Tuesday, October 16, 2018

My pelvic pain is basically an allergy

This is the post I should've written immediately but didn't because, probably, I tweeted about it instead, which is very useful for the zero people who follow me on Twitter for pelvic-pain updates.

Sometime earlier this year, I had a meltdown at my urogynecologist's office. It was the kind where you see that your pain is eternal and that you're trapped inside it forever and it crushes you and you get so angry you actually start gesturing in your doctor's presence, like you're a human with a person inside you.

After some gesturing, I spat out, "I don't understand why we don't know what's going on!"

"We do know what's going on," my doctor said.

Whaaaaa???????? What was that, senor? We who? Who knows?

"It's an allergic process," he might've said after I did my voiceless, expressionless double-take. He explained that basically, my bladder is recognizing a lot of things as allergens, and that in response it produces mast cells and yadda yadda yadda, I think he did actually explain this to me but I'm not up to doing the research to corroborate my memory tonight.

"Orange juice?" I said in a sentence that I can't remember.

"When it hits your bloodstream, your body reacts," he said but in different words.

"That's why the bladder flares up within minutes of drinking orange juice and not after it has filtered through the blood and into the urine, making the urine more acidic," one or both of us said in part or in whole.

And that's why antihistamines help my pain. Did I even post about that??? I take Zyrtec for seasonal allergies -- it's the only non-Benadryl one that has an effect on my itchy eyes. I noticed that when I took Zyrtec, I'd have lower pain, so the doc said go ahead, take it every day. Then he put me on hydroxyzine too, which is one of the standard medications used to treat interstitial cystitis. Zyrtec, it turns out, is a metabolite of hydroxyzine. A little bit of serendipity there.

I repeat: hydroxyzine, an antihistamine, is a standard treatment for interstitial cystitis. I have known about this for longer than I can estimate, but I never had the puzzle piece of an antihistamine's efficacy in treating IC. Now I have it! And you do, too.

Over the summer, I was on 10,000 medications, okay that isn't true. But I was on nortriptyline, a tricyclic antidepressant. My psychiatrist prescribed it for depression, which it didn't help, but I stayed on it long enough to confirm that it didn't help my pain either. That's the second tricyclic I've been on and I think we can cross those off the list for my pain treatment. Also! Word to the pain-havers! Nortriptyline made it even harder for me to pee, and it backed up my bowels too. Those were pretty rotten symptoms on top of pain and pelvic-floor problems.

Meanwhile, the urogynecologist had me on Elmiron, the big-name IC drug, three times a day, as well as Zyrtec once a day, hydroxyzine three times a day, and he wanted me to go back on gabapentin and take it three times a day and I got the script filled and took one and said to hell with that. That drug takes a lot of adjustment and I know a dose of 300mg three times a day isn't high enough to help (see the years 2010 and 2011).

Along with my other meds, this was just, I just, I just felt disgusting. I'd fill my little pill holders and take pictures of them because they looked so ridiculous. I think I was up to 8 prescriptions plus the Zyrtec, and then throw some vitamins in there. I knew that some or all of those meds could change my life radically, but I also started to feel like I was pill chasing.

And between the nortriptyline and the antihistamines, I felt like a little fading fairy in a Disney film. I was sedated and lightheaded all day long. My mouth and eyes were dry and I would panic easily from feeling lightheaded and thinking I was going to faint and die.

At the same time, as spring turned, the antihistamines seemed less effective. It seemed like since they had more to overcome because of my seasonal allergies, my bladder wasn't getting the same benefit. I thought back and remembered multiple out-of-the-blue pain flares in April. I also remembered that I seemed to have better success with Elmiron in the winter. At least one study has shown that people often experience more IC flares during allergy season. No I'm not finding it right now.

So here I am. I take hydroxyzine in response to a flare rather than preventatively. I ran out of Zyrtec or put it away in a strange place so I haven't taken it in a month or so. I'm off Elmiron entirely, mainly because my inconsistent experience with it started to wear on me -- though now I realize that the inconsistency might've been seasonal.

Basically, I've put a moratorium on chasing medical treatments. I decided if I'm going to do this, I'm going to do it the way I've always thought it should go -- and now I know why it could work!!!!!! I've got to eat well consistently for at least a year. I've got to avoid the bad foods as much as possible. My top triggers seem to be
  • vinegar
  • alcohol
  • caffeinated tea
  • spicy food
  • tomato-based things
  • chocolate
  • citrus
  • coffee
  • sugar in certain forms (like, SweeTarts. Other forms can be bad, but that kind is worst)
There are other foods that bother me, but these are the foods that are like bombs. Vinegar, for example, it's like, let me just shove a squid up my urethra instead. Caffeinated tea is a gamble. Sometimes it's fine and sometimes it's like someone is trying to launch a zeppelin in my bladder. Spicy food and tomatoes, I wake up the next morning refusing to move because the pain is so bad and will just get worse.

