Thursday, December 17, 2015

New pelvic pain article, best yet

My cousin linked me to this article about pelvic pain.  It is the best I've read yet on pelvic pain but reading about pelvic pain always stresses me out and now I'm having a minor panic attack.  Deep breaths...

So tired of this.  Meaningless to say "so tired" after more than nine years.  Amazing I can even feel that I'm tired of this.  I must remember what it's like not to be in pain all the time.

Sunday, November 8, 2015

Probiotics & Pelvic Pain

An anonymous commenter left the following comment on a post I wrote about the probiotic VSL #3:

<<

By the way I am male and have had similar issues from taking CytoFlora, which is a tincture of lysed probiotic bacteria. 

I have always had pelvic muscle tension, and it requires internal physical therapy (trigger point / myofascial release) to keep it under control. I overdosed on CytoFlora one day and could barely walk within two days. The effect persisted a long time until I saw the physical therapist. It has happened to me now three times over the years. I can't say I have ever come across anyone who knows why this can happen.

I think that the junction between the colon and the rectum, right at the second fold of the rectum, is connected to the pelvic floor in ways that the PT literature doesn't describe. I think that the colon is tense (due to some unknown reason related to how much probiotic you took - VSL3 is very strong stuff), but as it is involuntary, I think the symptoms of trigger points appear at the boundary of the involuntary and voluntary muscles, which is right there at the second fold (I think). That is my theory.

The funny thing is that for me, at a smaller dose CytoFlora is the only thing which actually reduced my pelvic muscle tension issues - yet at a larger dose it magnified them considerably.

I would say if anyone offers you a specific cause as to what's happening in your colon why you are experiencing pelvic muscle tension from VSL3, take it with a grain of salt. They probably have no idea what is going on in there.

>>

This is the first good explanation I've heard for the increased pain I had when taking VSL #3.  And if it or something like it is at work in pelvic pain, the implications are huge.  If pelvic floor muscles are sensitive to the state of the rectum, it could explain why so many who have pelvic pain find that food is a major pain trigger.  It could explain why pelvic pain and IBS have such a high rate of comorbidity.  It could even explain why pelvic pain often goes up before or with menstruation.

The rolling theory (in my head, anyway) has been that IBS and other digestive issues can influence pelvic pain either by causing the individual to clench pelvic muscles in response to digestion or by referring pain to the pelvis (maybe via some kind of regional inflammation).  But if there's a specific point in the digestive tract that tenses under certain circumstances and pulls at the pelvic floor involuntarily, that would explain why it's been virtually impossible for many of us to identify the exact cause of our pelvic pain.

This makes me want to go back and do some crotch dieting again.  Nothing I've tried so far took away my pain in any certain way.  The best I did was on a simple diet which I apparently managed last in 2009.....!  Oh my god!  It is time to BELIEVE again!  I need to read my own blog more often. :/

I also want a colonoscopy.  I want a colonoscopy, people!

Friday, October 2, 2015

Happy birthday, vulvodynia

This is how living with vulvodynia feels


I'm finding it hard to deal with vulvodynia without blogging. I live alone so I can't turn and say OW when I want to be heard. I can't talk about it openly most of the time when I'm not alone because I'm rarely in private, one-on-one situations. When I am, silence comes over me about it. I don't want to complain, I don't want to make it all about me, I don't want to bore, I can't explain it all so it makes sense, etc. And I absolutely suck at reaching out for support. I'm introverted, and I've always been a private person in some respects. You can't tell by how my cooch is all over this blog, I know.

So I'm feeling more and more alone inside it because I'm not talking about it anywhere. I have to keep blogging or keep sharing in some way because this silence is exhausting. I'm starting to feel like I don't exist.

Monday, September 21, 2015

Tinker's Creek

I am a girl. Appropriately, I throw like one.

I pick up rocks along Tinker's Creek and throw them upriver. I try to get them past a large rock in the rapids, "the goal." I make one goal. Appropriately, it is with the smallest rock.

I trace in my throw the shape of my brother paused in a photograph. He is a boy throwing a rock into a lake, his hand at the top of its arch. "Look how perfect," my mother said to me as we looked at the photo. The form, the balance of his body. I try that now at 35.

I pick up handful after handful of rocks. Appropriately, I am wearing a skirt. With each bend, I moon the steep wall of rock that is the river's opposite shore. I throw the small rocks at the big rock. I am getting better, but still some slip from my hand straight into the river. The wall lets loose some of itself, more gravel for the riverbed.

I switch to skipping rocks. The sun is low. The big rocks make big splashes, make rainbows in the air.

I sing Taps---

Day is done
Gone the sun
From the lakes
From the hills
From the sky
All is well
Safely rest
God is nigh

---but the river carries on at the same rate, at the same volume. Had a human this fervor, she would be sick. But the river, it is at rest. This is it at its point of rest.

Thursday, July 9, 2015

Signing off

The hair that fell out of my head from all the steroid shots is back. When it's down, it's in cute little curls, like Audrey Tautou minus the face. But it doesn't stay down. It mostly does this.


It looks like the wind is blowing, but I promise you, it needs no wind.

There's been no change in pain since I started the IBS med.  But I am only taking 2 pills a day right now.  I can take up to 4 per day but they have to be 6 hours apart which goes against the recommended daily allowance of 8 hours of sleep per night so I've been writing to Stephen Hawking about how we need better math.

I quit my desk job to go back to serving full-time.  I've been thinking about going back to serving for over a year.  It never made financial sense.  I had very little breathing room in my budget and a lot of debt, student-loan debt from a graduate degree I never finished and credit-card debt from car repairs and medical expenses.  I got a weekend job at a restaurant back in August and funneled all my extra money toward my debt, which alleviated a lot of stress.

