Post-doctor, skenitis #5

Just got done with my appointment with Dr. Howard, the follow-up to his diagnosing me with skenitis and putting me on a trial course of antibiotics for three months.

The Q-tip test showed that while I still have pain in the Skene's glands, the worst of my pain is now (or was today) in the vestibule. Dr. Howard pointed out (to me in the mirror) that I have slight tears at the 6 o'clock point in the vestibule. The worst of my pain is at a higher point on either side, however. He was encouraged that the pain in my Skene's glands is lower. I, of course, am wondering if the pain is just walking around!

I told him that I also have clitoral pain, which he said is almost always a separate problem from vestibulodynia. I said that my gut says that the vestibulodynia is due to muscle issues while the clitorodynia is due to something else, and he said, "I'll be frank with you -- that's usually the case."  He told me that clitorodynia is usually due to entrapment or impingement of the clitoral branch of the pudendal nerve.

Neurontin makes me sleepy at the doses I need to take it for pain relief, so the doc decided to put me on a tricyclic antidepressant -- Norpramin (desipramine). Tricyclics are commonly used for pain relief. There are two others if this one doesn't help or if the side effects are too bad. I'm starting at 10mg and will titrate up to 50mg or as far as I can go.

The doc told me he has a colleague in Phoenix (this guy) who does surgical release of the clitoral branch of the pudendal nerve. He said it's 30-65% successful (he always has these specific numbers) at resolving clitoral pain, and it's an option of I don't see improvement with meds and want a more definitive resolution to the problem. He said I'm not a candidate for the pudendal surgery they do at Rochester, but his colleagues at U of R have done hundreds (gahhhh) of vestibulectomies if I want to treat the vestibule pain by literally cutting it out of me.

An hour later and I get to drive another four hours back home.

I feel like today I've learned that my pain is not simple. I feel like I can step into some new territory where I have to deal in nuances in order to make progress instead of hoping for wham-bam answers.

I asked the doc if neuropathy ever resolves itself. He said that he's seen it when the pain is due to scar tissue and the like, but entrapped nerves stay trapped. So there is some hope that this pain will resolve if we get it low enough with the tricyclic (or with Neurontin), which I'll keep in the back of my mind but not rest on.

I think I will work on my muscles so I have a shot at getting the vestibulodynia to a lower level. That has receded when I've eaten well and when I've spent lots of time lying down, so I know it's possible. I guess that means I should work on my diet too. Oh dear! I want donuts!

I don't know if I have the energy to do all of this. When I was in grad school, I kept a spreadsheet of my pain and what I ate every day and made some real gains. I don't know why I have less energy now. I guess my life is kind if gray, and it wasn't then. 

So there's the next puzzle. How to get my energy back. My joie de vivre.

Kate Spade Vulva Dress / Skenitis #4

Do you see the vulvas?

$428 of them.

My appointment with Dr. Howard is less than a week away.  I have six more doses (three days) of doxycyline left to take and I've seen no change in my pain.  I also have not (knock on wood) gotten a yeast infection this whole time, three months of antibiotics!, which makes me think I'm on a placebo.

Then I think I'm experiencing an anti-placebo effect, because certainly something at SOME POINT should help my pain, right?

I've been weathering the flopocalypse, aka menstrageddon, aka eternal period

since my visit in May.  First it was weeks of spotting, which ended with a real period.  Then I got another real period.  And another.  And another.  Four in six weeks.  And I'm not falling over from anemia yet?  Anti-placebo effect?

I think the repeated real periods might be from a new psych med, not from the steroids.  Or maybe my body is sending out egg after egg trying to catch up with where it left off before the steroids took over.

Anyway, the intensity of the flopocalypse has kept me from using the valium suppositories or the lidocaine as regularly as before.  I'll have to admit that to the doc next week.  Both are theorized to have a cumulative effect, but I didn't see anything big happening during the weeks that I was able to use both consistently.  Again, anti-placebo...

I'm guessing that the doc will try steroid injections at the Skene's glands at this upcoming visit.  Apparently he can do them without a simultaneous CT scan.  He said he's only performed surgery to remove the Skene's glands three times in his whole career -- and he's retiring this year -- so that's an unlikely future step.

I'm trying not to get to revved up ahead of the appointment, but I will inevitably freak out the day before, as I've done for every appointment at Rochester.  There's just so much at stake with each appointment.

The following Wednesday, October 2, is my seven-year vulvodynia anniversary.  I looked up what the gift is for a 7th anniversary.  Hallmark says:

Traditional: Wool/Copper

Modern: Desk Sets

The image of copper wool underwear flashed through my head, but then I couldn't stop laughing at desk sets.  Desk sets!  A bizarre anniversary gift to begin with.  Buying one for my vulva??

= = =

Happy to be linking up with the Yeah Write Moonshine Grid this week.  First time in a long time!  Click through to read other Moonshiners' blogs.  Probably none about vulvas, though, sorry.

Skenitis update #3

Looks like I haven't updated in a month. Well, I have nothing to report! Still on doxycycline, valium suppositories, and lidocaine... pain seems the same.

I had a real period twice in three weeks after my body finally recovered from the steroid shots, and I didn't use the valium or the lidocaine very often then. Because my period thought it was the end of times. It had to consume as many tampons as possible before the world ended.

I've been period-free for two weeks or so, and now that I'm back on the valium and the lidocaine, I can totally see that they help. If it wasn't clear before, it is now. The lidocaine I got from the compounding pharmacy doesn't burn -- though applying it and moving everything around down there does make my cooch burn for a while. And I think the valium helps too, though that is more subtle. It's similar to applying ice, except I can walk around without holding a bag of frozen corn between my legs.  I can feel the pain, but it's quieter.

I have a little less than a month left on the antibiotics. I'm not holding out hope that they'll kick in and cure my pain. The doc said he has a 30-40% success rate treating skenitis with antibiotics, so you know. I'm operating at 30-40% of my maximum hope level.

But that's okay. I know this doc has more ideas to come -- and after he retires, the next doc will have ideas -- generations and generations of doctors! I think I'm in good hands.

My main concern is whether vulvodynia will be with me forever. I try not to collapse under my fears about what my life might be if I'm never pain-free again. Mostly I worry about getting anywhere in life, doing what I want, meeting goals, SETTING goals... I feel like vulvodynia and mental illness have marooned me on an island and everyone else is sailing by on their beautiful boats. People say you can't compare yourself to others...it's true. But when you feel like you have so little, it's hard to remember what you actually want. All you see is things you don't have.

The longer my pain sticks around, the more I question everything. I've seen myself die a hundred times over the past seven years, shedding, shedding, leaving behind, giving in. And each time I've thought, "I've got it now. I figured it all out." But I never have. There's always further to dig. All the answers fall apart. My questions change. The universe bends around me, flips inside out, becomes a new animal. I've always believed the saying that the more you know, the more you realize you don't know. Now I'm seeing that body of knowledge as infinite. I can swim forever, but I'll never get off the shore.

I used to believe in math like math was God. Now I think math might not exist. It's a trick. A wink. The universe is a single point. The universe used to love me. Now it does when I look at lily pads or listen to cicadas, but the rest of the time it is the work of a prankster.

