Sunday, June 30, 2013

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.

Wednesday, June 19, 2013

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.

= = =


Thursday, June 13, 2013

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

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!"

Wednesday, June 12, 2013


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

Monday, June 10, 2013

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.

Wednesday, June 5, 2013

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!