Cutting these out is not hard nutritionally. Almost all of them do not provide us with nutrients. And I'm not too overly tempted by any of them not to be able to cut them out with a couple weeks of refusal-by-willpower.

After that it gets more complicated. If I really want to do my bladder right, I need to eat very simple whole foods and limit those foods until I can figure out the intermediate pain triggers. I'm fine with a diet of eggs, chicken, rice, potatoes, kind vegetables, oatmeal, and bananas, but there are three problems I run into:
  1. It's very easy to eat too little on this diet.
  2. Where are the snacks?!?!?!?!?!?!?!?!?!?
  3. Other people and the social obligation to eat with them.
#1, okay, eat more. #2 is very hard. When I haven't prepared my lunch for work, I am very, very likely to go off the diet and eat whatever is handy. #3 I've dealt with before, but it takes a spine.

So I decided not to make this a cold-turkey thing. I decided to work on cooking more, and as that habit falls into place, I won't have reason as often to go off the diet. It's working pretty well so far, actually. I think taking the pressure off by not aiming for perfection helps me stick to the deal. And when I eat with friends or family, I don't feel like I'm cheating -- I've blocked out space for it in the plan. Eventually I can go back to the good old days of sitting in a restaurant watching everyone else eat. But I won't attempt that right now while my self-discipline is still meager.

That's my long-overdue news that I'm pretty sure I didn't post about yet. It was a breakthrough for me in understanding the way my pain works and what I have to do to fight it. It helped me start believing again that I can get better, that I have enough power over my situation to direct the course of my illness. 

Thursday, October 4, 2018

12 Years

October 2 was the twelve-year anniversary of my pelvic pain's arrival.

The pain actually began gradually.  In August and September of 2006, I started to get very low-level pain in my lower abdomen that I attributed to not drinking enough water.  It was constant but very quiet, like a minor headache, and I hardly noticed it.

Then, on Friday, September 29, I met someone new and hooked up with him.  The next morning, I regretted not peeing after sex, as we are advised, but thought the discomfort was fleeting.  It didn't feel like a UTI exactly, and I again had the vague sense that if I drank more water, the pain would subside.  By Monday, however, the pain was full blown, and my new life had begun.

My pain in those early months was not constant in the way it would grow to be.  It cycled up and down.  When I peed, it would catapult up the scale and ring on afterwards for a half-hour or so.  Then it would quiet back down.  It also seemed to cycle relative to eating and other activities, though I didn't spot a pattern.

Frankly, I wasn't looking for a pattern in the first couple months.  I thought I had an atypical bladder infection that would resolve with the right antibiotic.

The first doctor diagnosed me with a UTI and gave me antibiotics for that.  The second doctor diagnosed me with chlamydia and gave me antibiotics for that.  Both diagnoses were wrong and I ended up getting an ultrasound of my bladder and kidneys to make sure I was eliminating all urine when I peed.  I was.  The next doctor tried me on a month of Macrobid, which didn't work either.

As the months passed, the intermittent stretches of low pain went away.  My muscles were kicking in, trying to hold my pelvis steady because movement made the pain worse, and eventually that muscle engagement became dysfunctional.

I went through countless gynecologists and midwives, a few of whom were incredibly condescending.  It was a horrible stretch of time.  Finally, eight or nine months after the start of the pain, my mother's gynecologist diagnosed me with vulvodynia.

It's hard for me to write past this point because I get so angry.

Right when my pain flared up, I saw about five urologists who could've diagnosed me with interstitial cystitis.  IC is not common, but it's not obscure.  It's well within a urologist's wheelhouse, and any sustained pain resembling a UTI should be investigated as possible IC.

I saw six or more gynecologists and midwives who could've diagnosed me with vulvodynia.  Vulvodynia can affect up to 15% of women at some point in their lives, depending on which statistics you're looking at.  It should be one of the first things doctors consider when women have unexplained pelvic pain, yet I was told to change my toilet paper, bathe in oatmeal, and use Aveeno.

It's when I'm thinking about all this that I understand why people cut themselves.  It makes me want to rip my skin open.