This probably isn't making sense anymore. But I bet some people know what I'm talking about. The women I correspond with, sometimes we pull words right out of each other's mouths. Maybe they'll understand my universe-as-prankster concern.

Anxiety and normality

I wonder if I would have mental problems to the degree I do if I didn't have chronic coochie pain.  Thinking about that alternate universe isn't helpful, but I am in a phase where I am really pissed at vulvodynia.  My anxiety is so high these days that I feel like I'm in heart-attack mode all the time, and I know it's my stupid crotch putting me there.

I need to relax, fully, somewhere.  I lie back on my bed to meditate and when my mind drifts, it drifts to funny things.  So there's background noise that is trying to help me calm down.  But at some point I get jumpy, and a worry sprouts, and I find myself opening and closing my eyes, fighting the worry down.

The way my heart is beating these days, it's like I'm in a screaming match with someone.  I don't attribute it to vulvodynia.  I don't make the connection.  But there's the endless period, the menstrual accoutrements, the lidocaine, the valium, the antibiotic, waiting to see if the treatments will work, food, sitting, libido, wanting to date again before I die, standing here at my desk feeling like I've got a prickly pear between my legs.

I've read that unpredictable work can be stressful.  I think my pain's unpredictability stresses me out too.  It's all over the place and I never know where it'll go next or why.  I never know how it will react to a set of variables.

My cooch sets off my anxiety which wears away at my quality of life, and I'm feeling like a void right now.  I want to be normal.  As normal as I can be.  People say there's no such thing as normal, but there is too.  It's a realm, not a single figure.  Bell curve.  Majority.

I think we've found meds that mostly control my mental illness, but they don't make me a superhero.  I tell myself, "No one would be able to handle vulvodynia without going crazy."  It'll sink the most normal ship.

If my vulvodynia is a permanent condition, can I be normal despite it?  And if I can be normal, what treatments will it take to get me there?

Skenitis regimen update #2

I don't think Feedburner sent my first skenitis-regimen update out via email, so if you didn't read it, it's here.

Lidocaine
The lidocaine continued to burn, so I ordered some from a compounding pharmacy.  The compounded solution has no peppermint oil in it, and I haven't noticed any burning from it.  Yay!  Peppermint oil + vulvodynia = huge mistake.  Beware.

However, I haven't noticed much benefit from the lidocaine either.  Maybe??  I think I should feel some numbness, but I don't.  I've heard that using lidocaine over time can improve pain, so I'll keep at it, but I don't think the individual applications are providing much benefit.

Valium Suppositories
Again, the Valium might be helping??  But if it is, it's not obvious.  I still get pain flares, and I don't seem to have had an overall drop in my pain levels.  But again, I think there might be a long-term benefit from the suppositories, so I'll keep at them.  Plus, the Valium is intended to help with muscle issues, and those may not directly influence my vulvar pain.

Doxycycline
I was still having scary episodes of drowsiness that I suspected were a side effect of doxycycline combining with my other meds.  The internet has no comment on doxycycline interacting with those other meds in ugly ways, so here, I am the precedent.  I stopped taking both the Neurontin and the oral Valium and I no longer have problems with drowsiness.

I was doing fine on the Neurontin-Valium combination (plus all other meds) before I started the doxycycline, and it sucks to have to stop them.  Neurontin was helping my pain and oral Valium was helping my anxiety.  Dr. Howard said I should have minimal bloodstream absorption from the vaginal Valium, but I wonder if this is another BMI issue, like with the steroid shots -- most people have no side effects from them, but my last period lasted 4.5 weeks, or maybe longer as it's still sort of doing something down there, and it's because the steroids have a greater effect on a body with a low BMI.

Stopping the Neurontin isn't a huge loss.  I think I'd have to take Neurontin at regular intervals throughout the day to really benefit from it, but when I've tried that in the past, it has also led to scary drowsiness.  I've read about topical gabapentin (gabapentin is the generic of Neurontin -- I take the generic of everything, but I usually use brand names), so maybe I'll ask the doc about that at my visit in September.

Besides the drowsiness, queasiness has been the worst side effect from the doxycycline.  I have to take it with food, and sometimes it seems I take it with the wrong kind of food and I still get queasy.  It's manageable, though.  Otherwise, my belly is a little bloated, but I have yet to feel yeasty, which is awesome.  But maybe that's because of the extended-period thing -- my period always kills off minor yeastiness.  I think it must be a more acidic environment than pre-period.

I do wonder if antibiotics caused my vulvodynia in the first place.  Bactrim and Cipro, used to treat UTIs, both give me level-10 pain -- did I take them too much?  That's one theory about what causes vulvodynia.  Thankfully, doxycycline appears to cause me no pain.

Now's the point in the blog post where I get too frustrated with the whole thing to keep typing.  There are too many questions.  For example, right now I'm trying to google about how long it should take for a three-month course of antibiotics to start working.  Should I feel something by now?  I see six weeks, eight weeks... I don't suppose it would kick in after a month and require two extra months to get all its work done.  But this is like the steroid shots -- waiting for evidence that we've got the right diagnosis, and time is ticking past...  My psychiatrist told me that it takes a while for the antibiotics to get through the inflammation that a long-term infection causes...

And if this treatment doesn't work, we at least know it probably isn't a bacterial infection, especially with a broad-spectrum antibiotic like doxycycline.  Then it'll be back to the drawing board, more and more patience patience patience.

Resilience

One of my friends asked me recently how I manage not to go crazy living with constant pelvic pain.  I don't know that I had an answer for her besides, "What else can I do?"

Today, in the process of decluttering the apartment, I came across a Scientific American magazine from March 2011.  It's the only one I've held onto from that subscription, and I remembered why as soon as I saw it: its cover story is "How Minds Bounce Back: Where we get the strength to go on."

I hadn't read the article yet, so this evening I sat on my balcony and read it as the sun set.  Here's the takeaway: almost everyone recovers remarkably well from traumatic events.  90% of us.  The article goes into studies confirming the claim -- for example, slow-motion video of recent trauma survivors showing that, indeed, their eyes are crinkling up when they laugh, indicating that they are laughing genuinely and not out of politeness.  I experienced that particular one myself when my uncle died unexpectedly a couple years ago.  I climbed the stairs into my grandma's kitchen, sobbing, and hugged her, and then, a moment later, said, "You're so small!"  "You're so big!" she said.  And we both genuinely laughed.

Chronic stress is, of course, different from the stress of a traumatic event, so the article doesn't specifically address a stressor like vulvodynia except in this one phrase: "unrelenting grief, like clinical depression, is just too much to bear, overwhelming the mourner."  That's a pretty bleak sentence, and it does apply to pelvic pain: we grieve the loss of our former bodies, for example.  But I still think resilience applies in cases like ours.  One point of evidence for me is that I hardly ever dream about vulvodynia.  The two dreams I remember are these, and they are years old:

1. Dr. House, from the television show, said he could cure me of vulvodynia, but he was going to make me cry first.
2. My crotch turned into a jellyfish.

If I've had stress dreams about chronic pain or doctors or treatments, I don't remember them.  That suggests to me that this bad stuff isn't sticking with me, even as I pass through it daily.

Within the past month, both my aunt and the family dog died.  And both times, I saw resilience in the people around me.  Crinkles at the corners of their eyes even as they wiped away tears.  Debates about current events the first day the dog's collar hung on the doorknob.  Knowing that these actions are not out of place during times of mourning helps me understand how I can cope with vulvodynia: I cope because I'm built to cope.  We are built to cope.

