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  • Nachomama
    replied
    Hi Tracy:

    I can totally agree with you about the isolation this disease can create. I keep hearing from my friends and family> "I just don't understand why they can't figure your bladder thing out." As if it were as simple as waving a magic wand and "POOF", we're all better. I wish non-ICers could understand that not everything is within our control. I think only people with other chronic diseases can understand, even if it's just a little. I hate hearing "You have what?" when I talk about IC. Then, inevitably, they say "Never heard of it." As if to dismiss the disease as a hoax. It can be very frustrating for everyone.

    Luckily, we at least live in a time when the medical community is waking up to the fact that this is a very serious disease. Imagine having this disease 30 years ago! Or even 10 years ago! I am grateful to the ones who have come before us and really fought the battles for the little bit of recognition we get today. IC still needs so much more.

    Anyway, it's good to meet you! You're in the right place. >Tina

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  • sandram333
    replied
    <img src="graemlins/hi.gif" border="0" alt="[hi]" /> Welcome sorry your here but glad u found us take care and the best of luck to a happy no flare day! What we all hope for! <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

    Leave a comment:


  • Missie
    replied
    Hi! I'm sorry you have been having such a bad time. I wish u the best of luck and a speedy trip to remission!!
    I'm glad u found this network...it is great, supportive and very informative.

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  • Susan Butler
    replied
    Hi Tracey,
    Bless your heart what a story.
    So glad you found us.
    Susan

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  • Kara
    replied
    Tracey,

    I'm so glad you found support and something to help your bladder! Your story was encouraging. I hope you cointinue to get some relief for you bladder!

    Best Wishes,

    Kara
    <img src="graemlins/blink.gif" border="0" alt="[blink]" />

    Leave a comment:


  • Tracey H
    started a topic My Story

    My Story

    Hi I'm Tracey, aged 33 and from Birmingham England, in August 2000 I was due to go into hospital for a knee operation and had to have a pre-op check, this showed I had blood in my urine. I was not in any pain at this point apart from back pain which I had suffered for on and off since I was 15. My doctor thought I had a kidney problem and sent me to the kidney consultant for tests, I spent the next 11 months having all sorts of tests, but although the blood in my urine remained the tests showed nothing. In the end my consultant asked whether I had seen a urologist (which I hadn't) so he referred me to one for a cystoscopy. As soon as the camera was put in the doctor said there was a problem with my bladder, she wasn't sure what it was but I would need to be anaesthetised for them to have a good look. I had my op on 13.12.2001, and was certainly not prepared for what I felt when I came round. I thought they were going to do a biopsy and have a general look around, but they ended up measuring the capacity of my bladder, stretching my urethra, taking various biopsys and causing me the most incredible pain. I came back home the same day, it stung so much when I had to pee, but 2 days later it was starting to ease. Then I got a water infection and everything became terrible again. I started haemorrhaging and had to have bed rest to get this to stop, it was that or go into hospital and being so close to xmas with 4 boys around me, I said hospital would have to be a last resort. Anyway the bleeding stopped, I went back to my consultant a few days before xmas and was told I had IC. I knew nothing about it, I thought that going to the loo every 10 minutes was because I had an extremely weak bladder, I thought this was also why I had to get up 5/6 times a night. I managed my symptoms by not drinking, stupid I know but it was the only way I could stop peeing. At this point I was put on different antibiotics to get rid of my infection, I had a terrible xmas because of the pain, my husband was an absolute diamond!!!!! A stand in doctor would not do anything to ease my pain, and I had to go and see my own doctor after xmas who gave me potassium citrate to ease the pain, this stuff is dynamite at easing pain. I had been incorrectly told to drink cranberry juice, which I found out was making me worse. I discovered the UK site after xmas when my consultants secretary told me there were support groups for it. I started heparin installations in February - this was a very difficult time, it hurts so much and at the point I was thinking of giving up, I was advised by other sufferers to stick with it, and I'm glad I did now, my frequency is much better, I can go about 1-1 1/2 hours between toilet visits, unless I am having a flare when my visits are more frequent obviously. My nighttime visits eased, but these have started to build back up again, rarely I get up 1-2 times a night, but more often about 4. The worse thing is the pain, I never had any bladder pain before, but now suffer with a dull ache constantly, which at times becomes much worse. I still suffer agony with my back, but just to not have to keep going to the toilet ever 10 minutes is a blessing. I have had so much advise from other sufferers and have helped new sufferers myself. I get down at times like all of us, wonder why the hell this has to happen to me at my age, but do try not to moan about it.

    Well everyone, that's my story. The one thing is that people who were interested initially stop being after a while, when it keeps going on and you have to go to the hospital every 3 weeks, people stop asking how you are, I've found it difficult that so many people don't understand it, my cousin tried endlessly to help by telling me to drink cranberry juice, she just didn't understand I couldn't and that's it isn't it, people don't understand the difference between our condition and bacterial cystitis.

    Well, to all of you I wish you a happy life, and hope any pain you may have is as mild as possible.

    <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" /> Best of luck everybody - Tracey H
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