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.