I have a new confidence after finishing that article.  Not about vulvodynia, though; all the article did was explain how I deal with it.  My new confidence is about my mental illness.  My entire adult life has been governed by bipolar disorder and anxiety.  Challenge, failure, embarrassment.  But as it turns out, I have a quiet, solid core.  The two dreams I remember having about vulvodynia are punchlines.  I don't know if there's a better indicator of resilience than that.

 

Skenitis regimen update

Here's where I am in following the regimen Dr. Howard assigned me to treat suspected skenitis (inflammation of the Skene's glands):

Lidocaine (5% 3-5 times/day)
Lidocaine burns.  You know why?  There's PEPPERMINT OIL in it.  Maybe lidocaine itself burns, but the burn I feel lasts a half-hour and is minty.  It's the peppermint oil.  Who the hell thought putting peppermint oil in lidocaine was a good idea?  It's like putting Vick's VapoRub on a sunburn.

After the burn fades, I get about a half-hour of numbness-ish.  It numbs my skin, but only on the surface, so there's pain remaining underneath.  Then the numbness goes away.  So there's not been much point in using the lidocaine, and I stopped because I didn't want to feel that burn again and again.

I have the number of a compounding pharmacy, and they gave me a quote on getting lidocaine from them.  I need a prescription from Dr. Howard to do that, but I haven't acted on it yet.  I want to find out if lidocaine ALWAYS contains peppermint oil, and, if not, I'll find some at a regular pharmacy and try that first.  But I haven't acted on that yet either because I'm just generally pissed at lidocaine.

Valium suppositories (5mg 2x/day)
I put 5mg valium tablets (just the regular oral tablets, no special suppository) in my cooch twice a day.  Sometimes I think they help, sometimes I think they do nothing.  My pain varies by itself, and across six years with all my pattern-seeking skills applied, I still cannot say with certainty what causes the ups and downs of my pain.  For example, last night I had an ugly flare that at one point had me on the toilet for relief -- not to pee, just to have my cooch not touching anything -- with my pillow propped up so maybe I could sleep.  I had taken the maximum amount of Gabapentin I take at a time (1200mg) and inserted 10mg of valium, and my cooch was still raging.

THAT was a moment that I needed Vicodin or Percocet or some other serious painkiller, if only to quiet the pain enough to let me sleep.

I've never been prescribed painkillers, but a friend did give me some Vicodin once.  One Vicodin didn't help, a second one reduced my pain to a squeaky point of light -- and then I was asleep.  I could've used that last night.  The emotional torment ---- I mean, it is demeaning to sit on the toilet with a pillow trying to sleep, and it is still, after all these years -- it is still disgusting to have this pain in the area where it is, this area associated with purging and sex, the most intimate things a human does.  Ugh.  Gross.

I'm thinking of asking Dr. Howard for painkillers for moments like those.  Maybe he will refer me to pain management, though.

Doxycycline (100mg 2x/day)
I seemed to be having a bad side effect from the doxycycline.  It was making me very drowsy, to the point where I had to lie down on the floor at work and take a nap before driving home one day.  Not good!  Very not good.

I called Dr. Howard's office to tell them about the side effect and Dr. Howard switched me to Macrobid -- an antibiotic generally used for UTIs -- instead of doxycycline.  I was on Macrobid for a month about three or four months after my vulvodynia started in 2006, and it did nothing.  When the nurse told me on the phone that Dr. Howard was switching me to Macrobid, I was all, "Ha ha, well, maybe three months will cure me even though one month didn't!"  I am never witty enough to say something like what I said later to myself, which was, "What the fuck is the point in taking Macrobid for three months if it didn't work in one month six years ago when the hypothetical infection was new?"

So I ignored the switch to Macrobid and started messing around with doxycycline and food and water and all the other meds I take, and I have only had one episode of drowsiness since then, and it wasn't sleep-on-the-floor critical.

In general these past couple weeks, I thought I was feeling better -- from the valium, I suspected -- until that flare last night.  I can't explain that flare.  Earlier yesterday, I had to sit on uncomfortable seats for a while, so it could've been a pain echo from that (which is not uncommon with vulvodynia).  I'm analyzing everything I drank, everything I did...

I've had bad pain reactions to antibiotics before, so I hope it wasn't that.  We'll see.

My period has continued, though in really slow, gross form.  I think it's stopping, though.  And I was able to Nair all the Wolverine hair off my shoulders and upper arms, the stuff that grew in from the steroids, and it is making me feel much better about my body.

I am less depressed due to good brain med changes, and I am trying to remind myself that getting upset about vulvodynia is not the same as transitioning into depression.  Anyone would get upset about this shit, no matter the status of their mental health.  It's just hard to remember that because this is happening every day, all the time, so it's messing with my head all the time.  I'm trying to teach myself to measure depression in terms of how I'm functioning, not how I'm feeling.  If I'm saying how I hate myself, how everyone hates me, if I'm lying in bed all day, if my house is a mess, that means I'm depressed.  If I'm on top of my life and not hating myself and not fearful of others' judgment but I'm crying about vulvodynia, it's the vulvodynia.

I've been having a hard time looking forward and believing in the future, and it helps to read the Facebook vulvodynia groups and remember that there are women everywhere going through this.

Loss Language

The second-to-last stanza of Anne Sexton's poem "Gods" is:

Then she journeyed back to her own house
and the gods of the world were shut in the lavatory.

On May 23, 2011, I was up all night illustrating this stanza.  I was flooded with bipolar energy.  I put Venus on the toilet.  Buddha sat on the bathmat.  Zeus was taking a shower.

At some point I conked out, curling up between the laptop and the drawing pad.  A text from my dad woke me a short time later.

"Please call."

There was no pronoun.  I knew from the fact that there was no pronoun, no "me" after "call," that someone had died.

"Have you heard the news?" my dad asked on the phone.

"No," I said.

"Uncle Ken passed away last night."

"Oh my God," I said.  "You're kidding."

Uncle Ken, my dad's brother.

I heard my Great-Aunt Julie say the same words over the phone when my grandma gave her the news later that morning.

"Oh my God," Aunt Julie said.  "You're kidding."

I am a language lover.  A common fear among us language lovers is that our culture is diluting our language.  There are too many "Oh my Gods" in the world; our language has endless more complex, more beautiful expressions of grief.

Death is a dialogue between / The spirit and the dust, says Dickinson.

The heart shuts, / The sea slides back, / The mirrors are sheeted, says Plath.

I feel / the green field of hope, / and then, descending, / all this world's sorrow, / so deadly, so beautiful, says Oliver.

But those things didn't come out.  What came out was "Oh my God.  You're kidding."

I think there is no better way to express grief than with phrases like these.  These phrases are like lightning; they are the lightning that strikes through the body when the body begins to grieve.  Lines of poetry are lucid.  They are true.  But they would not have been accurate in the moment when I was on the phone with my dad and I learned my Uncle Ken had died.

I didn't do any drawing for a while after that day.  If I drew, someone would die.  But I did sketch my Uncle Ken before I went to bed.  His back was to me, he was wearing his button-down and his shorts and his tall socks, and he was standing at the top of a hill.