But in late winter I started funneling all my extra money toward my savings.  My office's situation seemed tenuous.  Then my cat got sick.  Hundreds of dollars were flying out of my pocket to figure out what was wrong with her.  So I quit my day job.

While I could manufacture 7,000 reasons why I had to leave my office job because my cat was sick, the real reason is that it just didn't feel right to stay.  I had been working seven days a week between the two jobs.  My office job was never going to be a career for me, and I was staying there because I was too scared to make a leap back to full-time serving.  That fear fell away when I didn't know whether I was going to lose my cat.  When I was waking up multiple times a night to get to her with something disposable before she puked.  Everything fell away.

I took my cat to a second vet after an initial diagnosis of hyperthyroidism because I had a feeling her normal vet wasn't being very thorough.  (A little birdie high-school-friend vet in Chicago wasn't convinced either.)  The new vet said, indeed, the first vet wasn't being very thorough ("stupid," she said).  She had me try to figure out why my cat was still puking on the thyroid med -- from the med itself, from the pill pocket she took with the med, etc.  When no changes I made seemed to work and my cat puked four times one morning and I had to work at the restaurant, my dad came over to cat sit and my vet met me that afternoon, on a Sunday when she was closed, to take blood to confirm that the main problem was still hyperthyroidism.  She gave me food for hyperthyroidism, told me to take my cat off the thyroid med completely, and gave me a med to treat nausea if needed.

The first vet had told me there is no dietary remedy for hyperthyroidism.  As this blog has shown...

doctors vary.

Well, puke puke puke, I started giving my cat the nausea med every evening.  Somewhere in there was my last day at the office.  Then, at the vet's suggestion (via email; very modern, this senior citizen), I kept my cat on the med until it ran out.  It's been a few days off the nausea med and of course it's scary to say it, but she hasn't been puking.  And she's gaining weight.  Her face has filled back out (which I can apparently tell despite all the fur).  Her appetite and behavior never changed, so it was as if I was the only one going through all the craziness and she was just puke, eat, puke, eat, run around, jump, I'm a cat, puke, eat, birdies!, birdies!, snooze, purr -- it was so strange.  It's still strange.  I put her food next to my bed so I can monitor her and it stinks to high heaven but it's a delight to see her eat.  A gorgeous sight, like that Cure song says.

It gives me a lot of respect for people who take care of others hand and foot, like my grandma did with my grandpa.  She did essentially what I'm doing for my cat except she did it for years and years and years and years and years and my grandpa lost almost all of his mobility over that time.  He stopped even noticing the human equivalent of birdies! at some point, and it all turned into snooze.  With it came dementia, in which my grandma sometimes became his mother.  In which it sometimes seemed he was dreaming, the house growing floors around him, the Ohio River right outside the door.  I can't imagine what it's like to watch your life partner decline like that, to be the one to force him to take his pills, make sure he eats, weigh him back down to reality, all functions of a nurse and very few of a wife.  But her hand smoothing his hair down, one finger bent from arthritis -- the wife.

I'm still looking for a second job, and I still have to figure out a new medical plan (via the Obamacare marketplace).  And right now, I don't ever want to see a pelvic pain doctor again.  I am so, so, so, so over it.  I am so done.  I am so done that I'm surprised I haven't broken all of my possessions in the process of being HULK SMASH done.

I guess I feel like I'm fighting fate at this point and I need to give up.  Here I am after 8.75 years with pelvic pain, every theory I could muster, doctors I can't number, and treatments upon treatments that have nothing to do with one another.  I've taken jobs, quit jobs, gone off and on psych meds, been single, been in a relationship.  I've dwelt in all four houses asking questions, mental, physical, emotional, spiritual.  I've done more research than I can stomach.  I've been writing this blog for almost seven years.  I've made many friends through it, all invaluable.

I guess when I started this blog, I thought I was writing toward the end of the story.  Someday it would arrive.  I'd be all or mostly pain-free, and it'd be a big happy time for me and for people like me who needed the data I'd gathered.  But while I made some progress a few months ago with nerve blocks on the left side, all attempts to address the remaining pain have failed, and the remaining pain is no less a monster.  Now we're treating my pain as if it's coming from my intestines, which is a fine theory but nothing new.  It's cycle 3 or 4 of the gastrointestinal theory.

If I could, if I had the resources and the liberty, I'd go on a massive vision quest.  I'd hike the Appalachian Trail or drive to every state in the country or kayak from Pittsburgh to New Orleans.  I'd go long enough and with little enough to forget everything and find new eyes.  But right now, it doesn't make sense.

Instead, my gut is telling me to do the same quest while standing still.  And in order to do it, I have to let everything go.  I have to let hope hang by itself, unmoving.

I might be back.  Til then, here's to great storytelling.

Friday, June 19, 2015

IBS IBS IBS IBS IBS

When I was in college, I had EXPLOSIVE DIARRHEA.  When you're a freshman with explosive diarrhea living in a coed dorm,

1) You think explosive diarrhea is totally not abnormal and don't go to the doctor;
2) You instantaneously train yourself to hold in explosive diarrhea until
3) The floor is entirely quiet because, you convince yourself, everyone is at class or having quiet but distracting sex;
4) You go to the bathroom and explode diarrhea out of your body;
5) And after some time, you learn how to explode diarrhea out of your body without making a sound.

I was pooping out water.  I don't know why I didn't go to the doctor.

