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View Full Version : Another Newbie Here, Diagnosed 11/6


icgennifer
11-18-2008, 10:24 AM
Hi fellow ICers!

First off, I'd like to thank everyone who has been posting on here for the past few years. Your posts have given me a lot of hope and valuable information.

Here's my story.. During the summer of ‘05 I got a UTI that just didn't seem to go away. After a whole lot of antibiotics, pain, frustration and doctor’s appointments I was finally referred to a urologist.

The urologist suspected IC but I just didn’t want to believe it. He couldn’t make an official diagnosis because the in office cystoscopy didn’t reveal anything unusual. He gave me a prescription for Vesicare and sent me on my way. The vesicare seemed to work. I took it for a couple of months and then stopped and didn’t have symptoms again until 2008.

Fast forward to 2008, once again I had the UTI that just didn’t seem to go away. I changed urologists and was scheduled for hydo/cysto and bladder biopsy. My bladder looked good during surgery but the biopsy revealed mild underlying chronic inflammation, small vessel congestion and mild submucosal edema. I FINALLY have my IC diagnosis.

My urologist was great for a diagnosis, but does not seem to know much about treatment options for the IC patient. I have an appointment with a urogynecologist in early December to explore other options.

I had my first bladder instillation today and I take 25 mg of lyrica. The Elmiron gave me migraines so I had to stop it.

Although I am devastated to have found out that I have this difficult to control disease, I am happy to have found such a wonderful website.

My IC seems to give me more pain and pressure than frequency and urgency. Has anyone taken any medication that has seemed to alleviate these symptoms?

My doctor said that I could not break open the Elmiron capsule to take the medicine.. does anyone know why?

Thank you for all of your support!

leelee88
11-18-2008, 02:04 PM
Hello and :welcome:

It does seem like you are on the right track as far as treatments..

You are on the instills and they do seem to help alot of people and also the Elmiron seems to help many.. The reason he said to open the capsule is because some people have stomach upset in the beginning and by pouring it out of the capsule this sometimes helps..Also I would suggest getting on the IC diet..This has really helped me and others..I wish you the best and if you have any questions just ask..

icgennifer
11-19-2008, 03:57 AM
Hello and :welcome:

It does seem like you are on the right track as far as treatments..

You are on the instills and they do seem to help alot of people and also the Elmiron seems to help many.. The reason he said to open the capsule is because some people have stomach upset in the beginning and by pouring it out of the capsule this sometimes helps..Also I would suggest getting on the IC diet..This has really helped me and others..I wish you the best and if you have any questions just ask..

Hi Ronda,

Thanks for writing me back! My doctor told me NOT to break open the Elmiron capsules. I have read on this forum that many people do break them open and take them with water. I was wondering why my doctor would advise me not to take Elmiron that way. My doctor doesn't seem to know much about treating IC, although he was great for a diagnosis. I'm trying out another doctor on 12/4 and I hope he can help me with more treatment options.

leelee88
11-19-2008, 04:59 AM
Oh ok sorry I miss read that.. Yes my Dr suggested the same thing NOT to break it open.. I have learned more on this site than any Drs have ever been able to help me with! But I do know there are MANY good IC drs out there! I have switched to a new URO since then and she does try!!! And will work with me when I suggest something new. SO I educate myself and bring it to her..I hope your new dr works out!!