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The Day of Diagnosis...
Hey,
I went to my uro-gyno appointment today. I saw the PA for the doctor and she was wonderful. She said that reading my chart, it sounded like Interstitial Cystitis (IC) to her, even before we spoke. She wanted to run some tests today (I wasn't expecting it, but happy to have tests done). She first did a urine culture and found red and white blood cells. I said, over a dozen urine cultures and yours showed it? The testing kit they use is sensitive to trace amounts of RBC and WBC. So, I had both and no bacteria (urethra culture was negative). She then used a cath. (so painful) and she filled my bladder. She said to tell her when I felt like I had to urinate, then when I would pull off the road and hide behind a tree, then when I thought I'd die. 40cc's I was having to pee really bad. 150cc's I was ready to pull off the road (at this point I was getting nautious and bawling from the urethra pain and the pelvic pressure). By the time she got me up to 350cc's I was hyperventilating and bawling. It was horrible, but she wanted to rule out pelvic floor problems and overactive bladder contractions, so we can taylor my treatment to my problems. It is obviously abnormal to have that urgency/pain because normal bladders sense the need to urinate around 150cc's, but can hold up to a liter (1000cc's), so she said. She was looking for contractions (to signify if I have an overactive bladder), but she said that my pelvic muscles are great and that my bladder is not overly contracting. So, she was going to have me come in for another test (potassium sensitivity test) and I would have to be cath'd again, but considering that is hell for me, she did the other test today too. With the saline, I felt like I had to urinate at 40cc. She said that if I did not have IC, I would be able to hold 40cc's again before needing to urinate. She put in the KCl solution and it burned so bad. I was on fire. She barely put in 5cc. She said that is was a very strong positive test for IC, even if you can't see it on a cystoscope because it is a microscopic disease for many patients. You don't have to have gaping open ulcers to have IC. You can have tiny specks that are ulcerated that cause symptoms. I told her I don't burn or anything like that, but she said that my little "hiccups", making me have the urge to urinate every moment of every day/night, is my bladder's reaction to the pain.
So, I have prescriptions for Elmiron (into week 2 now), Elavil, Atarax, and Ultram. The ultram is just for the next few weeks. I have to also jounral everything I eat/drink on bad days to see if there is a "trigger"... but so far... I think I reacted to the Tylenol last weekend... but I'm not sure.
I also have to do these bladder lavages (washes), where they use an infant cath. to put Elmiron and lidocane directly into the bladder. I'm sure some of you guys have had this. I was told that some people get a profound effect with that. I go 3 times next week then every week until the Elmiron builds up in my bloodstream (maybe 2-3 more months). She said the hot flashes and night sweats are not a common thing she hears (especially at my age), but she said it could be a number of things and to just give Elmiron some more time to see if I get used to it. She said that she could see how the stress on my body is causing it or maybe it is a bug going around. So, I'll give it more time and hopefully I'll start to improve some. Boy, this is a nasty disease, but at least I can start treating it. I already started the Elmiron and I have been trying to "train" my bladder to hold urine longer, but that clearly hasn't helped because my bladder couldn't hold anything comfortably!
Well, I thought I'd let you know that I got a diagnosis. Not a good one, but things could obviously be worse. I wish they ID'd this months ago instead of trying overactive bladder meds (which this lady said wouldn't help because my bladder wasn't contracting like crazy... nice to know after months on Vesicare/Detrol/Ditropan). I just have to look forward and hope things improve soon, especially before my masters program starts in June!
Any prayers or well wishes for getting improvement quickly would be appreciated!
I went to my uro-gyno appointment today. I saw the PA for the doctor and she was wonderful. She said that reading my chart, it sounded like Interstitial Cystitis (IC) to her, even before we spoke. She wanted to run some tests today (I wasn't expecting it, but happy to have tests done). She first did a urine culture and found red and white blood cells. I said, over a dozen urine cultures and yours showed it? The testing kit they use is sensitive to trace amounts of RBC and WBC. So, I had both and no bacteria (urethra culture was negative). She then used a cath. (so painful) and she filled my bladder. She said to tell her when I felt like I had to urinate, then when I would pull off the road and hide behind a tree, then when I thought I'd die. 40cc's I was having to pee really bad. 150cc's I was ready to pull off the road (at this point I was getting nautious and bawling from the urethra pain and the pelvic pressure). By the time she got me up to 350cc's I was hyperventilating and bawling. It was horrible, but she wanted to rule out pelvic floor problems and overactive bladder contractions, so we can taylor my treatment to my problems. It is obviously abnormal to have that urgency/pain because normal bladders sense the need to urinate around 150cc's, but can hold up to a liter (1000cc's), so she said. She was looking for contractions (to signify if I have an overactive bladder), but she said that my pelvic muscles are great and that my bladder is not overly contracting. So, she was going to have me come in for another test (potassium sensitivity test) and I would have to be cath'd again, but considering that is hell for me, she did the other test today too. With the saline, I felt like I had to urinate at 40cc. She said that if I did not have IC, I would be able to hold 40cc's again before needing to urinate. She put in the KCl solution and it burned so bad. I was on fire. She barely put in 5cc. She said that is was a very strong positive test for IC, even if you can't see it on a cystoscope because it is a microscopic disease for many patients. You don't have to have gaping open ulcers to have IC. You can have tiny specks that are ulcerated that cause symptoms. I told her I don't burn or anything like that, but she said that my little "hiccups", making me have the urge to urinate every moment of every day/night, is my bladder's reaction to the pain.
So, I have prescriptions for Elmiron (into week 2 now), Elavil, Atarax, and Ultram. The ultram is just for the next few weeks. I have to also jounral everything I eat/drink on bad days to see if there is a "trigger"... but so far... I think I reacted to the Tylenol last weekend... but I'm not sure.
I also have to do these bladder lavages (washes), where they use an infant cath. to put Elmiron and lidocane directly into the bladder. I'm sure some of you guys have had this. I was told that some people get a profound effect with that. I go 3 times next week then every week until the Elmiron builds up in my bloodstream (maybe 2-3 more months). She said the hot flashes and night sweats are not a common thing she hears (especially at my age), but she said it could be a number of things and to just give Elmiron some more time to see if I get used to it. She said that she could see how the stress on my body is causing it or maybe it is a bug going around. So, I'll give it more time and hopefully I'll start to improve some. Boy, this is a nasty disease, but at least I can start treating it. I already started the Elmiron and I have been trying to "train" my bladder to hold urine longer, but that clearly hasn't helped because my bladder couldn't hold anything comfortably!
Well, I thought I'd let you know that I got a diagnosis. Not a good one, but things could obviously be worse. I wish they ID'd this months ago instead of trying overactive bladder meds (which this lady said wouldn't help because my bladder wasn't contracting like crazy... nice to know after months on Vesicare/Detrol/Ditropan). I just have to look forward and hope things improve soon, especially before my masters program starts in June!
Any prayers or well wishes for getting improvement quickly would be appreciated!
On the Beach with IC 
IC; PFD; possible Fibromyalgia; IBS; 
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