Over time, I figured out my diarrhea triggers: soft drinks, coffee, fried foods, fatty foods, beer, chocolate, candy, Wheat Thins.  I could eat a single Tootsie Roll and have to run to the bathroom.  I avoided those foods, and my bowel issues got better.  At some point I figured out I had irritable bowel syndrome.

By the time I was in my mid-twenties, my IBS had become mostly constipation.  I ate high-fiber cereal, and it only backed me up.  When my vulvodynia started in late 2006, my cousin Kim had already gone gluten-free as she and her son have celiac disease (here is her blog).  So about 7 months into vulvodynia, I stopped eating gluten.

It helped.  I started pooping better and my headaches went away.  I had been napping most days for hours, and that stopped too.  And my vulvodynia improved a smidge, probably because there was much less going on in my abdomen in general.

Today I saw Dr. Abdelmalak again.  I went in with no news to report.  For like two seconds after my last right-side genitofemoral block, my pain got better.  But it expanded again, and I decided I needed to hammer home with Dr. Abdelmalak my observation that food is a major contributor to my pain.

I thought Dr. Abdelmalak would suggest another nerve block or another attempt at cryoablating the nerve.  But instead, after some discussion and an examination of my abdomen (pressing it all over) and finding that my genitofemoral trigger points are not so bad right now, he decided to focus on IBS.

A-ha!

It was kind of strange.  We talked a lot about pressure to the lower abdomen -- how if I cough, sneeze, laugh, when my bladder fills, when I move, when my cat steps on my belly, how with any added pressure my pain gets much worse (when I am having a bout of laughter, I find myself contorting to relieve the normal downward punch of the laugh.  It's kind of awful, but laughter is so wonderful).  And from that conversation and a quick question about "alternating diarrhea and constipation" -- "Yes, I have IBS" -- he decided to put me on Bentyl, a med that treats IBS.  (As a side note, to add TMI to TMI, I can feel gas moving across my lower abdomen, centered over my pelvis, because it presses down and shoots my pain up.  Previous doctors have told me that my bowels don't go that low and that the constant pain I had in my lower left side while still eating gluten was my period, not my bowels.  Ha!  Screw you!  I know what my period feels like, dingbats!  I wish I could write condescending letters but I don't even remember the doctors' names.)

As in college, treating my IBS outside of avoiding food triggers has never occurred to me.  I knew about Bentyl, but I was always like, "That's for them."  I don't know who them is if it's not me.  Maybe my explosive diarrhea never seemed to be a serious problem -- after all, it wasn't dysentery.  And maybe not pooping for a week (or two when on Effexor) seemed more a medical marvel than something to address.

Edit: I remembered where I remembered Bentyl from.  I was actually prescribed it years ago by a gastroenterologist.  I wrote about it on here on a post with a nasty title.  It was at the outset of my Summer of Despair, after which I gave up on seeing doctors for a while.  I don't think I took any of it.  I think I was too deep into the mental state with which I chose the title of that post.

I'm to take Bentyl up to 4 times a day (every 6 hours), and Dr. A says it'll take a few weeks to start working.  Alongside Bentyl, he prescribed something I've always thought I should have -- a muscle relaxer.  OMG!  I'll only be able to take it at night, but I'm interested to see if it has any effect on my pain.

And then I walked away with my paperwork.  I've heard a few elderly people say, "Don't get old."  I always think, well, I'm already in pain all the time.  I get that more things happen in a person's later years, but I feel stuffed up on medication as it is.


And I have a hilarious list of issues, some of which seem redundant, some of which I thought I didn't have (manic-depressive NEC; I thought my doc and I decided it's not accurate for me, and I had to google NEC, and it seems like it's the same as NOS, not otherwise specified, but I have no idea why there's a different term and why it's "manic-depressive" and not "bipolar disorder," and my anxiety should be "MFing anxiety," not "anxiety state NOS"; listen up, I'll tell you how to specify it: it's a MFer) -- and some of which aren't listed (cluster headaches, arthritis of the hip, even IBS).


These lists made me laugh.  If I live out my natural lifespan, it'll be hilarious to see how long these get.  I think my grandpa was on 7,000 meds when he died and probably had 40,000 items on his "Problem List."  He died the day before his 92nd birthday.  Life accumulates.

Friday, May 15, 2015

Post-block-again-update-pain title

Okay, so, my period is over, the yeast are back to their normal subsensory squirmy existence...

Mmmm!

And my pain is back to a lower-than-usual level.  I don't have the burning I had on the face of my vulva when I was trying to kill the yeast using methods meant only for normal vulvas.  Vulvodynia does not like Monistat, nor does it like even the tiniest drop of tea tree oil, which is not normally a bad method for fighting yeast according to the ultimate guide to yeast infections.

I think my skin's overreaction to topical treatments (even lidocaine; I need the compounded version) means there is some idiopathic vulvodynia going on, something that is inexplicable.  Maybe it's driven by neuralgia, but I think it's just stupid undefined stupidity that a lot of women have that is undefined and stupid.

My pain still doesn't like most foods, and it's not thrilled with sitting, and it doesn't like moving around, and peeing is still painful.  But it's better by a degree or two.  Wait.  Wait here.

I went to the bathroom and punched my stomach a lot.  The site where the doc gave me the shot is really really sensitive.  Two weeks later?  And the general area on each side of my bladder/uterus/whatever, the pantyline but spread inward, is really sore, as usual.  Those are the genitofemoral trigger points.  But poking everything didn't radiate pain to my vulva, which is good.