If a urologist had caught the IC, I might not have developed vulvodynia.  My pain might've remained cyclical and not become constant.  My pain might've receded to a low level with intermittent spikes.  Note how I'm not saying we could've cured it.  It's possible, but I don't like to think that far.

Early on, I was able to have sex without pain so long as my bladder wasn't in the mix.  Pain-free sex was gone by the time I started visiting gynecologists.

If a gynecologist had caught the vulvodynia at the start, we could've fought it before it acquired more and more layers to the point of becoming indistinguishable from the bladder pain -- to being worse than the bladder pain.

It could've saved me so much had any of these doctors taken me seriously.  Had they looked at me as chronic and not acute.

No use looking at what's lost, but all the same, I have a really hard time being high-minded about it.  Maybe it's because my loss isn't just past tense.  The pain stands between me and my senses, between me and my thoughts, me and my hopes, me and experience every second.  I still do not hear music like I used to.  The smear of my pain is always there dulling it.  The world is constantly muted.

The past week has been terribly difficult and I don't know why.  My anxiety is intractable.  It's wires down my skin.  I've tried to zero it out in multiple ways, but so far nothing is helping.  I've also been exhausted, again in a different way than normal.  I rotate through possible causes in my mind -- season, weather, food, work, pain -- but there's no history for any of the current variables producing this kind of anxiety and fatigue.

When I'm less tired and less overwhelmed emotionally, I'll try to post about my diet experiments and some progress I've made in understanding the mechanism behind my pain.

Saturday, March 10, 2018

Medication interactions

Apparently estrogen can decrease the amount of lamotrigine in the bloodstream.  Lamotrigine is the linchpin of my bipolar treatment.  Lithium does this happy little dance to clear away the clouds, and diazepam runs to the rescue when my anxiety gets bad.  But without lamotrigine, everything collapses.

So, goodbye birth control.

I started it up again about six weeks ago and have felt increasingly worse.  At first, I thought it was normal aberration, maybe seasonal.  But the past week, the bipolar cycling has become obvious.  The only times I've cycled like this while on my current med combo are under extreme stress.  The cycling doesn't start up because it's February, and it doesn't start up because I am worried about a medical procedure.

I called the psychiatrist on call today to confirm that the birth control could be the problem.  Why my gynecologist didn't bring it up, I have no idea.  Maybe it isn't on his radar.  Maybe they are more worried about which medications can interfere with birth control and cause babies instead of what birth control can do to people who are on medications for bipolar disorder or epilepsy.

I really hate everything right now, especially myself, and I'm trying to remember that this is a mental state, not the truth.  Just get through today, get through the next few days, and the lamotrigine will be at the proper level soon.  If I'm not too far down the path of bipolar episode, I should come out of this without having to change my medications further.

Thankfully, I was just on birth control for birth control, and there are options that don't involve estrogen.

Pelvic pain data: the birth control I was taking (levonorgestrel and ethinyl estradiol... no brand name provided on this packaging, though there are many) didn't cause me more pain, but it did cause me to pee more.  That was my experience when I was on it before, too.  That time, I didn't note changes in my mood, but it's also possible I was in a rocky place at that point and wouldn't have been able to note changes anyway.

So, of course, when I started Vesicare, intended to treat urinary urgency and frequency, at the same time I started birth control... that was poor science.

Now to figure out how to be okay with the minutes I am in.

Wednesday, February 28, 2018

Trapped in the Vestibule

Lying here in bed, my eyes started doing that flicker thing they do when I'm forcing them to read but it's time to sleep. So I closed my Kindle and rolled over. But my heart is beating much faster than normal, maybe twice as fast, and I wondered if it's one of my medications or just what I ate for dinner. And then I realized that all my thoughts of suicide come out of thoughts of confinement to this pain.

During my time in college, three people who attended my school killed themselves. That is a lot, but it's especially a lot on a campus of 1,200. It was awful, and it shook everyone up. I was in the throes of my own depression, and I remember many times thinking, "At least I've never been suicidal."

I don't remember when the thoughts started, so I can't say for sure they were at bay until the pain came around. I think maybe my depression ramped up over time not in degree but in despair -- the more it seemed it would never go away, the more killing myself seemed reasonable. So I probably had suicidal thoughts before my pelvic pain started.

But eleven years into pelvic pain, I'm pretty sure if I didn't have the pain, I'd have a solid handle on the depression and anxiety by now. There are so many ways that I've grown in this time and so many things I've learned that would've made my early years easier. If I were only dealing with the one illness, it wouldn't rule my world.

