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  • barb61
    replied
    Hi Cindi, Thanks for writing back, it does help to know that people are out there listening ..I had my test done in the office. Did not get put to sleep. I believe he put some type of fluid in my bladder then looked with a camera or light or something like that. It hurt afterwards for a day or so. I just don't want to get another one. Barb

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  • barb61
    replied
    Hi Linda, thanks for the support. I had my scope done in the office . He did put some fluid in me and then looked in my bladder. I don't know if that is the same thing as a hydro/cystro...Barb

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  • barb61
    replied
    Hi Cindi, Thanks for writing back, it does help to know that people are out there listening ..I had my test done in the office. Did not get put to sleep. I believe he put some type of fluid in my bladder then looked with a camera or light or something like that. It hurt afterwards for a day or so. I just don't want to get another one. Barb

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  • cmclien
    replied
    Going good

    Originally posted by barb61 View Post
    thanks so much Cindi for the support and info. How is the meds helping you so far? I was told from my GP that they an have side effects as bleeding. This is a terrible thing that we have to have. I got a salad for lunch today and didn't know what I could put on it. That was never something I had to think about before. Barb
    Your doc must be referring to the elmiron? I think that is a rare side effect, less then 1%. Most people just have GI upset from it which I did too but now I don't, probably because I either take pepcid or omeprazole with it. So far so good for me. Headache for a couple of weeks but gone now. I am tolerating foods alot better now so I think its starting to coat my bladder.

    The oab med I take is vesicare, though I used ditropan xl for a couple of years that my GP prescribed. They help my frequency and that feeling that you've got to go before your bladder is full generally to the point where I don't have to think about going all the time and when I'm on them usually go 2-3 hrs in between.

    Were your two scopes in office or done under anesthesia? Tests aren't required anymore but alot of doctors like to do the cystoscopy in office to rule out cancer and / or the cystoscopy with hydrodistention done under GA.

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  • Linda May
    replied
    i had a hydro/cystro done in the hospital, they put you to sleep. the precedure is they put a small canera up your uretha and expand your bladder. your bladder then will show IC and whether it is mild, moderate or severe. this did not hurt when i woke up i just had the same pain as before.

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  • barb61
    replied
    thanks so much Cindi for the support and info. How is the meds helping you so far? I was told from my GP that they an have side effects as bleeding. This is a terrible thing that we have to have. I got a salad for lunch today and didn't know what I could put on it. That was never something I had to think about before. Barb

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  • cmclien
    replied
    Hi Barb,
    Sorry you're feeling down. Its hard when a doctor won't listen or treat based on symptoms. I think your GP is smart telling you to go to another uro so at least you have her support. Not everyone with IC has pelvic pain, some of us just have pelvic pressure, and the other symptoms you are describing after you pee.
    Have you read through the new AUA guidelines? I have some links below. It covers new diagnosing and treatment of IC. I would think red spots in your bladder would certainly be enough to start treatment. What does he think is causing the inflammation? IC is inflammation of the bladder wall causing pain and all the other symptoms. You can have NO red spots on your bladder wall and still need treatment as treatment is now based on 6 weeks of symptoms and no bacteria in your urine. I really don't understand why some doctors hold back treatment. My in office cystoscopy looked fine but my UG diagnosed me with mild IC based on symptoms. He is treating me with elmiron and oab meds. He wanted to do instillations but agreed to wait and see how the elmiron works for me.

    Its thought that sometimes antibiotics help reduce the inflammation and so help with symptoms in the short term.

    Hope you get relief soon.

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  • barb61
    started a topic testing for IC

    testing for IC

    Hi everyone! I went to see my GP today as I can't get into see the urologist until April 6th. She was more open about me possibly having IC. She put me back on antibolics. Just 100mg once a day until I get into seeing my urologist. Today was terrible. After I urinated it felt like pressure and pain. Just like when I thought it was a UTI. Don't really know what the urologist will tell me now as I have beened scoped twice since Feb 11th. I was tested for cancer cells which was negative, but he won't discuss IC as I don't have alot of pelvic pain. My GP said that I should see another doctor. What kind of special tests do they do for IC? When he scoped me in Feb, he said he saw some red spots that he felt were inflammation. Is this what they see when they think you have IC? Why does antibolics help me? Just a real bad day today, for I am eating heathly and just drink water. Don't know what else I can do...feeling very depressed.Barb
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