I feel it's important to remember that my pain STARTED as pain just below my bladder/above my clit/however you want to put it, and it included increased pain with peeing that would RING and RING and RING for a half-hour or so after peeing and then die down.  And moving was problematic.  In other words, maybe getting rid of the pain means moving back through the stages of pain I've had.  Peeling off the layers down to the start of it.  Because it has certainly gathered more and more pain-fluff around itself over time.

I can't give up peeing, and I can't stop moving (well, if I want to get paid), but I can stop sitting so much and I can keep eating carefully.  GOD EATING CAREFULLY IS SUCH A BITCH!!!!!!!!!   I can't eat fruit anything (bananas are okay) or tomato anything or spicy anything or sugar anything or coffee or tea or chocolate or anything!!!!!!!!!!!!!!!!  Gluten-free is NOTHING COMPARED TO THIS SHIT.  I wrote my doctor a note on MyChart telling him DUDE YOU NEED TO LSITEN TO ME WHEN I SAY FOOD IS BAD (minus caps, typo, "dude," and anger).  I don't know if there's anything he can do to help except tell me not to eat things that hurt... THIS DIET IS RIDICULOSU.  I really don't think I have interstitial cystitis but my pain is so sensitive to food that I feel like there must be a connection.  A lot of people with pelvic pain report that their pain is sensitive to food.  WHY WHY WHY WHY I'm not editing this blog post.  It sucks but this is the only place I write down crotch shit and I've gathered that seeing someone else freak out about her crotch helps other people with crotch problems.  THIS IS ME FREAKING OUT!

Tuesday, May 12, 2015

Hope sucks

My pain was better for a bit and now it's back to bad, and it's clear that food is the worst thing ever invented by man.  Eating makes everything worse.  I'm so exhausted by all this.  Hope is the most exhausting thing ever invented.  I am so tired of it.

I can't believe I have this pain.  It doesn't seem real.  It seems like I should be able to think myself out of it.  Like when you're in a dream and you die and you're like "Okay, let's say I didn't die" and you're not dead anymore.

I am running through Duolingo.com brushing up all my French categories and today I had to translate "La tortue est verte" -- the turtle is green -- and I realized it's been a long time since I thought about how turtles are green.  I know it's a grownup thing, that more items populate the mind and we don't care what color turtles are anymore because we know they're green, it's a fact, we're done processing it.  But I don't want to stop thinking about how turtles are green.  That seems like the most important thing in the world.

It's sensory.  "The turtle is green" is a way of saying there are a billion things to sense besides pain.  It's just hard to sense any of them when you're in pain.  And after a nerve block, all I do is monitor my pain.  There's no other sensation that matters.

I don't want to keep doing the nerve blocks.  It's much easier to be in pain than to keep hoping for the pain to stop.

Wednesday, May 6, 2015

Post-another-shot post

I'm hella depressed.  These shots always stress me out, but I always forget how much.  And other stresses are adding together to make one big pile of Netflix.

My pain has changed.  In fact, it's changing all the time.  I have some burning, but I think I also have a yeast infection.  (TMITMITMITMITT.)  So I can't tell if I really have burning or if I just have a party.  A party I've tried to douse with things that burn so bad (Monistat) that I can't keep using them.

There's this thing out there called YeastAway or something stupid.  It has boric acid in it along with other less proven yeast remedies.  And it doesn't burn.  And I have to find it but you have to keep it in the fridge so I have to go to the places where they keep things in fridges but all those places are much farther away than depression wants to drive.  Well, I went to one.  And they only had regular probiotics.  No YeastThingThatGoesInTheCooch.

The good thing about YeastWhatever is that I rarely have to use it more than a few days.  So I keep the leftover things in my fridge until beyond when I probably should and use them whenever I feel yeasty and so far I haven't started any new species that I know of.

I think Amazon carries it.  Maybe one of these days I'll check.

The other change in my pain is that, like, imagine there were a rod poking through your clit and into your bladder.  And as you move around, that rod zings and pinches and zaps you.  But if you don't move, you can't tell the rod is there.  This pain isn't new.  I've had pain with movement all along.  It's just extra-zingy now, and it's also extra-focused.  It used to be spread all around in three dimensions and now it's essentially one-dimensional pain.  And I don't know if it's like this because other parts of my pain have peeled back or if it's a new and maybe temporary phenomenon caused by the nerve block.

Once my crotch recovers from the Monistat burn (tried it again this morning, duh duh duh duh duh, it's like I tripped and sat on my iron for a minute), I might be able to tell what's going on.  In the meantime, I'm going to try to leave work right when it's time to leave instead of curling up on my desk to take a nap.


I have been taking a nap at work after work for months.  Not every day.  Just a lot of days.  For a long time I was curling up on the floor and then one day I was like, the floor sucks!  It's 0.125" of carpet on top of concrete!  I'm sleeping in this 42" space instead.  And it works.