All of my meltdowns have had to do with the pain. The summer I left grad school -- I left because of the stress of the pain. Americorps -- left for the same reason. 2014's agoraphobia came after months of failed treatments. 2016's outpatient therapy came after months of fantasizing about walking off a cliff.

And these thoughts that come into my head, thoughts I won't even write down -- I wonder how many of them follow thoughts about the pain.

I'm thinking most do. Almost all.

It's a maddening life. And then I feel guilty for thinking it is so bad. There is so much worse.

Then I think, well, imagine being made to sit on a hot iron without an end in sight. That would be a pretty horrible life.

Or a bed of nails. Or an acid bath.

At least the pain shapeshifts?

Of course I feel trapped. Of course I think of dying. That is to be alive and in pain.

I have news, but sharing it so far into a mournful post -- well, so I am disorganized.

March 23rd I go in for a bladder distention under anesthesia. The doctor will fill my bladder with water and expand it, a procedure that can lessen the pain for a few months. He will also do trigger-point injections, nerve blocks from inside the vagina. And he'll take a biopsy if anything that looks problematic.

At my last appointment, I told him I'm not convinced I have interstitial cystitis. He said, does your pain increase as your bladder fills? I said yes. He said that's all that needs to exist to diagnose painful bladder syndrome. Interstitial cystitis is a debated condition in the field of urology, but we can at least be sure I have PBS, and that's all we need to know to move forward with treatments.

At that appointment, the doctor also explained that some people think IC/PBS is an allergy. I may have mentioned before that I noticed a benefit from taking Zyrtec during the season for seasonal allergies. I generally only have to take it for a couple weeks, and even then I muscle through a lot, so I never had a real experiment with Zyrtec confirming that it helps. I started myself on it daily and wouldn't you know, so long as I'm not flaring, it takes the edge off my pain. I've gotten an allergy test before with 100% negative results. All I know I'm allergic to besides the seasons is bee stings. But maybe it's time for another test. I think people can be allergic to sugar, and my bladder hates sugar...

So I will end this post now and try to sleep. Maybe my heart has slowed. Before bed, it would sometimes dip below 50 beats per minute. Right now it is at 80. Maybe it is something I ate and not one of my many medications, all of which I will try to forget about for the night.

Sunday, October 15, 2017

Nightmare

I had to go off Elmiron over the summer for other medical reasons.  I started it back up again several weeks ago and haven't seen the benefit like I did before.  Maybe it hasn't kicked in yet.

I'm in a relationship and on birth control.  Birth control has been linked to pelvic pain, but usually to its onset, not its worsening mid-condition.  Still, I don't trust it.

My pain isn't really worse -- it just hasn't gotten better with Elmiron like it did last spring.  I blame myself for not taking it regularly enough, and surely I was not taking it exactly as prescribed while I was working all kinds of hours during the Indians' baseball season.  But I doubt I've been taking it any more inexactly than in the spring.

Here's the thing.  I'm up in the predawn hours because I got up to go to the bathroom and peeing felt like being ripped in half.  Which is normal.  And I lay in bed waiting for the pain to subside, but I didn't doze off again like I usually would.  Instead my feelings got hurt.

Penelope Trunk wrote in a recent blog post, "When you are living a nightmare you can't process.  You are just surviving."  When I read that, I wondered if my life counts as a nightmare.  She was talking about childhood abuse.  This is not that.

But tonight I thought of how when my pain is distressing, my mind jumps to rigging my neck to something and kicking over the chair.  Then I thought, well, that's probably a thought habit.  That's not a nightmare.

I have a thought habit I prefer for its impossibility.  The earth falls away before my feet.  I can step off without waiting, without preparing.  Preferably I'd replace the other habit with this one, but they pop up in different circumstances.  When I'm sitting still waiting out pain, it's my neck.  When I'm moving around walking through pain, it's the cliff.

I haven't killed myself yet so I figure I probably won't.  But I couldn't hold judgment against anyone who did, and people do.

I think I'm too much of a coward to kill myself.  But when you cross from this space to the other one, fear is a different thing.

Last fall I crossed to that other space, and I stayed with my parents and attended therapy five days a week for two months.  I put myself in a safe space.  I'm still here.

Here at five in the morning, I see the reasons for living.  I am not in constant emotional torture.  People at my current job speak of me as a Pollyanna.  Maybe that is relative.  It's certainly learned.  I hope it's true and not compensatory.

