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Interstitial Cystitis (IC) Message Board
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Old 03-19-2013, 06:57 AM   #1
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lalaorange5 HB User
I could really use some advice!!

I've known for years that something wasnt right with my bladder. As a kid and teenager I got uti's out of nowhere fairly often. In my early 20's I began getting these episodes of frequent urination and sometimes urgency. A lot of times it was accompanied by a dull pain where my bladder is. I've had many a uti test return negative. I would usually just wait it out and feel better a few weeks later. When I was 24 my bf convinced me to move to Arizona with him. I was lonely there and stressed out. I missed my family. I started having lower stomach pain and urinary urgency and frequency worse then ever. I was in and out of a local walk in clinic for a week. They did some tests, a pelvic exam...everything was fine. The dr suggested it was part of my anxiety disorder and said I should see a psychiatrist. He thought it was all in my head. 2 days later it was so bad I ended up in the ER. They did same things as the dr and also said it was likely psychological. My mom came to visit and shortly after she left my symptoms seemed to dissipate. ...she said it must have been anxiety related bc I missed her and was happy she was visiting. I've had a few minor episodes like this since...but none as bad as that time. Over the past 2 years I've had slightly more severe flare ups as well. I also have issues with sex...it sometimes feels extremely irritated after. Like right after sex I go pee and I feel like I have a uti...I feel like I need to go a lot but it feels sore and not much urine comes out. I've started trying to avoid sex bc I know of the discomfort it will bring, and my husband is very mad but he's starting to realize I might actually have a real problem. The past 2 months have been pretty bad. I'm peeing at least twice every hour. I was googling my symptoms and started reading about iC...after google scared me to death with all the cancer symptoms. I realized none of the cancer symptoms all matched what I felt..not to mention I've been feeling these for at least a decade... but I had like every IC symptom. Itbex0oained these weird flare up type symotoms I kept getting. This week I went to the dr for a uti test. He said microscopic blood in urine but no definitive sign of infection but sent the sample for a culture and put me on cipro. I dont feel much relief yet so I think its not infection. I have however been following the ic diet ideas and ive been leavinv out foods and drinks that irritate and that is actually making a difference! Last week everyone kept saying oh you have a uti drink cranberry juice! So I was...and I couldn't understand why it was making me feel awful! It actually started making it burn to pee...like from bladder to exit...I felt like I was peeing fire. And had the worst pain in my bladder like I was being stabbed. My questions are---does this sound like IC anyone else has experienced?? And now that I think I have it, who do I see? My gyno? Find a urologist? I know doctors hate when people self diagnose....so how do I bring up that i am sure this is what has been plaguing me??? Any info or advice would be greatly appreciated. I feel very stuck right now. Thanks guys

 
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Old 03-19-2013, 08:31 AM   #2
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jessica09 HB User
Re: I could really use some advice!!

I would try your primary doctor if they don't seem open to discussing something other than a uti, skip straight to a urologist if possible. It sounds like you do.have ic tho. I used to avoid sex with my bf too and he hated it! Lol but i had to go through 3 different doctors, surgery for endometrisis and tons of testing before i was told basically id have to live with the pain. And after i pushed and pushed, she finally listened she referred me to my urologist. they did a procedure on my bladder and I've been.on elmiron since last year. From my experience with my gyno, who did my surgery, he wasn't interested in hearing my symptoms just wanted to be done with my appointment. If you don't need a referral i would go see a urologist. I hope everything get better for you.soon!

 
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Old 03-19-2013, 01:56 PM   #3
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Join Date: Mar 2013
Location: new milford, nj
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lalaorange5 HB User
Re: I could really use some advice!!

Thank you! I suppose I'll have to start looking for a good urologist. I hate this part but I'd rather have a diagnosis and treatment options then keep suffering these flare ups

 
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Old 03-19-2013, 03:26 PM   #4
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Join Date: Oct 2012
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jessica09 HB User
Re: I could really use some advice!!

I agree with you! I was relieved when i met my doctor and got treatment. I was doing really good and hadnt had to see him in so long and when i finally had to go back, he tried to introduce himself again lol am im like ya your already treating me! But it really does get better. I really dont cook, so i struggle with the diet and i do have flare ups and mainly try to stay away from foods that will make me flare up. Do u find the diet as complatixated as it seems? Lol good luck finding a urologist!

 
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