Friday, May 1, 2015

Nerve block #83747474838229

I posted this on Facebook today:

Some cultures are superstitious about the number 4 because it is a homophone of "death" in their languages.
Yesterday I had the 4th right-side genitofemoral nerve block that immediately took away my pelvic pain.  But none of the 3 previous right-side blocks have resulted in continued relief of my right-side pain.  And while my left-side pain is still low, the right side turns out to be the main dragon down there.
What that means medically = a lot of big words.
What it means personally = we die & are reborn many times over the course of our lives.  These years of pelvic pain have seemed to be cycles of death without rebirth.  Every time I think I have finally completed a cycle of death, I resuscitate to something that is not quite life.  The pain is still there, and I am still in every moment managing it while carrying out the actions of a living thing.
Let 4 be worthy of superstition.  Let it be synonymous with death; let my pain respond to the steroid this time and, if complete relief is impossible, let it at least lessen to some degree.  Give me space to forget once in a while that I have pelvic pain.  Moving around yesterday while the lidocaine was still in effect, I remembered how easy it is to get off the couch, to step over the cat, to do all the daily functions I force my body through.  I am willful; I am proud; I do things my pain doesn't like because if I can't kill it, I can at least tell it to fuck off by ignoring how it whines.  Maybe I should be more careful with it, but I am too angry.  If it is a dragon, I am one too.
If I manage to kill my pain someday, I don't know what my life will look like.  Pain and anxiety are by now my life's ballasts; I don't know if there is anything else holding its shape.  If I crush both, will I fly up like a feather?  How will I reconstitute into something stable and alive?  If I don't look to the other side, where I am rid of these things, will they ever leave me?  Are they still here only because I am too afraid to let them go?

*

I just want to add a few notes.
- This is actually right genitofemoral block #................ 7? But only 3 previous right genfem blocks caused immediate pain relief.
- The skin at the site of the nerve block was still numb this morning, and even tonight when I removed the band-aid (I always forget to remove them) it felt numb in a subtle way. I think the doc numbed the site extra extra extra well this time as I can usually feel the nerve block needle poking around and the actual block usually hurts as a consequence. I couldn't feel it at all yesterday -- just the slight pressure of it moving into place. The doc, as usual, let me watch the needle move around on the ultrasound screen as he injected the block. I think it would make some people sick, but it calms me down.
- The site of the block has, at the same time, been very sore all day, and it seems to be getting worse. I'm watching for infection. The pain is mostly with movement.
- Peeing this morning was still mostly pain-free, but shortly after I got out of the shower, my pain shot up like a firecracker. It's been up and down all day. The pain is still almost entirely on the right side.

I'll keep you posted about progress.

Thursday, April 30, 2015

Monday, April 13, 2015

A sort of PTSD

I mentioned in passing a while ago that I feel like I have a sort of post-traumatic stress disorder about my pain.  I don't know if PTSD is the right category for it, but it goes like this.

A couple weeks ago I developed a UTI.  My pain grew over a few days, and I didn't think it was a UTI at first because I've gone through flares like that before without having an infection.  Then I went upstairs to pee while working at the restaurant, and I could hardly walk back down the stairs afterward.  Back on the floor, I teared up, half because I was in pain and half because I was so pissed off at being in pain.  The other servers let me go home early.  I knocked myself out with gabapentin and slept.

The next day, I was okay at my office job, but that night I started having blood in my urine.  I was up all night and left my boss a message around 3 or 4am letting him know I'd have to stay home.  The pain at this point is invisible in my memory.  All I can remember are the effects of it.  That I was on the toilet a lot.  That I was scrambling for any medicine that might dull the pain.  That I could hardly feed my cat because moving was so difficult.

I asked my mom to bring me UTI test strips.  The test came back as usual, leukocytes but no nitrites.  Nitrites are a sign of bacterial activity.  I figured I was just in a bad flare and I'd wait for it to pass.

My mom also brought me pyridium, which eases pain from UTIs.  It helped.  I took cranberry pills just in case.  At the end of the day, I felt like the pain was going away.  I relaxed in bed, had renewed confidence against the pain, slept easily.

I woke at 3am out of a dream where my pain was a woman crying for me to act.  I ran to the toilet, and in the dark, all the orange from the pyridium looked like blood.  Maybe there was also blood.  But it is good that my urine was any color but normal.  I forced myself to shower, took my cushion in my car so I had a chance at driving, and went to the closest ER.

I was the only one at the ER.  Everyone who talked to me was a man.  I realized I'm not used to telling my story to men.  But it was as if "pelvic pain" was already in their language.  They didn't ask how or why.  I might've said something about neuralgia and how I didn't know if it was a UTI because the pain can get so bad without one.  The doctor said he'd treat me for a UTI anyway.  I made it to the drugstore.  I made it home.  I took the macrobid and went to sleep.

Over the next couple days, the pain went down.  But it still fluctuated.  When I had finished taking the macrobid and the pain was still fluctuating, my mood started flipping all over the place.  In the bathroom at work, I'd panic at the toilet paper, unrolling unrolling unrolling it, pressing my nails into the wall.  I analyzed the rate of change of pain as I peed.  If it got worse at the end, that meant the UTI was coming back.  I panicked at home and in the car and in the grocery store and any time the pain upped.  Running around the table chasing my cousin's son, a crackling fire.  I wanted to sleep forever.  I wanted to die.  Depression tugged me underground, weights on the line.

My period crept up.  I felt it all over my body.  It took forever and a day to arrive.  I kept saying the pain was because my period was coming, but my period wouldn't come.

Now it's here, and the pain is normal, and I realize how terrified I was for days and days, someone hammering nails into my bones.

It's been like this the whole time to varying degrees.  Always fear.  Always fear that it will worsen.  I have no trapdoor.  No vicodin or tramadol or anything of the sort.  No escape valve.  The only thing I can do is knock myself out beyond sensation with gabapentin.

With chronic pain, you're always thinking about what's next.  Vigilance.  The leopard prowling in the dark.

And one of the things I hate about it most is being alone.  Driving to the ER alone.  Being on the toilet alone.  Crying alone.  Having no hand to hold.  Being at work unable to say it.

I have lots of support.  But there is no one always with me.  I have no one at home but my cat.  Sometimes, when I've been at my worst, she has climbed onto my chest, curled her paws under her, and closed her eyes.  Like a leech siphoning it out of me.  And I lie open to her as the ocean to the sky.