I can't say much about my Uncle Ken.  His details are too precious to share.  But I can tell you that I still fuss with his verb.  He was a nice guy.  He is very smart.  He was a patient teacher.  He is a good friend.  Was, is, was, is.

I'm not convinced there's a reason to pick one over the other.

= = =

 

New word: Skenitis (2nd visit with Dr. Howard)

Twice while I was in the exam room for my second visit with Dr. Howard, the lid of the garbage can started rocking up and down by itself.  Both times, I heard the words of Anne Sexton:

He starts to laugh,
the laughter rolling like a hoop out of His mouth
and into mine

Apparently, that garbage can is God.

The first time the garbage can laughed, I was alone in the room doing my pre-doctor's-visit meditate-pray-atone-plead.  The garbage can said, "You are so frickin' uptight," so I stopped.

The second time the garbage can laughed, I was mentally rejecting a theory that Dr. Howard was putting forward about my pain.  The lid rocked up and down, and I thought, okay God, I accept your hoop.

Dr. Howard's theory is that I have skenitis.  Skenitis is inflammation of the Skene's glands, which flank the urethra.  When the fellow who was with Dr. Howard, Dr. Paula Boyle, did the Q-tip test -- I think I was her first! -- the Skene's glands were the spots where I wanted an exorcist in the room.  When she touched the urethra itself with the Q-tip, I hardly felt any pain.  The rest of the vestibule varied from 3 to 9 on a 10-point pain scale.

I can't google skenitis.  There are too many horrifying pictures that look nothing like my vulva.  But my mom googled it, and she said there's evidence that pain can be referred from the Skene's glands to other parts of the happy crack (a term I use because it includes the perineum and anus).

So Dr. Howard's plan for me is this:

Continue the Gabapentin (I'm up to 1200mg all at once at night)
Topical lidocaine 3-5 times per day
Valium suppositories twice per day
Doxycycline

He says he has had a 30-40% success rate clearing up skenitis with an extended course of doxycycline (an antibiotic).  The plan is that I will take it for 3 months.  So I will be doing all the tricks to stave off yeast infections... ahh!  (Here is a great guide to fighting yeast infections.)

I've had problems with lidocaine burning my skin in the past.  Dr. Howard says that if it burns to start and continues to burn for more than five days, it won't ever stop burning, and I should stop applying it.  We'll see.  I can't remember how I was applying lidocaine before.  That was probably 5 years ago!

The Valium suppositories are for the muscle issues I have from the pain.  Funny -- my psychiatrist handed me a study a couple sessions ago about Valium suppositories for vulvar pain.  And here I am, assigned to take them!  And in the intervening time, my psychiatrist prescribed me Valium for brain stuff.  So I am feeling like the maximized version of a disillusioned 1960s housewife.

Dr. Howard seemed to think I don't have bladder issues.  I am comfortable with that.  I don't have the urgency and frequency associated with interstitial cystitis, and those seem to be essential for IC's diagnosis.  (Visit this site for all the IC info you could ever want.)

Dr. Howard held onto the diagnosis of vulvodynia/vestibulodynia.  I usually hate that diagnosis because it essentially means "we don't know," but I trust Dr. Howard's judgment more than I've trusted other doctors', so if he wants to diagnose me in part as "we don't know," that's fine with me.  (Though I'd add clitodynia.  I think it deserves its own mention.  If you don't know what these words mean, -dynia means pain, and the rest is exactly what you think.)

Dr. Howard said it's a good thing the nerve blocks didn't work because nerve entrapment wouldn't have accounted for all of my pain -- specifically, it wouldn't have accounted for the urethral pain.  Knowing that entrapment is unlikely, we might be able to find a single source for my pain instead of having to treat multiple sources.

But I have seen my pain improve when lying down, which is typical of nerve entrapment.  My theory is that lying down allows my muscles to relax because they aren't defending my urethra against movement and pressure.  When my muscles relax enough, the pain in the vestibule quiets down significantly.  Then I'm left with pain in the urethra/bladder area.  And maybe that's why lying down for multiple days in a row improves my pain so much.  Maybe it has nothing to do with nerve entrapment.

When I told Dr. Howard the nerve blocks were messing with my period, he said that with my low BMI, it makes sense that even low doses of steroids would give me side effects.  But I didn't tell him about my turning into a werewolf.  My plan is to Nair my entire body from my shoulders down and see if the fur grows back.  I don't think it will.  I'm pretty sure it's the steroids that are making me furry.  But if not, I will just have to find a good groomer.

I hope I've recorded all of the important info here...please feel free to ask/email questions.  Dr. Howard wins the Battle of the Crotch Doctors handily.  He even went off at the end of our visit about how 75% of the things the hospital won't report to the patient over the computer (via MyChart, if you're familiar) are women's issues -- pap results, for example.  "You can tell how I feel about this," he said after his rant, almost like he was apologizing.  I wanted to say, "I accept your hoop!"

Doctor/Waiting

I am waiting for the time to see my doctor.  I took a swim in the hotel pool, and then I sat in the sauna reading Anne Sexton:

Today I am terribly patient.
Today crows play black-jack
on the stethoscope.

My aunt is in the hospital having a brain tumor cooked down.  It came on so fast that a couple weeks after we last saw her, her left side started to go, like a stroke patient.

She happens to be at the hospital where they do this brain-tumor-cooking thing.  It is a new treatment.  If I remember correctly, she is the 11th patient to have it done.

11 is a lucky number, according to the people with whom I've talked numbers.

I go in today to confirm via Q-tip test that the four nerve blocks I've had didn't reduce my vulvar pain.  When I went in for the first nerve block, the doctor said that the blocks have a 50/50 success rate in reducing pain caused by pudendal neuralgia.  That buffers me from feeling totally defeated today.

Today's doctor has a bucket full of other ways to treat pelvic pain.  He is one of the best guys to see in the country, endless scarves up his sleeve.

On the drive here, I was thinking about medical urgency.  A brain tumor is urgent.  Cancer in general is urgent.  A vagina falling out is urgent.  I understood that when a gynecologist told me about her next patient's vagina and recommended that I bathe in baking soda.

In general, chronic pain isn't going to kill a person.  Chronic pain is like psychological disorders.  They decimate a person's quality of life, but unless there's a severe breakdown, they're not urgent.

That's what pelvic-pain patients are up against.  Until they find a doctor like the one I will see today, someone who understands that pelvic pain is a serious problem, they will be dismissed over and over with instructions to bathe in baking soda.  Because chronic pain, no matter how you look at it, is not medically urgent.

I have been thinking of my aunt all the time.  I don't know if I'm ever not thinking of her.  It's something you carry in the corners of your eyes.  It's still something I can't believe.  I feel a bit of relief knowing she is in some of the best hands possible, but there is still so much luck involved, both bad and good.

I win because I hold a royal straight flush.
He wins because He holds five aces.
A wild card had been announced
but I had not heard it
being in such a state of awe
when He took out the cards and dealt. ...

Dearest dealer,
I with my royal straight flush,
love you so for your wild card,
that untamable, eternal, gut-driven ha-ha
and lucky love.

My neighbor Lucinda

"Can you shave my legs for me?"

