Discussions By Condition: Medical Errors

Doctor misdiagnoses bladder issues as interstitial cystitis

Posted In: Medical Errors 0 Replies
  • Posted By: alycorn
  • September 5, 2009
  • 00:08 PM

I have a mental condition known as conversion disorder. My emotions and stress are often expressed in the form of physical symptoms. I've had urgency issues for about 6 years now, mostly because of the conversion disorder. Part of the deal with conversion disorder is that it's very much a double-edged sword when it comes to diagnoses. Over time, your symptoms change. It's a good thing, and means that you've blocked one pathway for the condition, but that energy had to form a new path and if coming out as an emotion still isn't an option, then it's another physical symptom. With each symptom change, there's actually two possibilities - one is that your symptom CHANGED. The other is that you are developing a NEW problem that isn't related to conversion disorder at all. Some doctors decide that ALL your problems are conversion disorder(which isn't accurate because sometimes there are real problems masked by the conversion disorder) and some doctors(and patients) decide that a symptom change is ACTUALLY a whole new illness that is physically caused, has nothing to do with conversion disorder and must be treated. So basically each time something different happens, you have to explore whether THAT change is a new symptom OR a different condition.
I'd had frequent urgency for a long time, but after about three years it stopped for about two months, then when it started again, it seemed somehow different. I thought it might be treatable now and wanted to double-check that it was still part of my conversion disorder so I finally went to the only urogynocologist in my area to see if she could help me.
Boy was she a mistake! She insisted on a urodynamic analysis, even though I'd had one before, then after talking to me more decided that I probably had interstitial cystitis. I reminded her that I had conversion disorder and asked if there were any tests for interstitial cystitis (the last thing I want to do is go through an unnecessary treatment and extra medication that I don't need) She told me that actually there WAS one, a 'sensitivity' test. She scheduled me to get one...four months later!
So I spent four months waiting. I intentionally did not do much research on interstitial cystitis because I didn't want to scare myself, but I did enough that I knew the basics of the condition. It seemed possible but not hugely likely that I had it. If I did have it, it sounded like I was relatively mild because I wasn't in pain, just frustrated.
When I finally went in for the test, I was a bit upset to find that what they meant by 'sensitivity' was 'how much pain are you in when we do THIS'. But I believed that it was the only test, so I took it. The nurse catheterized me, and put in one substance(one is distilled water, the other is a mild acid. The theory is that you're in MUCH more pain when the acid goes in), which I rated as a 1(out of seven). The focus is supposed to be on your BLADDER. My bladder didn't hurt, but cathiters HURT and so I was in pain lower down. So after she emptied the one substance and put in the second, I was extra sore where the catheter was, but no pain or discomfort in my bladder really. So when she asked me to rate my pain(I swear this is a great form of torture), I said 1.5, but with slightly gritted teeth. She then informed me that I 'looked like I was in more pain than that'.
I was eventually released, and after I got dressed, I went in to see the doctor who informed me that she was right and I DID have interstitial cystitis, so here's the diet from ***l to go on(the list of what you CAN eat is shorter than the list of what you can't, and a vegetarian would DIE because among other things, there's almost no fruits you can eat, no tofu, and very few nuts. The only source of vitamin C you're allowed is from bell pepers because most everything else is too acidic), and take elmiron every day for the rest of your life. Oh, by the way, if the elmiron doesn't agree with you, there's no alternative, it's the ONLY IC medication that's FDA approved. Around then, I was in extreme pain somewhere in the vacinity of my bladder which was the 'clinching proof' that I did indeed have interstitial cystitis. She then(and only then) gave me medication to ease that pain, and only AFTER I took it did she warn me that it was going to dye my urine bright orange for the next day or two. Oh, and by the way, it might stain your toilet bowl. A different nurse there informed me that she had interstitial cystitis too, which I thought was a bit strange.
I went home, was thoroughly uncomfortable for a few days from the acid and the catheterization, went on the diet, took the pills, and did some research. Turns out that test's not very accurate, and that it gives false positives AND false negatives. I gritted my teeth and stuck with it for a month or so, to see if it helped. I felt no better, the diet was driving me nuts, and I had my doubts about her diagnosis. So I did some research, and saw a urologist for a second opinion. She ended up doing a cystoscopy on me, which is the only way to positively identify interstitial cystitis - because with that you are looking directly into the bladder to SEE if there are any ulcer-like forms(which is why the bladder gets irritated and dumps everything so quickly).
The cystoscopy was, of course, more invasive and MORE painful than the sensitivety test. But in the process of preparing for it, I'd gotten the urogynocologist to provide me with her information from my testing, where I found something interesting. Her nurse had recorded my pain level as 3 during the second test! Apparently she'd decided that I HAD to be in more pain than I reported, and had written down HER evaluation of my pain level, rather than mine. I believe that's called falsifying lab results, and I believe that's illegal.
So after the cystoscopy, I was given a new pain-numbing pill, this time one that turned my urine Tidy-bowl blue! My my, what an interesting variety of colors urine can be just from drugs ;-)
Moral of the story: if everybody in the office 'has it', there's probably a deal going on with the drug company.

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