Monday, April 6, 2015

Yogurt

Hypothesis: eating a giant bowl of plain yogurt short-circuits a flare.

Evidence: 3 confirming instances.

Question: whaaaaaaaaaaaaaaat?

I had a UTI, so I started shoveling yogurt in to stave off a yeast infection while taking antibiotics, and every time I've done a big shovel mid-flare, the flare has fizzled out.

Maybe this is a fluke.  I've definitely shoveled yogurt in before.

Standing here at work, hardly wanting to move because I overindulged in jelly beans and other bunny things at Easter, I chugged milk and nothing happened.  I almost never drink milk.  When I do, it's a pain reflex, like, reduce the acid or something.  I don't know.  Milk seems like it can fix pain, right?  Like it'll put out the acid burning my vulva.  But no, no.

So I shoveled in some yogurt because milk will give me a tummy ache and I'm still on antibiotics anyway, and now I'm sitting here hovering around a 4 pain-wise.  Maybe even a 3.  Instead of hot-burny, my vulva feels ringy-cool.  This all makes sense to someone out there.

I know better bowels mean less pain, but I've never observed a direct, near-immediate link between yogurt and my pain before.  Sugar and my pain, yes,  Immediate.  So.... yogurt is the anti-sugar?

Of course it is.  But immediately???????

Whatever.  Now that my birthday's passed and there are no candy holidays until Halloween, I'm off sugar.  Honey and maple syrup are still okay unless I find that they trigger me (mixed evidence).  Most fruits are not okay.  So I will be feeling better just from that change.

This is the end of my very quick blog post that is the equivalent of running up to all my vulvodynia friends and shouting my new amazing news!  Unfortunately, I have no in-person vulvodynia friends to run up to.  Hi out there!

Wednesday, March 18, 2015

I have to eat better

Yesterday before and after my doctor's appointment, I wanted to die.  I wanted the elevator to stop and no one to find me.  I wanted to find some water and sink myself in it.  It's not good to tell people you want to die.  They freak out.  But it is a common thought when you have chronic pain.  I've heard countless others say it.  So I might as well write it here.  If you have chronic pain and want to die, you're nowhere near alone.

By the time I had driven to Target to get my refill and sat in my car in the parking lot for a while listening to Ace of Base, I didn't want to actually die.  So I decided I would pseudo-kill myself.  I went home and jammed ice cream, Cheetos, white-chocolate peanut butter, and wine into myself.  It turns out not to be a lethal combination, even at high doses.  Even coupled with chick flicks.

Of course, my food choices were not random.  All of those things (save maybe the Cheetos, but I did eat the whole bag) are bad for my cooch.  Murderously bad.  It was an act of vengeance, all of that food and wine and chick flicks.  A torture.  Don't tell me that I can't torture my cooch without torturing myself.  I mean, of course I can't.  But it's sort of like self-flagellation.  I was whipping the part of me that is awful.

So today at work it's don't-sit-down day.  Don't-eat-wrong day.  Don't-not-pee, don't-not-drink-water, don't-pee-too-often day.  Don't-listen-to-that-Nora-Roberts-book-you-have-checked-out day.

Yesterday, my doctor said I am one of his favorite patients.  Yay!  Because I ask questions and I read about my problems and I do what he says... wait... my mind hopped over to food, the main thing I haven't been doing to improve my pain.  I haven't directly disobeyed him because he doesn't believe how much food influences my pain and so hasn't given me strict dietary orders.

So it makes sense that I went home and tried to kill myself with food.

I have to eat better.  I have no willpower.  I suck.

I have to eat better.

I have to eat better.

Eating better won't cure my pain.  But coffee, sugar, chocolate, wine, alcohol in general, spicy food, acidic food, these are all acts of vengeance every time I engage them.  I can't predict exactly how my body will react, but it's like swallowing a spoonful of some radioactive substance and hoping the atoms don't decay before I poop them out.

I know that self-injury is part of why I don't eat better.  I hate my pain, so I eat as if enough bad food will suffocate it.  I did this in my last relationship, having horribly painful sex as if I were a wolf raising my hair and baring my teeth.  It is all irrational, and I think it's quite normal.  I'm acting out my hatred.  I'm being human.

I know I'm getting better.  When I'm not in a flare from food, the left-side pain is so low as to be invisible.  The right side still flares by itself, and it still packs a gigantic physical and psychological punch.  But I want to be a good patient.  I want to give these nerve blocks the best chance for success.

The nerve block I had in my hip a few weeks ago did nothing for my pain.  Not even my hip pain.  So yesterday, my doctor examined my genitofemoral trigger points again and BAM, down the pain shot from the right trigger point to my vulva.  I'm going back for another right genitofemoral block.  This is the nerve we cryoablated.  It should have died.  It must die.  I will not try to kill it with food.  I will not try to kill it with food.  I will not try to kill it with food...

Thursday, March 5, 2015

Work

I know I am getting better.  It clicked in my mind, all the data.  I've told you it all already, but it wasn't until I gathered enough data over a long enough period of time that it clicked in my mind that I am getting better.

But I've been in a pain flare for over a week, and it is hard to keep my head up.

Sometimes I flash from another universe back into this body and I see my pain as if it's new.  It makes me want to sleep.

I thought I was out of the flare over the weekend, but maybe it was that I was standing.  I have been sitting at the office.  I am so tired that I don't want to stand.  But my pain rises and rises, and I think it rises over the course of the week.

I wrote this poem about it while at work.  I go to the bathroom and it is terrifying to pee, but it is also the only place at work I can show that I'm in pain.

