... smash...

I feel like when you have a physical injury like I believe vulvodynia to be, and also when you have a mental injury like depression or anxiety, you need to fucking take a break.  A fucking sabbatical.  That is why NO ONE RECOVERS.  It's because we keep going with our lives, which re-injure us.  I can't lie down forever, but every time I sit, I re-injure myself.  I can't avoid all stress, but when I get stressed, I re-injure myself.  I don't eat well because I don't have the energy (or frankly the goddamn money) to spend on it.  In regular life, we can't get away from these things.  But a year off?  I think a lot of us would be cured.

At least of curable things.  Which I believe vulvodynia to be.

I want a year off.  I wouldn't lie in bed.  I'd work on a farm or in a plant nursery.  I'd watch things grow and that's all I'd worry about.  I'd eat well.  I'd get rid of all the things I own save a few most precious.  I'd take my cat with me and I'd sing hush my darling, don't fear my darling, the lion sleeps... until 4am.


  1. Hello dear Esther,

    Thanks for your comments on the psych thing. It's exhausting isn't it? The pain 'down there' comes from 'up there'. Yes, really convincing. I'm curious about food too, I'll stay tuned to see what else you write about that. But I wanted to ask, do you lie on your back or front? I can't lie on my back at all. The fire begins straight away.

    1. Lying on my side is the worst for me when I'm flaring. My back is fine, my front is usually fine but sometimes I feel some pressure in the bladder area. Any compression between my legs seems to aggravate my pain... walking, etc.

      It's got to be a pain not to be able to lie on your back! I hope you can lie on your side and don't have to spend all your time on your stomach -- I love lying on my stomach, but only for a limited time :)

  2. Hi Esther, I too believe I have IC, but have not been diagnosed. In addition, I believe my IC reacts with my IBS, another medical issue in which I have not been formally, "medically" diagnosed. I currently don't have health insurance, so it would be impossible to get the diagnosis anyways… But anyways, I just want to touch base. I've been researching all sorts of ways to help my IC/IBS issues. I am currently going through a huge flare. Marshmallow root supplements help me a lot. I've been reading up on magnesium (oil or supplement), some ICer's saying it's been a "cure." Have you heard anything about that? Same with sea buckthorn… are you gluten-free? I tried to go gluten-free for a while and I did not notice a huge improvement in my IC/IBS.