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.

Sunday, May 26, 2013

Ischial nerve block #2, collapse of "personhood"

This time around visiting Dr. Westesson for a nerve block -- the fourth nerve block overall -- he decided to try a block about 1/3rd of the way down from the ischial-spine site towards the Alcock's canal.  Again, the test for likelihood that entrapment is at a particular site is whether the anesthetic injected along with the steroid relieves the overall pain.  The first block -- at the ischial spine -- relieved about 90% of the pain.  The remaining pain seemed to come and go as my bladder filled and emptied, which may suggest interstitial cystitis.

The first block at the Alcock's canal missed the nerve -- I felt no numbing in the area at all after the block.  The second one hit the nerve and numbed the area, but the anesthetic didn't take away the pain.  That suggests that the entrapment is not at the Alcock's site.

This block, about 1/3rd the way down from the ischial spine, numbed the area and, like the first block, took away most of the pain.  That's a good sign.  The entrapment might be in that area after all.

I mentioned to Dr. W that a couple weeks after the first block, I peed 5-6 times in a row across 2 days with very little pain.  The only other time I've had that kind of relief from pain during urination is when I've spent several consecutive days lying in bed.  But the relief didn't last, perhaps because my period kicked in right then and returned me to the status quo.

OK, this blog post is already disorganized, and it will be further, and it will probably be long.  But I've learned that the more information I provide, the more help I am to those who are going through this.  I hope all this helps and isn't too confusing.

The second period I got over the course of these nerve blocks lasted 2+ weeks.  I stopped counting.  Dr. W confirmed at this past visit that steroid injections can affect menstrual cycles, and there can be other side effects such as jitteriness and some other things I don't recall.  He says he used to tell everyone about the side effects, but he doesn't these days because hardly anyone experiences them.  Anyway, if you get steroid injections and weird things happen to you, don't fret (like I do as a paranoid 33-year-old) that you are entering early menopause.

During that 2+ weeks of period, I missed my ex-boyfriend SO MUCH.  It was unbearable.  In hindsight I realize the hormones were taking over, but also, the pain was so much worse from that second Alcock's nerve block that I just wanted COMFORT.  I just wanted someone to BE THERE to HOLD ME.  I tell you, being single is so much harder for me these days than it used to be.  I feel very alone.

The pain, thankfully, has backed off to normal levels.  I can sit without the spider of "exquisite pain" descending on me within minutes, and my bladder doesn't feel like it's filling with fire ants.  When Dr. W was doing the nerve block this time, I could feel the pain traveling up the nerve towards my vajayjay, but not like last time when it was a razor cutting its way.

And as soon as my period stopped, my thoughts about my ex-boyfriend vanished.  It's so funny how hormones and other chemicals can make thoughts seem so real.  So if that happens again, I'll know what's really going on.

OK and speaking of, I saw my psychiatrist yesterday, and he says I am at my "darkest."  He says I lack "personhood."  Then there is all this other stuff he said about how if you don't have things you do just for you, for enjoyment, if you don't engage with the world, you don't have a self.

I explained to him that I don't even want to enjoy anything because I'm so afraid it will be taken away from me, and he said of course -- you have a moment of happiness and the pain swoops in and takes it away.  Is this true?  Is this the cycle?  And also, I say, the cycle of happiness inevitably overcome by depression or anxiety, I don't trust anything anymore.  How do I get out of this trap?

It has taken me everything to do the smallest things lately.  A family gathering last weekend, I started getting ready 2 hours ahead of time, rocking back and forth from "I can't go" to "I want to go" and crying, anxiety attack, why is it so hard?  Today I did the same piece by piece putting myself together to take a walk, I made myself do it, I wanted to so badly but it was a fight every moment just to get through the door.

How many pills do octogenarians take per day on average?  Because I think if we measure age by pills I am way up there.  I am on 4 brain meds now, more than I have ever been.  I tried cutting back but it all fell apart.  I can't do it right now.  I need them all.  And that sicks me out.  How did I manage everything for so long, and why can't I now?  I'm trying to remember that I have to be on these meds now to keep moving forward...that if I stay on them I can get healthier, to a point where I can be on fewer.

I think one issue is that my job is so isolating.  When I was serving I saw different people all day long, worked with people I established friendships with, and most importantly wasn't in a situation that allowed agoraphobia to overtake me.  My job right now, I see the same people every day without any chance of contact with others, there's no opportunity to develop friendships with them (wrong age/sex), and I can get away with not doing anything but going to work and going home, with rushed swoops through the grocery store that always make me dizzy back by the dairy section, why is dairy so disorienting??