Like a lightning bug
I stop my blink
and settle down to bed.
Still the day rolls
and the silence rolls
and there is not a scrap of shadow
to hide in.
I fold
like a moth
with no light to chase
and grip time and time and time
before the unfolding.
It is so bright here
and I am empty,
all white,
I am a starved belly
feeding on gristle
without a body
to hold it.
I settle
into soft ground
as if a weight greater
than my shape
and wish for the plunk
plunk of rain
to help me sleep.
I am a shell, a
beetle,
I cannot believe
how thin my wings
that crumple like tissue
inside me.
I cannot believe
they lift.
I am
an antlion.
I carve my cone
into the sand
and wait and throw
and digest.
That I am so tricky,
so clever,
is my distraction.

Friday, January 30, 2015

How

This article details the how.  How a life can tumble away from itself.

Julia Cameron, in her book The Artist's Way, suggests that God, or god, or "god," or the universe, has a pact with us about our creativity: if we take care of the quantity (the rate of creative output), god will take care of the quality.

Universe, if I take care of the present, please take care of my future.

I honestly have not been tending the present.

I have been whitewashing my past so its events look like guidance, rearranging it like it is all throw pillows on a couch.

I have been looking at a face fifty years from now, features grown subtle under soft flesh.

I have been flinching at forty, at what my life won't be because I've miscalculated my trajectory every time I've aimed.

I forgot, all this time, that half my life ago, I swore I wouldn't collapse around career, marriage, children.

I swore I wouldn't fold up all of my existence and measure it against three data points.

I didn't know then how difficult it would be to strike out alone and walk a course undefined.

Life gives us models to make life more efficient.

I feel like I have no model to follow.

I have to carve it myself and, like Michelangelo, chip away all the parts that are not David.

Wednesday, January 28, 2015

Carry my joy on the left, carry my pain on the right

Maybe I should've known, dancing my limpy dance to "Who Is It?" in my apartment in 2008ish, that Bjork's lyrics were a truth in my own life...

Carry my joy on the left
Carry my pain on the right



That's how my pain is now.  I get glimpses of how little pain there is on the left.  I know it best when I insert/remove a tampon and I feel pain only on the right.  I want it to be wonderful, but it is confusing.  The pain is still bad all the time even though it's smaller now.  I can't tell the left side is quiet because the right side is still so loud.

I can't look back on bad events in my life and see the good.  My last relationship, my time in college.  I only see the bad.  I wonder if the mind does it to keep the body from tripping again into the same situation.

I am dating, but if I sniff my ex-boyfriend in someone, I jump ship immediately.  It is probably better to do so, but I have never had such a primal aversion before.

I am dating a guy who is many good adjectives, but I am not swooning because I'm afraid I'm wrong.

Dating him is like trying to get a Rube Goldberg device started against a wind.  And I think it is because I am a chaotic pendulum, carving out a system predictable from above but not from inside.



I've always preferred night, but for several winters I've been terrified when the sun goes away.  That it will never come back.

My psychiatrist told me to take Vitamin D, that there's no point in getting a Vitamin D blood level because new research is showing that what is normal by lab standards may not be good enough for the brain, especially in winter.

"Are you going to take it, or are you just saying you're going to take it?"

I'm taking it.

My psychiatrist in college told me that there is little depression in Iceland despite their being so far north and it's because they eat so much fish.  She told me to take fish oil.

I'm thinking a bell dress would be a better antidepressant.

I would wear it all the time.  It's amazing the things people don't tell you.  I am getting better at not imagining what they might think.  Like how they might say to each other that I never seem to wear anything but my bell dress.  That my bells keep getting stuck in the janitor's vacuum but there is no bureaucratic recourse for the accidental dropping of bells from one's dress.  That they are convening a weekly meeting to amend the company's conduct guidelines to exclude bell dresses.  That their initiative has run aground when a kind-hearted soul likens my dropped bells to the pearl earring she lost down the drain in the ladies' room, requiring maintenance to disassemble the plumbing in that half of the building.  That they are now considering limiting staff wardrobe to items permitted to those under 5, i.e., to everything that no one can swallow.

That the head dinging is getting creepy.

I admire Bjork because she vents herself so efficiently through her art.  She shows me that I can vent efficiently too, that if I am worried about the sun I should scream that worry into the universe instead of reprimanding myself for being nonsensical.

That if I am a pendulum with two legs, I should relish being jerked around by my tether because my tether is the reason for my swing.

I have forever been a bundle of nonsense.

I believe sometimes that I am wordless.

I believe sometimes that my only language is the incessant whip of the nonsense inside me.

One more picture of the chaotic pendulum:

Graph of the time for the pendulum to flip over as a function of initial conditions.

Resemble much?


Tuesday, January 13, 2015

Arthritis

After telling 3948720375382750293843249208 doctors that I have hip pain and that my family has a history of arthritis, Dr. Abdelmalak said today that the pain I've had in my hip since my pelvic pain started 394820392845 years ago is from arthritis.

The good news is that my genitofemoral nerves are now calm.  We tried to find the trigger points at the appointment today and both the left and the right points are indetectable.  (Trigger point = poke lower abdomen >>>>> horrifying pain in my vulva.)  And the pudendal nerves, we're assuming, are still quiet.  I didn't ask him to "look" inside with his fingers to confirm.  Fuck the pudendal portion.  All of my pain is north of my urethra, so even if my pudendal nerves are still irritated, they are not at play.  Or if they are, it's the clitoral branch of the right pudendal nerve that's the problem, which is apparently hard to treat via injection.