Lucinda was six or seven months pregnant.  The hairs on her legs looked fully grown, about a half-inch long, longer than most women ever want to display.  My roommate and I were harboring her while her boyfriend cooled off in their apartment and occasionally out back, the red dot of his cigarette fading in and out.

"I can't reach them," she said.

She was nineteen.  She had a round face and large brown eyes.  She had once left us a note asking us to knock on their door when the cable guy came by.  The note had had both K's in knock, but not the C.

I got a fresh razor, a towel, and some shaving cream from the bathroom and a bowl of water from the kitchen.  She lay on the faded area rug that spanned our living room, her pants rolled up to her knees.  At first I forgot how shaving worked.  Then I started applying shaving cream thinking of her legs as my own.

Lucinda's boyfriend had charged our door after she ran down the stairs looking for help.  I cracked the door open and saw his face loose with anger.  He put his manners on when he saw me.  I told him Lucinda would be staying with us for a while.  He went away.

Now she lay on her back talking to me.  There was some trouble with the baby.  She was too stressed out, she said; the baby wasn't growing like it should.  And she wanted her GED.  They were living on welfare.  Her boyfriend's learning disability had rendered him illiterate.

"I can help you with your GED," I said.

"Just the bottom of them," she said.  "Just shave the bottom.  You don't have to go above my knees."

The next day, Lucinda went upstairs to get her stuff and came back down with a bulging trash bag.  She guided me down long Iowa roads, farther out into nowhere, until we arrived at her boyfriend's aunt's house.  The living room was riddled with Americana.  Bald eagles were a favorite.  Our goodbye was a wave.

She called me a few days later asking me to bring her back.  She gave me a time I was supposed to be there.  I overslept.  When I got to the house, the aunt didn't recognize me.  She told me Lucinda had left hours ago.

I remember making a U-turn on the way back, and then another, and stopping the car on the shoulder.  But I don't remember why.

Lucinda and her boyfriend moved out of the building shortly after she got back.  My roommate finished her degree and left, and I moved into another apartment for my final year of college.

It was a year later, as I was graduating, that I saw Lucinda and her boyfriend walking into the Wal-Mart as I was getting into my car.  Lucinda lagged behind her boyfriend, wearing a jacket I remembered.  Her boyfriend had his saggy pants and his baseball cap.  And there was no baby in their hands.

 = = =

.

Lucinda's name has been changed

I am seeing the doctor on Wednesday and I am bringing my list

I called Dr. Howard's office to see if he would do a pap for me at my appointment on Wednesday.  The woman who answered the phone told me that he probably wouldn't because he's retiring later this year and might not want to take on new OB/GYN patients, but I could always ask when I see him.

I laughed and said that I would ask as I don't want to get into the stirrups any more than I have to.  Then I hung up and freaked out that Dr. Howard is retiring later this year.

Don't retire!  Don't retire!  I'm just establishing a relationship with you!!

I know he must have colleagues waiting in the wings to take over for him, and that they might bring different strengths to the table.  It was just an emotional blow -- over and over, I have hit brick walls in trying to find a (real) diagnosis and a treatment for my vulvodynia.

The pudendal nerve blocks didn't work, or they don't seem to be working.  I'm guessing Dr. Howard will perform another Q-tip test at my appointment on Wednesday and that I will pass, or fail, or whichever term you use when the touch of a Q-tip feels like a razor.  I vote for "pass."  Passing will mean that the nerve blocks haven't improved my pain.

We haven't tried the genitofemoral nerve block.  If Dr. Howard thinks there's a Q-tip's chance in an earwax factory (?!?!?) that a genitofemoral nerve block will help, I will do it.  Even though with all the steroids...

I am becoming Wolverine.  There is hair growing in places where there was no hair before.  Like my shoulders.  And other places I don't want to admit to.  It's peach fuzz, but it's constantly standing up straight like I'm in an episode of Scooby-Doo and the ghost has just revealed himself.

Dr. Westesson didn't seem sold on the genitofemoral block because, as he said, I wouldn't have pain with sitting if the nerve entrapment were up front.  But dude.  Today, I've been standing all day, and the pain is so bad I can hardly walk.

However, I've read that the genitofemoral nerve isn't involved with the parts of the vulva between the outer labia, so that's another strike against it.  But I want to do the genitofemoral block just to rule it out.  I would climb Mount Everest to rule it out if it were a potential cause of my vulvodynia.

I'm making a list for this visit to make sure I ask Dr. Howard all of my questions.  So far, it's this:
- Genitofemoral block
- But c'mon, doc, what about all my weird hip problems!
- PAINKILLERS.  REAL ONES.  I know other women who have had painkillers prescribed to them despite doctors claiming that they "don't work" on this condition.  You know what?  Let me try.  LET ME TRY.  I'm suspicious that doctors don't want to prescribe them to me because they fear I'm an addiction risk because of my mental illness.  But I've been on a number of addictive meds FOR mental illness and never had a problem.  So let me try.  Let me try.  Because if they do help, they will make my life so much less sucky.
- Physical therapy
- Interstitial cystitis
- Which seems like a mismatch but both docs seem to think it's likely, so go ahead and refer me to an IC doc
- Valium suppositories
- Here's a study my psychiatrist printed out for me about them
- Botox
- What the hell do I do after you leave me
- Marijuana
- Interferon injections
- Amitriptyline/Nortriptyline (low-dose MAOIs)
- What about an fMRI?  Would it maybe show nerve entrapment if it exists?
- Bed rest.  Please put me on bed rest.  I will be miserable but I will pee like a goddess.

If you have any additions, let me know.  I am always terrified of being an annoying patient, but I'm going to have a list, and he's not leaving the room until I'm through with it.

Anxiety vs. the Hospital's Third Floor

I asked my friend in Germany if she could give me a word that means "the relief one feels when one is crying and one remembers one didn't wear mascara today."  She replied with "die Mascaraabwesehnheitserrinerrungimweinenerleichterung."

I apply this word retrospectively to the moment a couple weeks ago that I was sitting outside Parma General Hospital at a picnic table smearing tears all over my eyes. I was experiencing die Mascaraabwesehnheitserrinerrungimweinenerleichterung in part because a slight Indian man was at the curb loading up his vehicle with medical supplies.  Die Mascaraabwesehnheitserrinerrungimweinenerleichterung made me think I had a shot at being attractive.

I heard my mother call from beyond what I imagine is an ice-cream booth that serves employees who click their heels together as they swarm to the picnic tables for lunch each noon.  My mother and grandmother were standing what seemed a dangerous distance away, just outside a giant revolving door.  I rushed across the entrance with my face to the parking lot, not wanting anyone to remember me as the person who had inside experienced "the embarrassment one feels when one repeatedly tries to board an elevator but one's body keeps jumping out of it unbidden."

I hugged my grandmother.  "I'm sorry," I said.

"He didn't seem to want to see us today, anyway," my mother said.

When we had arrived earlier, my grandmother and mother rocketed up to the third floor to see my grandfather.  I took the stairwell.  The stairwell allowed no third-floor access.

I found this discriminatory.  Who stops the loonies from seeing their grandfathers?