I would just like some progress.  Some degree.  If urination could not feel destructive.  If I could forget about my pain for stretches of the day.

Why am I a miserable character?  This pain has hurt so many people in my life.  The thought of my grandmas worrying about me.  I will likely see the sunrise today.

Tuesday, May 23, 2017

Elmiron is working and I've become a crybaby

I'm back on Elmiron, the only med approved by the FDA to treat interstitial cystitis.  I'm one of the lucky people who sees an effect on my pain from Elmiron very early.  Within two weeks, my pain is lower.  Sometimes it takes people months to see a difference.

My pain often gets very low on Elmiron.  When I eat something bad, my pain shoots up, so I have greater incentive to eat well -- instead of feeling bad all the time, I now feel bad only after eating something that triggers my pain.

Which has made me into a crybaby.  When my pain goes up to what was before an ever-constant level 5 or more, I CAN'T BELIEVE HOW MUCH PAIN I'M IN!  How can anyone live this way????  This is ridiculous!!!  How am I supposed to move?  I need to stop.  This is an emergency.  I have to lie down.  I need ice.  I need painkillers.  Etc.

Which in turn gives me respect for the living I've done with this pain for more than ten years.  I got used to the pain being bad to the point where I didn't realize how bad it was.  It was bad!!!!  Wow!!!!!!!!!!!!!!!!!

That's all.

Saturday, November 5, 2016

How I got confirmation of, if it makes sense, PTSD

In September this year I got extremely depressed.  I started staying with my parents because I didn't feel safe alone.  I expected the depression to lift in a few days but it didn't.  Then a few weeks, but no.  So my therapist and I agreed I should do an intensive outpatient therapy program, group therapy for three hours Monday through Friday.  I've been doing that for a little over three weeks now.

I feel better.  I'm on a new med and I'm on higher doses of my old meds.  I've worked through a lot in therapy.  It's the kind of stuff any person could use but that you don't realize is missing until all your usual tools for getting through life are gone.  It's like we're all carrying around our lives in boxes, keeping everything together, and then you get depressed and those boxes disappear.  And you realize how disordered and imbalanced and incompetent we all are.  And you can't swap in new boxes because depression won't let you, so you have to figure out how to organize yourself and your life in a way that you can carry it all without a box.  If that makes sense.  That's the best I've got so far in explaining the intensive outpatient program.

My therapist thought some of my anxiety might be due to epilepsy or migraines because some of it seems neurological, not psychological -- feeling like I'm lying down when I'm not, for example.  There were times when I literally felt like I didn't have a head.  But my psychiatrist and the psychiatrist who oversees IOP agree that these moments, which include moments of extreme terror, are not neurological but are instead dissociation, derealization, depersonalization.

I never understood my psychiatrist's terming this experience "dissociation."  To me, dissociation is the mind separating from the body in order to cope with trauma.  I have no trauma to point to.  So I said as much to the psychiatrist attached to the outpatient program, and he said there doesn't need to be a traumatic trigger -- sometimes the trigger is extreme anxiety.  But as we spoke about it, I came up with, "I don't know if this makes sense, but with the pain, I find I go through tiny little PTSD events, terrified of peeing, of setting the pain off, of" -- okay, I can't write this out now.  I need the compartment I'm in right now.

But the psychiatrist agreed with me.  I needed to hear that my PTSD explanation makes sense.

That my terror might be neurologically based was both frustrating -- another health problem -- and possible relief -- there's nothing inside me that will break from it; it is just an illusion.  That the terror is probably psychological is not the most welcome conclusion.  I do feel like the terror will break me someday.  It has, actually -- I spent a month confined to the house due to agoraphobia, unable even to get the mail because the world would start tipping sideways when I did.  To fear that it will break me again is normal, I tell myself.  But that doesn't allay my fear.

I wish I were better able to explain the continuous tiny PTSD the pain brings.  All I can say now is that I can't believe this is my life.  I'm staying with my parents because I don't want to see my future.  I had depression and anxiety before the pain, but I believe I would've stabilized and gotten better without the pain.  The pain is a monster.  It is trying to kill me.  I am trying to ignore it.  I'm doing it for the people I love because on a personal level, I can't defend this life.

I am safe.  I am okay.  I am in therapy five days a week and it is helping.  I'm focusing on the present because the future is blank.  I can't believe I've made it this far without collapsing.  It used to give me hope, a sense of pride, something or other to look at myself and see how strong I have been.  Now all of that doesn't matter.  What has it gotten me?  Here I sit, in pain.