Oh yeah, so my pain is mostly in the upper left quadrant if you're looking at a cooch with the clitoris pointing north.  Or on the front right side if you're me.  But there is resonant pain elsewhere.

So as I was poking around trying out my trigger points today, the part that hurt worst was along the right panty line, the point that I've told 3940223849320894839024893 doctors about.  So Dr. A folded my left leg up first and twisted it and I felt no pain in that hip.  He did the same with the right leg and that point pinched and spread along my leg.  And he said it's arthritis.

Despite 039480923890328493081948393 doctors and physical therapists saying that it couldn't be and 39248023990834 of them saying that as my X-ray didn't show arthritis, I couldn't have it.

Now I go for an intra-articular injection in my hip along the panty line.

Maybe this is why the anesthetic that went along with the right-side genitofemoral blocks made my pain go away.  Because it was broad enough to include the hip.  But the steroid does not affect such a broad area, so the results from the steroid weren't long-term.  And maybe that's why the diagnostic (anesthetic-only) block I had that almost eliminated my pain was also the one that knocked out power to my right leg.

And maybe this explains the weird swelling I've had occasionally on either side of the right panty line that 958049 doctors said was nothing because it wasn't a blood clot and I'm young.

And maybe this is why I have occasional all-over irritation around that hip.

And maybe this is why going on a four-hour hike has me dragging my foot up the stairs on the way up to my apartment.

And maybe this means I won't hike the Appalachian Trail after all.

And maybe this is why sitting for a long time or having my leg at weird angles makes my hip pain worse and makes my leg feel weak.

And maybe this is why certain leg positions give me more vulva pain.

And maybe this explains why food makes my pain worse but not consistently.  Because it's about inflammation, at least in part.

And maybe this means that if I had been a 60-year-old woman when my pain started, doctors would've looked beyond the vag 9348203984102 years earlier.

I always bitched that they were pigeonholing me because of my age.  Maybe I was right to find issue there.

I am glad I don't have pain shooting to my vulva from higher up my genitofemoral nerves.  That is good.  It sucks, BTW.

I don't know what this means big-picture-wise.  What the fuck is wrong with me that I have two sets of fucked-up nerves and a fucked-up hip?  Did the latter cause the former?

Is this why having a lovely night of sex for the first time in 300000000000000 years kicked off my pelvic pain 948502948529084290852 years ago?  Because my hip was doing things it wasn't used to?  Or did I injure it that night?  And my pain kept digging and digging as I tried to compensate for the injury?

Will all the psychosomatic parts of my pain fall away now, please, if they are present?  Like maybe chocolate actually makes my pain better and I was just fooling myself and I should eat as much as possible?

I'm not telling anyone when my next appointment is.  I still need people to ignore that part of my life and talk to me about regular things.  Some people get a pass.  Like my grandma.  It can still be the first words out of her mouth when she calls.  But I went into my appointment today ready to tell the doc I was going to give up for a while, and now that I have a house of cards to build again, I need to stay out of the wind.


Monday, January 5, 2015

Hiatus

It's been four or so weeks since the cryoablation of my right genitofemoral nerve and my pain remains the same.

So frustrated.

I've decided I'm not telling anyone about what's going on with my treatment anymore because when I do, I get constant questions about my progress, and it feels awful to tell people that nothing has happened.  Every question seems to topple the house of cards I'm trying to build.  And people don't realize or remember that every time I get a treatment, it takes a while for it to kick in.  Sometimes several weeks.  And when they ask right after the treatment if it worked, boom, down comes the house.

I appreciate the support, but it's taxing to keep other people updated all the time.  Every question makes me think about it, and I need to think less about it.  When I think about it, I feel trapped.  I feel damned.  I feel like I'm being punished.  And I need to avoid triggering those thoughts.

I've had glimpses of progress.  My left-side pain is still lower than the right side, but it's not gone.  The fact that my pain is no longer symmetrical is very good news, but I'm still in horrible pain all the time.  And while I've had moments or even segments of days when my pain has dropped low enough for me to think it's on the way out, they haven't lasted.

I just have to shove it to the back of my mind right now.  The late-winter months have been very hard for me the past few years.  In 2011, my pain was so bad that I had to leave my AmeriCorps position.  In 2012, I was on the way out with my ex.  In 2013, I was going to Rochester for the first batch of nerve blocks, none of which worked, and I was on a really bad brain med that caused my anxiety to skyrocket.  In 2014, I was on my second batch of nerve blocks at Rochester, resulting again in no progress, and my anxiety -- as a result of a failed nerve block that increased my pain -- grew and grew until it sidelined me entirely in late spring.  I can't go through that again.  I need to stay safe psychologically over the next couple months, which means removing my pain from discussion.

At the heart of feeling trapped by my pain is that I'm 34, I'm single, I want to date, I want to fall in love, I want kids.  And I don't know if it's in the cards.  It is really, really hard to surrender all that hope over to the universe.  But it feels like that's all my life has become.  Surrendered hope.

I get mad a lot.  I'm not sure how to be mad, so I snuff it.  I want to kickbox or something, but my pain says no.  I play my flute, but no piece is violent enough.  I listen to angry music and let my synesthesia slice my body apart.

I went to see Slayer at a friend's random invitation


and I thought it would be terrifying, but it actually felt really good.  I don't know what everyone else sees in it, but to me, that is music of surrender.

I don't know if I'll be updating my blog any time soon.  I've been working on centering my life after years of discrete whirlwinds.  My self-esteem is better than it's been in years.  I actually love myself again.  I need to live in that and not in the future.