I walked back down to the first floor.  One of the elevators stood open, its arrow pointing up.  "This is a sign," I thought.  So I scouted all four corners of the building for another stairwell, which, if it exists, exists in places where people are cut open for stuff.  I went back to the elevators, a different one of them standing open now with its arrow pointing up.  I got in the elevator and pressed the button for the third floor.  The button transported my body back outside the elevator.  I tried again, and again I found myself in the hallway.

I sat down.  Employees streamed around me.  My phone lit up: "You can't get here by stair.  Do you want a nurse to come help you?" my mother wrote.

"No, I just want to sit here and feel like an idiot for a while," I replied.

I used to take elevators without a second thought, but a period of stress has plowed my mind under.  Anxiety requires rehabilitation, just like any other injury.  I'll get on an elevator someday as part of that rehabilitation.

Driving away from the hospital that day, I experienced "the pride one feels when riding to one's grandmother's house in the back seat of a car without experiencing too much panic."


= = =

I rejoin yeahwrite this week!  Yeah!  Click through to read others' blogs.  Thursday is voting day!

 

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.

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.

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.

Alcock's nerve block - take 2

When I last wrote, I told you that Dr. Westesson was going to try the genitofemoral nerve block this time around if the Alcock's canal nerve block didn't work.  Well, Dr. Westesson ended up doing the Alcock's canal nerve block again.  Last time I wasn't sure if he had numbed me -- but indeed he had.  And the fact that I couldn't tell he had numbed me meant the blocks had missed their marks.

So the doctor did a second round of blocks on the Alcock's canal.  This time I could tell that I was numb throughout the area, but I still had pain.  That means that the Alcock's canal site along the pudendal nerve is probably not involved in my pain -- if it were, numbing the site would've taken away my pain.  The first blocks, in the ischial spine, took away about 90% of my pain.  Dr. Westesson said it's possible the entrapment is somewhere else along the nerve.  If you ask me, geometrically, this is making less and less sense.

When he was doing the blocks -- one on each side -- I could feel the pain traveling up each side of my crotch as if highlighting the nerve's path.  Ever since, the pain has seemed worse.

At the end of the day on Friday, even after standing for most of the day, my pain was in what I think of as the "exquisite" zone.  When I saw a dermatologist for my pain, the resident working with her said that pain conditions in the genitals can be "exquisitely painful" because of all the nerve endings down there.  It seemed strange word choice.  Apparently it has a medical meaning ("extremely intense, keen, or sharp").  But at the time all I could think of was chandeliers.

The "exquisite zone" for my pain is a blend of both medical meaning and chandelier meaning.  My pain is "exquisite" when it's as if I can see every little nerve ending down there, and each one of them is being traced by a tiny razor.  In my synesthetic view, my exquisite pain literally looks like a chandelier.

So after work on Friday, I sat my exquisite self down in my car and the pain immediately started to jack up.  Imagine walking closer and closer to a hive of bees.  That's what the pain sounded like as it grew -- and I knew I was headed for a heap of pain if I didn't lie down when I got home.

I lay down all weekend, and my pain stayed relatively low.  I really, really appreciated that.  Today I stood all day at work, feeling extra-thankful for my standing desk.

When I go back in a few weeks, if this nerve block doesn't work, Dr. Westesson will try the genitofemoral block.  I think it's possible that the genitofemoral nerve is involved in my pain.  I have had a lot of weird hip issues over the years, including super-sensitive skin over the area and pain.  However, I don't think the genitofemoral nerve is as involved in the vulva as is the pudendal nerve, and that is the main area of my pain.  Plus, as Dr. Westesson pointed out, if the entrapment were in the genitofemoral nerve, I wouldn't have increased pain with sitting.

As I am sitting right now and hearing those bees approach, I am thinking that yes, the pudendal nerve must be the one involved.

So I'm hoping this nerve block works.  The doctors have both said that some people report that their pain gets worse after a nerve block before it gets better.  Maybe, hope against hope, that is why I am feeling worse.

As I mentioned before, both doctors have hypothesized that interstitial cystitis might be involved in my pain; this past visit, Dr. Westesson said there is a doctor at U of Rochester who has studied IC extensively.  I had two urologist here in Cleveland tell me I don't have IC -- now I have two pelvic-pain doctors in Rochester telling me I very well might.  I think I'll think about that one later.

Nerve blocks: From Alcock's canal to genitofemoral nerve

The first nerve block didn't do anything to help my pain.  That was in the ischial spine.  The second time, April 3, the doc tried doing the block in the Alcock's canal.  Same nerve, lower down the butt.  That doesn't seem to have worked either.

I go back on Monday, April 22, and the doc will try doing the block in the genitofemoral nerve, through the abdomen.  I feel like if I have hope that it will work, it definitely WON'T work because the universe likes to see me crumble.  But I feel like I have to have hope because, rationally, that's what you have to do in these situations.

I want to explain all the reasons why I think the next nerve block in the new location may or may not work but then the universe will know what I'm thinking and it will do the opposite.

About a month ago, I went off a med that was making me crazy, like crazy, like eye-bulging crazy according to my mom, which is a funny image, frog-like, and my anxiety broke soon after I stopped the med, and if I never go back there for the rest of my life that will be good enough for me, even if I spend every day in bedridden depression.  I just keep reminding myself: this mental state isn't THAT ONE.

Now I am in some kind of shadow zone where I am afraid of where I was and I feel helpless in the face of the future.  I feel like I've spent everything I had, tried every corridor in this rat maze and now the only logical thing to do is bed down here but there is no bedding and none of the other things a rat needs to live.

I'm going back through my months and years to remember the last time I felt truly good.  I keep going back to 2008... I was in grad school... I was eating extra and I was piling my brain with constructive things.  My self-discipline was high.  In my journal from that time, my handwriting is uniform.  These days, when I do journal, it's illegible even to me.

At the time I had a grad assistanceship under a professor whom I called Sandpainter because he was so measured and patient in everything he did, painting one grain of sand at a time, not for the detail but for the practice of it.  I think that made a difference.

I wrote some other stuff here but it was too pathetic.  So I'll just end this here.  My mom told me to focus on the most basic of basic things right now.  So I wiped out all the dust from behind my toilet.  And then I dusted the plunger.  And after a few days I had detailed the whole bathroom.  Then I slept all my extra hours for several days, but that's how it goes.

Meeting Eyes

Tall, dark eyebrows, body made to work.  Then he was gone.

My doctor had swooped by the open door first.  I knew the patient would follow, so I waited, actively waited to see who it was.  Tall, dark eyebrows.  A possible "You too?"

I knew his name was Adrian; I had heard the doctor calling it.  Now out in the waiting room, I heard Adrian say, "Ceramic, granite, anything you want."  A thank-you, a thank-you.

The assistant warned me the numbing shots would feel like bee stings.  She and the doctor walked back and forth in their lead aprons.  The machine whirled about me, a cross-section of my pelvis up on the screen, my chin resting in my hands.

They rolled me out; they stung me; they shoved a needle through my butt cheek toward my ischial spine.  The anesthetic would kick in immediately and last several hours.  The steroid would take a couple weeks to kick in (or not) and prove (or disprove) the nerve-entrapment hypothesis.

"How do you feel?"

I walked a few steps between the curtain and the bed.  "Strange balance," I said.

"Do you feel any pain?"

I sat down.  "In the urethra?  But it might be fading."

"That makes sense," the doctor said.  "The urethra is the most innervated area."