This is such a long blog post, I'm sorry... it is a diary entry, and I hope if you got this far it hasn't totally sucked to read.  After I saw my psychiatrist yesterday, his friendship and kindness and belief in me propelled me to visit a little grocery store I adore and buy shade plants to plant in the shade of the oak tree I worship that overhangs my porch, and I am listening to music for the first time in months... it's all about patience, self-forgiveness, and acceptance of things that disgust me (medication) that are the best route to getting better.

P.S. Dr. W says exercise when you have pudendal neuralgia is specific to the patient.  There is no rule.  There's only common sense: if it hurts, don't do it.

Tuesday, May 14, 2013

Post-2nd Alcock's nerve block

It's 3 weeks after the second try at the nerve block at the Alcock's canal site.  This is a lower spot on my butt than the first nerve block site, which was the ischial spine.

My overall pain level is still higher than it was before this nerve block.  Emotionally, I've been all over the place about it.  Sometimes it's no big deal; sometimes I want to give up.  It's the implications that are more upsetting than the pain itself.  Mostly, I am frustrated that this pain has been around so long, and I am scared that it will be around forever.  I'm also worried that this increased pain is my new reality.  I'm worried that the doctor nicked the nerve or something.  That worry is probably unfounded, but I don't really know much about it.

This nerve block numbed the area but didn't take away the pain.  That implies that the injection wasn't at the site of the nerve entrapment.  The block at the ischial spine numbed the area and took away about 90% of the pain.  I didn't see lasting improvement afterwards, but a couple weeks after the block I peed 5-6 times in a row with very little pain.  That was encouraging.  I'm hoping that Dr. Westesson will want to try that site again.

If my pain were like it was while the anesthetic was in effect after the block at the ischial spine, I would be ecstatic.  The pain increased as my bladder filled and went away after I emptied my bladder, and peeing was painless.  If that were my life, it would be a huge improvement over where things stand now.

As a side note, my period has been around for more than 2 weeks now, and my first period after the first nerve block was around for 10 days.  I googled and found a number of accounts of women having screwed-up periods after getting steroid injections, so I'm not too worried.  I will ask the doc about it at my next appointment.

I don't know if you can tell from my blog posts, but I am feeling pretty....bland these days.  I don't want to engage intellectually.  I am afraid that any good thoughts or feelings will be taken away from me, so I'm avoiding thinking or feeling at all.

I don't even know how to write this goddamn blog post.

I feel like I've told this miserable story too many times.

I am less fearful than I was a few months ago.  I think about what I told my psychiatrist at our last visit -- March 27 -- and many of those things do not apply anymore.  It drives home for me an observation I've made over the years that the brain heals itself if it's in the right environment.  I stopped taking a crazy-making med, and I curled up in a ball and watched every episode of Monk.  It's like putting on a helmet after getting knocked in the head for a while.

It has made me realize that I need to look at my periods of recovering from mental problems as analogous to physical rehabilitation.  It is the same thing; we just don't recognize it.  I am not seeing friends, not eating well, afraid of the grocery store, afraid to laugh.  So, I need to work step by step to get back to functioning fully.  That means exposure and practice.  Just like learning to use a leg again -- you have to expose the muscles to the act of taking a step, and then you have to take that step again and again.  After you get the beginner step down, you expose the muscles to taking a bigger step and practice that one.

One of the ways I am compounding all the stress in my life is by comparing my life to others'.  Facebook is terrible for this, looking at people getting engaged, married, having children.  I have been struggling with this issue a lot over the past few months.  I've stopped believing that I have any kind of future.  I never thought that before.  I always thought that no matter my troubles, the coming years would bring marriage and kids, work I believe in, floorboards that don't trap kitty litter.

I am getting jealous of my peers.  That's a new one for me too, and it's not pretty.  I wonder why their lives seem relatively straightforward while I'm bivouacking or something.  I used to think my pain and mental illness were taking me places I never would've gone and making me into a stronger, wiser person than I would've been otherwise.  Now?  I don't give a shit!  I just want to be normal.

Bivouacking might not be a bad idea.  I need to disconnect from others' lives (and the internet) and reconnect with mine.

My next nerve block is on May 22, a week from tomorrow.  I have an appointment with Dr. Howard in June.  He will probably do the Q-tip test again to see if my sensitivity has gone down.  If it hasn't, I'll probably be off to see a urologist about whether I have interstitial cystitis.