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  • Smokey
    replied
    hi rebecca,

    welcome to the boards, i am from melbourne. i have had ic for around
    seven years coming onto my eighth year. there is an australian forum you can join us on http://icfriends.forumotion.com/

    Leave a comment:


  • rebeccat
    replied
    Hi Gloria!
    I cant believe Ive met someone in Yeppoon with IC!! Is your GP Julie Burke by any chance? She has told me she has another patient with IC as well.
    I see David Shaker in Rocky as my urulogist, I see him at the Hillcrest, he used to be at the Mater.
    Id love to chat with you more about this!
    Im using lignocaine, heparin and water for injections as my home instills.
    I was doing them twice a week for 4 weeks, now once a week for 5 weeks. He said that is it and if I have more problems to come back and see him again.
    Ive had 2 hydrodistentions and the last one in Oct 2010 that didnt work at all.
    I go all the time at night too, but not as often as you. My worst nights are like 5 times, but usually only once or twice.
    Sometimes I take aloe vera capsules and drink at least 2 urals a day.
    I tyr and follow the diet and cut out spicey/acidic foods as well.
    I'll PM you my email address and maybe we could talk further?
    Im so glad to meet someone in Yeppoon!
    Id love to hear about your trigger foods.
    My main irratation at the moment seems to be uretheral pain, it lasts quite a while after going and drives me nuts.
    I also go very frequently esp, in the morning, every half hr or so.
    I never drink soft drink, alcohol or juice. Only water, but I MUST have 1 coffee in the morning (lots of milk and quite weak)
    So glad you found me
    Rebecca

    Leave a comment:


  • Gloria J
    replied
    Fellow Yeppoon ICer

    Hello Rebecca I also live in Yeppoon and have been diagnosed with IC for 10 years but I also had it for some time before I was diagnosed. I had instils of DMSO for several years but in the end they weren't very effective. I have had 4 hydrodistensions but they also became less effective with each one. Now days I just follow the diet religiously and drink plenty of water. My main problem is frequency, I am up every hour at night and that is on a good night and I go about once an hour during the day, on good days.
    Do you go to a urologist in Rockhampton? That is where I go if I need to see a urologist. You are a brave girl doing the instils yourself, I used to go to the Mater Hospital in Rocky and they did them for me there. What instillation are you doing?
    I also suffer from vulvodynia so I have trouble sitting for long periods. I am 65 years of age.
    Look forward to hearing more from you. Gloria

    Leave a comment:


  • Linda May
    replied
    Ic

    If your doctor don't believe that the IC diet doe's not matter,I think you need to see a new uro. You should stick with the IC diet completely until you can find some foods on the try it list. Any kind of spicey food , Citrus, Caffiene, Tomatoes,ect. Look on the IC diet list and print it out, and follow it to the letter until you slowly find out what foods or drinks will trigger your IC. I wish you the best and welcome you to this forum it is great place to start.

    Leave a comment:


  • rebeccat
    replied
    Hi Rosalie and Linda
    I am in yeppoon, qld. I have had 2 hydro distentions, last one oct 2010 but it didn't work at all!! I have just started with bladder instillations.... So yuck! My first attempt was a complete failure.. But the second attempt was successful.
    I feel quite sad about it actually, can't believe it's so bad that I'm willing to put a catheter in myself. Just hope it works.
    I also take aloe Vera caps n find it helps if I take like 6 a day.
    I'm curious if you guys follow the diet? My dr had told me to avoid spicy foods, which I always have but he doesn't think it really matters. I also pretty much live on urals and get frequent infections.
    I'd love to hear more from you guys and your experiences.
    Rebecca

    Leave a comment:


  • Linda May
    replied
    Ic

    Welcome this forum it is great for info and understanding aways feel free to ask questions anytime sending you warm hugs.

    Leave a comment:


  • Rosalie
    replied
    Hi Rebecca great to meet you. I actually haven't been on the ICN for quite some time. Good to see the Aussie board get a revival.
    I am like you in that I had IC for years and years before getting a diagnosis.
    Hopefully, one day, the medicos will have a better handle on the disease.
    Where abouts in Oz are you?

    Leave a comment:


  • rebeccat
    started a topic Hello Aussies

    Hello Aussies

    Hi,
    My name is Rebecca and I hace neen diagnosed with IC for only 3 years but was a sufferer for much much longer before being diagnosed.
    I would love to meet fellow aussies with this condition as I dont know anyone else who has this! No one has even ever heard of it.
    Just wanted to introduce myself. I am currently just starting home installations..yucko!
    Rebecca
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