Now it is a week and a half later.  A couple days ago, I thought I was feeling less pain.  Then my period started and it was all back to normal.  The reduced pain, I think now, was a coincidence.  It happens sometimes.  So I'm still waiting for signs that the steroids will work.

That guy I saw walking by the door, Adrian -- he was the first person with pelvic pain I've ever met.  Not a word between us, and only a split-second's look, but I do think it was a look of "You too?"  Me too, and maybe the nerve blocks will also work for me and I'll be so thrilled that I'll offer the doctor a free counter top or bathroom floor or, I guess in my case, a really, really lovely blog post.

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Native Tongue

"We love your grandpa!" the nurses called after us.  Of course they loved him.  He is a flirt.  He likes to shine his crooked smile for the ladies.

Grandpa navigated the way to the dining room, circled our choices on the little menus, ate silently next to his buddy who is also a John.  Fish, jello, cottage cheese, chocolate pie, all of it into his 6'3" frame.  In a wheelchair, just like his mother.

She had spent her final years in a nursing home after suffering a massive stroke that robbed her of English and left her with Slovak.  He, now, was in a physical rehab center, having fallen into a period of weakness.  Whether he would return home remained to be seen.

As we wheeled back from dinner, the sun was starting to set.  The hospital grew rooms.  There was a beer for me in the fridge.  His mother was in the kitchen.  I was his daughter and his granddaughter and his daughter.

"You sure you'll be all right?" he asked about my leaving.  "I guess it's about a half a mile from here."

"I'll be fine," I said.

"Let me call Grandma.  I'll let her know you're coming."

"That's okay, Poppa.  I already gave her a call."

It is a fifteen-minute drive to their house.  I arrived just after sunset.  My grandma sat in her chair watching TV; I took a seat on the couch to her right.

"Poppa called to say you were coming," she told me.

We chatted.  A few minutes later, the phone rang.  My grandma picked it up.  I heard my grandpa's voice on the other end.  After an English "hello," they spoke in Slovak.

Whenever they speak Slovak, it means they are telling each other to give us money.  I braced myself for the tussle that would follow.

Grandma hung up.  "I told him you made it okay."

She stared quietly at the TV.  Then she said, "I know why he was speaking Slovak.  He thought he was calling his mother."  We laughed.

"Dialed the same number both times.  Didn't notice that."  This she said a little self-consciously.  Then, "That's sweet, calling his mother to say 'I love you' before he goes to bed."

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 Linking up for Yeah Write #100!!! Click through to read lots of fun blog posts.

Roch Crotch Doc Nerve Block

Here's a little summary of the nerve block I had in Rochester on Wednesday:

The procedure was performed by Dr. Per-Lennart Westesson.  He is a really nice, patient guy.  He interviewed me before the block, a few questions about my pain.  I told him my pain is symmetrical, so he decided to try nerve blocks on both sides even though Dr. Howard thought the entrapment might only be on the right.

The procedure itself was very quick.  I lay face-down in the CT machine.  They got an image of my pelvis, then they numbed my cheeks up and injected an anesthetic and a steroid at the site.

The site is the ischial spine.  If the anesthetic took my pain away, it would indicate that the pudendal nerve is involved.  If they steroids work, they will take 1-2 weeks to kick in.

The anesthetic took away about 90% of my pain.  The remaining pain seemed to come on as my bladder filled.  Dr. Howard told me that pain in the urethra and bladder usually point to interstitial cystitis.  After observing my bladder pain while numb everywhere else, I think it's a good guess that I have IC.

But anyway, yay, 90% of my pain gone!  That was fun.  In fact, I was able to poke at my very low abdomen -- where my bladder is -- over and over.  If I pressed hard enough, I could feel some pain in my clit/urethra.  But I had to press.  At my appointment with Dr. Howard, just the light scrape of the wooden end of a Q-tip over my lower abdomen made my clit/urethra hurt.  Ridiculous!

Having a numb everything down there is strange.  It was like novocaine: you don't feel nothing; you feel an area that you can't feel.  My balance was different.  Then as the pain crept back, I realized how much the anesthetic had reduced my pain.

I go back for 2 more nerve blocks and then see Dr. Howard.  If these blocks don't help, it could be that a nerve block in my genitofemoral nerve would help.  That would be in the abdomen.  Given my super-sensitive abdomen, maybe that nerve is involved as well.

Super-sensitive abdomen, by the way, means flashes of extra pain when I cough, sneeze, laugh, jump, twist, fart, etc.  This has been a fun 6 years.  Ha ha :)

The Pudendal Hope site lists positive coping mechanisms for people with chronic illness.  Here is one:

Spirituality: You can be spiritual without being religous. Spitituality means worldliness. If a person is able to have some spirituality and/or faith/religion, studies have shown that this can improve a persons well being, attitude and good overall outcome.

This is the hardest coping mechanism for me to hold onto right now.  My spirituality has crumbled.  I don't trust anything.  Why should I?  I've been in pain for six years and my anxiety is astronomical.  Literally.  I'm worried about the stars.

I know a reduction in my pain will not make me stop worrying about the stars.  But I could use some damn relief just for the brain space.

The Funeral Rite

My uncle's mother died last week.  She was so light the wind might as well have picked her up and knocked her into a tree.  But she went by usual means, being old, the body wearing out.

She was a full-voiced woman despite her thin body.  Pictures at her wake showed her to be of beauty that is regal in its reserve.  In one picture, she sat on a sofa in a billowy gown made pink after the photo was developed.

My uncle's brother gave a bare-souled eulogy.  The pallbearers carried her out to the hearse, and we sat in our idling cars.  The snow was more like mist.

We took surface roads for a while, then we got on the expressway headed east.  I swore.  I was the last car, the flashers on my hatchback frantically warning people to get out of our lane.  Cars and SUVs ran up and slid around me in the slush.  I swore more.  I swore at the woman ahead of me, her spine too collapsed for me to see her past her seat.  I told her she was driving too slowly, that she had to keep up because I didn't know where we were going.  I put some music on to camouflage my swearing inside of singing.

Finally, after miles, after arriving in an outermost suburb, we turned off into the cemetery, its gravel path soaked with winter.  By the time I got out of the car, the casket rested on its support.  We walked up the grass, across headstones we couldn't see under the snow.  The pastor said a few words, very few, the temperature below freezing.  He asked the family to lay their flowers onto the casket.  Beautiful roses dropped onto the lid, some pink, some a perfect white.  I wanted to stare at the white flowers, but we, the more distant relatives, we went back to our cars to give the family a moment with their matriarch before she went into the ground.

Why aren't we carrying her?  Why aren't we carrying her festooned casket down the street, bells ringing, people chanting, ourselves dressed in our brightest colors, why aren't we putting her on a funeral pyre, why aren't we dancing to reach the gods and ask them to receive her?  Why haven't we put food in her casket?  Why aren't our bodies painted -- why do we have no song?

I wondered in the car on the way to the cemetery -- how do I require dancing at my funeral?

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Linking up with Yeah Write again this week.  Click thru to read some wonderful blog posts!  Return Thursday to vote for your favorites.

 

The Nerve Block

My nerve block is scheduled for this Wednesday, March 6.  I didn't expect it to be so soon!  It's only a little over a week since I saw Dr. Howard.

