February 9, 2012

How I Healed My Interstitial Cystitis: Part I - Diagnosis

According to a google search, this woman exemplifies Interstitial Cystitis. I would agree.

I don't talk much about my Interstitial Cystitis (IC) these days because frankly, it's really no longer an issue for me. However, there was a time when it pretty much ruled my life, and my nights were filled with crying, wondering if I really wanted to spend the rest of my life living that way. Eventually I found a system of treatment that worked for me, and after several years of following a fairly strict diet, I now live a pretty much normal life. For those of you who are not familiar with IC, this is kind of a big deal.

Interstitial Cystitis, also known as Painful Bladder Syndrome or Bladder Pain Syndrome, is a disease of unknown causes that results in the chronic inflammation of the bladder, sometimes with bleeding, and less often with ulcers present along the bladder wall. Very little is known about the disease, including what causes it and how to cure it. Consequently, getting a diagnosis is fairly difficult. IC pretty much feels like a urinary tract infection ALL the time, it never goes away. For guys, who are far less familiar with UTIs than women, you know that burning feeling you get when you stop mid-pee? Yeah, that's kind of what I feel like all the time, thanks to IC. The severity of IC can vary, some people go on disability, some people have their bladders removed and would rather live their lives with colostomy bags, some people never leave their house, some people can never have sex, some people travel with a portable toilet. All in all, it's pretty miserable.

Of course I had the worst type of IC, and had Hunner's ulcers all along my bladder wall. They were so bad that the old ulcers had turned my bladder into rigid scar tissue, the ulcers that hadn't healed yet were raw and bled for days after I underwent the diagnostic procedure. On top of that, my bladder was about the size of a walnut and could hold about 1/4 of the average amount of liquid as a normal woman. Awesome. I bring the stereotype to the girl who's constantly saying, "But I gotta pee!" to life.

When you are diagnosed with interstitial cystitis you go through an awkward period where you avoid telling people that you have a disease that makes you pee all the time. Most often you go with, "Oh, I have this thing" and if people press maybe you'll say, "Yeah, I have ulcers." Mostly I explain it as Crohn's but in my bladder. It comes up a lot, because all the sudden your diet becomes severely limited and people are wondering, hey why can't you have a beer, why can't you drink orange juice, why can't you grab a coffee, why are you mapping out the location of every bathroom within 3 square miles?

Interstitial Cystitis is a disease that apparently 1 in every 100,000 people have but that no one talks about...because no one wants to talk about how they get panic attacks if there's not a bathroom in their line of sight. I was diagnosed with IC when I was about 20 years old. It took several doctors, most of whom were assholes. I then went almost eight years before I met someone in real life who also had IC. Kind of impressive, considering there are somewhere between 5 and 8 million in the US alone who suffer from this disease. People have it, no one talks about it (at least not in real life).

So yeah, this is what I was diagnosed with the first semester of my sophomore year of college. Bummer (to say the least).

It started during fall finals, when I was sitting at my desk, under my bunk, chowing down on Reisen chocolates in an attempt to stay awake and study. The next thing I found myself in incredible pain. I spent the night crying on the floor of our dorm room because crawling up and down the ladder from my bed to the bathroom was too much effort. The following morning I went to the gynecologist, who figured I either had microscopic kidney stones or interstitial cystitis. This in itself is amazing, since it takes an average of four years to get diagnosed with IC and my gyno called it right off the bat.

Although I was 20, I went to the pediatric urologist who had treated me two years ago for kidney stones, Dr. Mark White, who is currently at Albany Medical College. It was one of the most insulting experiences of my life.

When I got into the office and explained to the nurse that when I ate certain foods or did certain things I was in extreme pain and needed to use the bathroom urgently she looked at me and said, "That's like the old story, where the patient comes in and says 'Doctor, it hurts when I slap my knee,'" she then slapped her knee to demonstrate, "and the Doctor says, 'Well then don't slap your knee!'" Yes, that was her take on the situation, thank you for such stunning insight. I guess I should just refrain from eating or drinking anything other than plain noodles and water. Sounds totally normal. Dr. White then came in and told me that even if I did have interstitial cystitis, I was statistically too young, so he wouldn't give me that diagnosis. He did not offer me any alternative explanations for my suffering, or really take it seriously at all. Instead, all he said I need to do was "re-potty train myself." Excuse me? I'm a 20 year old woman in severe pain and the only medical advice for me that you have is to "re-potty train myself"? That was the last time I visited Dr. White's office, as it was apparently full of jackasses.

Now, to be fair, what Dr. White COULD have meant was that I could use bladder retraining as a technique to help with IC. Bladder retraining is a way of charting and, obviously training, your bladder to void at certain times and is used for bladder incontinence, but is also used in conjunction with other treatments for some IC patients. However, it is not appropriate to imply someone's are symptoms imaginary and that they just need to "re-potty train."

The next doctor I went to was far more opened minded, which was somewhat ironic since Dr. White was the young and upcoming doctor and Dr. Oberheim was very established and experienced; one would have expected him to be set in his ways. Instead of assuming I had some mental illness and poo-pooing my symptoms away, Dr. Oberhaim performed the appropriate tests to rule out urinary tract infections and other possibilities. Because so little is known about IC, it's basically a disease of elimination. Once all those tests came back negative I was scheduled for several surgical procedures - a hydrodistention and cystoscopy under anesthesia. Basically, they knocked me out, filled my bladder up, and then put a camera inside to look at the whole thing.

My bladder was full of ulcers, bleeding, and scar tissue. It was also teeny weeny and could hardly hold any liquid.

I felt like total hell after. By over filling my bladder they had broken apart and irritated the open ulcers. Also, because they've just filled your bladder up with liquid you're going to have to pee a lot after a hydrodistention, and because you're unconscious or near unconscious, or if you're me, because you've had a reaction to the anesthesia and are throwing up, you get a bedpan. Awesome! Who doesn't want to be a 20 year old girl with a bedpan, right? So I'm sitting in the hospital, with a bedpan (not comfortable), peeing blood, and after several hours I decide I've had enough of that nonsense and I'm going to use the damn bathroom myself. Which I do, successfully. I then sit back down on my bed, and announce I am going to pass out. Which I also do, successfully.

All in all, the procedure really sucked, but I instantly felt better because at least I had an answer as to what was wrong with me and a doctor that didn't think I was crazy.

You can read the second part of my interstitial cystitis story here.