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Ulrika, did you have a cystoscopy with hydrodistension (they put you under for this) or just a regular cystoscopy (generally done in the doctor's office)? It usually takes the hydrodistension to detect IC except in severe cases. I had a cystoscopy in the doctor's office which was completely normal. I found a new urologist who was able to to diagnose me based on previous tests and my symptoms (no cystoscopy with hydrodistension).
Pain in the urethra is not uncommon with IC. My pain with IC is only in my urethra. It is referred pain from the bladder. I also have pain with intercourse.
If you have not already been to the following site, I recommend http://www.ic-network.com. There is plenty of information about IC and related conditions, forums, and even a list of doctors by region who work with IC. It took me three urologists and lots of my own research to get a diagnosis for myself! However, once I got the diagnosis and was put on Elmiron, the IC med (which takes six months to start working), I started feeling much better.
Let me know if you have any more questions. I remember how frustrated I was trying to figure out what was wrong with me, and I'd be happy to help you any way I can. 
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Lisa
IBS-A, Interstitial Cystitis, Migraines
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Re: About IC
#310654 - 07/07/07 08:33 AM
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Ulrika
Reged: 08/20/06
Posts: 581
Loc: Uppsala, Sweden
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I'm not sure what hydrodistension means? It sounds like pumping in fluid in the bladder to make sure you can see the walls and structures properly. When I had my cystoscopy done I was not put under. However they did fill the bladder with water during the procedure.
Is your pain constant (or was it before you started taking medicine)? I just get this urethra pain sometimes, and it doesn't have to be while urinating. I also get pain across the bladder region after urinating if the bladder has been very full before emptying, but this doesn't happen very often. I have bladder retention from the paralysis I had as a child but my bladder is also a bit sensitive sometimes and wants to contract although there is only little urine in the bladder. If this is an unrelated thing or if it's only because of the nerve pain I have in the genital area I don't know. Does nerve pain tend to be related to IC as well?
For the time being the bladder symptoms are a little annoying sometimes but they don't cause too much problems so I don't think I need treatment for it. I'm just happy as long as the bladder works in a safe way. Am waiting to see if they want to do a pressure check but the urologists I have seen don't think there is any real reason to worry about that. But they might do one just in case anyway since the bladder emptying has become a little more difficult since I got IBS-D and need to keep the bowels so slow due to my sphincter control issues.
/Ulrika, IBS-D
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They fill your bladder with water during a normal cystoscopy to see the bladder walls. However, with a hydrodistension, they fill it with water beyond its normal capacity to stretch the walls. This allows them to see more. They put you under for this because, as I understand it, you would otherwise be screaming in pain. You probably had a regular cystoscopy and not the hydrodistension.
I had pain most of the time, not just when I was urinating. If you have ever had a urinary tract infection, that's what it felt like to me. It's actually what I thought I had until the bacteria culture came back negative, which is not uncommon in IC patients. However, there really isn't a "normal" set of symptoms for IC, which may be why it is so hard to diagnose. The symptoms vary quite a bit... some people don't have urethral pain, just bladder pain, and some people don't have pain at all, just the urge to urinate all the time. I believe some people do have nerve pain, but I don't know for certain.
I'm glad to hear that your symptoms are not too troubling. There are definitely more mild cases of IC and in most cases it is not progressive, so even if it is IC, you may not need anything for it ever. One thing you may want to keep track of is your diet. IC bladders tend to get irritated by acidic foods such as citris, coffee, vinegar, chocolate, etc (these are the most irritating). Many of these are GI irritants anyway, so you're probably avoiding them already. But it could be helpful to notice if your symptoms get worse after anything you eat or drink.
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Lisa
IBS-A, Interstitial Cystitis, Migraines
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Re: About IC
#310659 - 07/07/07 10:05 AM
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Ulrika
Reged: 08/20/06
Posts: 581
Loc: Uppsala, Sweden
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Thanks for the info. You're right - I am avoiding acidic food pretty much already since I get heartburn and stomach ache from it.
/Ulrika, IBS-D
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