This is the first time in my six years with vulvodynia -- pudendal neuralgia, I should say -- that I've felt medically illiterate.  Here's what I think will happen.

Dr. Westesson will do the procedure.  He will use a CT scan to identify the Alcock's canal -- and I think something else too? -- where he will first inject a numbing agent as a test to see if my pain is coming from there.  If he is certain that the injection site is the source of my pain, he will then inject a steroid.

The steroid is the actual "nerve block."  It's supposed to reduce the swelling in the surrounding area.  That swelling is, theoretically, what's causing the nerve entrapment.

The numbing agent is like Novocaine.  I will have a numb pelvis for a while after the procedure.  The steroid will take several days to work, and my pain may get worse during that time.  But after a week or two, if all of this postulating is correct, the steroid will kick in and my pain will go down.

My pain might go down!

For the past few days I've been really nervous about the nerve block.  I haven't been thinking about it specifically -- I'm just more anxious in general.  But today I am a teeny bit excited to see what happens.  It's an experiment after all.  I love experiments.

If the experiment fails, the docs will do a nerve block on my genitofemoral nerve, which is in the abdomen.  At least I think that's what they will do.  It is Dr. Howard's second theory about where my pain is coming from.  I think it might be involved given the pain in my bladder and clit.  But the pudendal nerve can be involved in that area too.

And then if that doesn't work...  I'll just be back here trying to figure things out.  But now I have Dr. Howard to work with, and he is an expert-expert expert on pelvic pain.  I haven't ever had a doctor to work with.  They've all been specialists insulated from each other, unable even to refer me to another department.  So, I am finally in the proper hands, and I am trying to trust them.

The Practice of Writing

"It required a sophistication unavailable to me."

Toni Morrison said this about her first book, The Bluest Eye.

I have copied this line everywhere.  It is in my poetry journal so when I flip a page, there it is.  It's in a little picture frame on my desk at work.  It shows up on post-its and scraps of paper tucked into other things.  I carry it with me.

I have read no more accurate statement about what it is to be a writer who has big things to say and not yet the skill to say them.

The Bluest Eye is a classic.  Perhaps it would not be if Toni Morrison had not gone on to write Beloved and subsequently win the Pulitzer Prize and the Nobel Prize.  But alone, it is a book of potent, beautiful writing that tackles the complex issues of race and identity.  And the reader -- or at least I -- thinks the book tackles them successfully.

But Morrison herself does not feel the book is successful.  She sees, in retrospect, where the book falls short.  She sees what the book could've been if she'd written it in later years.

Would Beloved exist if Morrison had not first written The Bluest Eye?  Isn't every past work practice for the writing we are doing in the present?

There are subjects I want to tackle that I don't have the skill for yet.  My own spirituality, for example -- I've written pages of it, but how much of it is interesting or useful to another reader?  What is the purpose of sharing it if it doesn't bring some form of revelation to someone else's life?

Novels -- I have participated in National Novel Writing Month since 2003.  Of all those novels, three are worth others' reading -- I think.  But do I have the skill yet to complete them?  The one I'm wrestling with these days, I see the holes, I see the issues I don't know how to work into the rest of the story.  It drives me crazy.  In those most frustrated moments, I try to remember that I am practicing.

Poetry -- parts of poems riddle my notebooks, papers everywhere, and still I have trouble making them whole.  For me, poetry is the most difficult of all writing, and I think that's why I keep at it even though I feel I am constantly failing.  Again, it is practice.

And blogging.  Here I am practicing the art of blogging every day.  I have drafts left unpublished behind the scenes -- unpublished because I know they are not useful for other readers.  Do I have the skill to make them into posts worth others' reading?  I can tell that they are not useful, but I can't always tell what they are lacking.

The sophistication Morrison mentions -- I'm not sure I even know what it is yet.  But as I write, I must believe that I will eventually see how she could have improved The Bluest Eye.  I will have words to explain why The Bluest Eye is lacking instead of just that instinct we all have that senses when one book is better than another.

I must trust that someday, with enough practice, I will have the skill, the sophistication necessary to tackle those big things that I can't say yet but that are important enough for me to hold onto.

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Linking up with Yeah Write again this week!  Click through to read others' blog posts!!

One Lovely Blog award

Bee, whose lovely blog is Living Off Script (and who also has another blog, where she writes fabulous fiction), has given me the One Lovely Blog award!  My duty now is to write 7-15 facts about myself and pass the award on to five other bloggers.

And none of these facts will have to do with vulvodynia!  But some may be repeats from the blog.  Like...

1. I am obsessed with the Terminator movies and will someday be buffer than Linda Hamilton.  I've been saying so for years but my chin-up ability goes up and down (from 1 to 3) as I don't have a lot of stuff to chin up on.

2. I have synesthesia, which is a duplicating of the senses.  So if I see something, I hear it and feel it; if I feel something, I hear it and see it; if I smell perfume, the entire room is pink, etc.  Yes, it is cool.  2 is yellow.

3. I just learned that there is an actual thing called Grammatical Pedantry Syndrome.  I used to be a grammar stickler, but in recent years I have stopped caring.  My un-pedantizing started when I learned that the Dutch pluralize some things with apostrophe-S (radio's) to preserve pronunciation.  So there is precedent for the logic, even if not in English.

4. I have been trying to write outside the v-blog more lately and it is giving my life a center.

5. I leave my wallet at home a lot, so I recently bought an iPhone case that holds my driver's license and debit card because let's face it, our phones might as well be implants.

6. I've been wanting to chop my hair but it hasn't been shorter than shoulder-length since I got a helmet cut as a four-year-old.  So please, tell me to chop my hair.  No don't!  No, please do!  No!!!!

7. After work the other day, I wanted to wash my face before I left, but there wasn't anything besides hand soap available.  So I made some green tea and washed my face with it, and my skin was sooooo soft afterwards.  Recommended.  Sometimes improvising works!

8. I can hear foghorns on the Cuyahoga River from my house.  It is a tantalizing experience.  (The Cuyahoga River, by the way, does not light on fire these days.)

9. Eight is a good number.  It is a dark-blue old man.  So I will stop at 8 with the facts.


Here are five lovely blogs:

Gluten-Free is Life by Kim - she writes about her & her son's lives with celiac disease (and she is my cousin!) (her son is (unbelievably) a teenager now).  Read her blog for all you need to know (and I mean ALL; she is an expert) about eating healthfully and gluten-free.

The Fons Four by Kelly - she writes about her life with her two (adorable) boys and her husband (and she is my cousin too!).  Read her blog for beautiful pictures and the story of a strong woman.

That Cynking Feeling by Cynthia - she writes about her life as a mother whose (adorable) son has autism.  Read her blog for some terrific writing.

Feminists with Female Sexual Dysfunction by K - she writes about her experience with pelvic pain and analyzes it deftly through the lens of feminism.  Read her blog for insight you won't get anywhere else.

Abide by Lydia - she writes about her time teaching at a small school in Miami's Little Haiti.  I doubt she reads my blog, but her blog is so worth the read!

See the side bar for other lovely vulvodynia & pelvic-pain blogs!  Most of those were updating pretty frequently when I started blogging, and all of them could've received this award.  If you have a blog or know of one that's not in the sidebar (and admittedly I have failed to add some blogs), please let me know!