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  • #16
    HI sorry to here about your back etc.

    HI I had chronic backache, bladder infections, burning , the lot. what I did is took antibiotics for the infection, or even with no infection , then took diflucan for one month, as soon as that cleared up I had a bladder distension, this took away all my back pain. For sleep I take ambien, for anti anxiety I take paxil, ELavil is better, but it dries out my mouth to much. It may work for others, for pain I alternate from ultram TO fentynl Patches. I have not taken these for 3 months, I just hope the distension lasts two week more, we are traveling to Perth tomorrow, so ill keep my fingers crossed. I wondered if anyone had had a good bladder distension down in Perth by a recommended uro.

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    • #17
      Hi everyone, been away a while, sorry for that. And hi Peta, i'm from brissy. Hope your doing well today.

      I myself have gotten a new job. Retail work, seems fairly cruisy which is good. I'm free to go to the toilet or a break if need be. Not like another place I worked at for 3 days. Way to strict, bladder couldnt cooperate. Though I am standing all the time. Having a little bit of annoyance too atm, just slight burning, irritation and frequency. What does everyone take for frequency? its not one of my main probs (thats burning) but any remidies that help?

      I think this small flare though is due to stress, i've been a bit highly strung lately. I think i need to change meds too. Im on tofranil, but need something stronger for my head and bladder. Need to distract myself, been doing that a little with some retail therapy since I have an income again

      Oh one last thing, Ive been drinking alot of green tea lately, I think that seems to help. I use just dilmah brand i think, tea bags. Even if it doesnt help, i feel refreshed and it lifts my mood too. Just something you may want to try if your feeling down. Has alot of antioxidants and other benifits too.
      Last edited by *Jelly*; 10-25-2006, 01:59 AM.

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      • #18
        anyone living in Perth

        Hi is there anyone living in perth in this group, I have just moved here and could do with a few hints an good doctors, Hope im lucky to find someone Helen, My private e mail is [email protected].

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        • #19
          Hi Helen,
          I am from Melb and have been excellent for about 3 months,and...... now I have a flair. VERY annoyed.
          Interesting that I have run out of Serrapeptase, which I take regularly as an anti- inflam.
          So I can not help you with any info regarding Perth. Best of luck with sourcing info and help in Perth.
          Regards
          Jodi

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          • #20
            Hello everyone, I am Lisa and live in Sydney.
            I see Prof Van Caille at the Royal Women's Hospital and Prof Millard at the Prince of Wales.
            Prof Van Caille is my angel! He was the first doc to believe my supposedly impossible symptoms existed and set out to prove they were, which ofcourse they do! (even if apparently only cats have this condition)
            I highly recommend anyone to his kindness,
            I think the problem with finding good docs is that we seek not only doctors but diagnoticians, the few with the skill to see a set of symptoms and diagnose them and seek a solution even when the exact combination does not exist in textbooks.
            Welcome to all new and not so new Aussies
            I am so happy to be able to meet with you all in here
            hugs

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            • #21
              Originally posted by jodi.b
              Hi Helen,
              I am from Melb and have been excellent for about 3 months,and...... now I have a flair. VERY annoyed.
              Interesting that I have run out of Serrapeptase, which I take regularly as an anti- inflam.
              So I can not help you with any info regarding Perth. Best of luck with sourcing info and help in Perth.
              Regards
              Jodi
              hi Jodi thanks for your reply, Im relly desperate tp find a good uro in Perth. I wondered what serrapetase, if u can send me some info on it if you could it would be great. their dosent seem to be too many Australians with this, have you got skype. this is wer u are enable to actually talk to people and see them over the internett, it is free to download and free to talk. you only need head phones and a camera, aroun 30 dollars. I really miss my support groups, and miss visual contact with people, I dont know if anyone else out there would be interested in this. Anyway sorry your in a flare, do get cold and shivery, and really exausted with it , do have backpain. mine always cones when I ovulate and a week before muy period. Anyway get better soon ove Helen

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              • #22
                Originally posted by lisalau
                Hello everyone, I am Lisa and live in Sydney.
                I see Prof Van Caille at the Royal Women's Hospital and Prof Millard at the Prince of Wales.
                Prof Van Caille is my angel! He was the first doc to believe my supposedly impossible symptoms existed and set out to prove they were, which ofcourse they do! (even if apparently only cats have this condition)
                I highly recommend anyone to his kindness,
                I think the problem with finding good docs is that we seek not only doctors but diagnoticians, the few with the skill to see a set of symptoms and diagnose them and seek a solution even when the exact combination does not exist in textbooks.
                Welcome to all new and not so new Aussies
                I am so happy to be able to meet with you all in here
                hugs
                Hi just wondered if your doctor had any contact in Perth. we have been here two weeks, and I am terrified to go through the whole process of people not believing me again. do u have ay tips an staying out of flares . Talk to you soon Helen

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                • #23
                  Hi Helen,
                  Serrapeptase... you can find out all about it when you go into google. It is an interesting product and definitely has helped me.
                  Now, Are you doing all the usual stuff. I can only drink rainwater or Nobles water. No Chlorine content. Cotton undies only and no g-strings. No acid foods. I am finding diet coke is setting me off . It would be the sugar substitue. No vinegar on salads etc etc
                  You could phone Anita Clark in Melb( specializes in IC)0n 03 94176241 and ask if she knows of someone in Perth.
                  No, I do not have Skype at this stage.
                  Hope this helps
                  Regards
                  Jodi

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                  • #24
                    Hi Helen and welcome to Aus. When will you be arriving?

                    I hope you don't mind but I have just rung Dr Anita Clarke's rooms and spoken to her. She gave me the name of a friend of hers in Perth, who deals in the same illnesses that she does. It is a Jessica Yin and her number is
                    08 9389 1094. Now that number was from 2005 but if it has changed the directory should be able to help you.

                    Just found this online
                    Dr Jessica Yin Urologist
                    Nedlands Ste 15 Hollywood Specialist Centre
                    95 Monash Ave Perth 6009
                    Anita is my urologist and I have great faith in her..she diagnosed me after the years and years of searching for some help. And has helped me to this place where life is now livable.
                    Good Luck
                    Rosalie


                    http://community.webshots.com/user/gypsyrose52

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                    • #25
                      hi from Helen

                      Hi Rosalie thanks for doing that for me . I will try Jessica Yin tomorrow, what meds are u on. I take tramadol for pain, sleeping tablets, ambien. and also lorezepan to calm me down . I was getting terrible panic attacks. Hopefully dt Yin can give me a repeat perscription. I have had Ic for 7 yrs and went through a total nightmare trying to get diagnosed. we moved to Perth one week ago. I just hope I dont have to start explaining it again. We lived in Spain for two yrs and the doctrs there even after doing a bladder distension ,which by teh way helped me., still refused to believe I had Ic. It has been a total nightmare. Hopefully Perth may be easier. Tks again Helen

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                      • #26
                        You are very welcome Helen. I take Endep (known in the US as Elavil) for pain and this gets me through. I feel very fortunate that this is all I need. Whenever I flare up, the old bicarb soda in water usually helps. Otherwise heats pads and ring cushions help too. Touch wood, I haven't needed anything any stronger pain killers for a while.
                        I know what it is like to be on the medico roundabout. My symptoms started when I was a child and at 54 I was only diagnosed a few years ago. IC was never even mentioned as a possibility. It took me stumbling onto this web site, to get the nerve to have one more go with the drs and insist that they refer me to Anita Clarke, who I also found online.
                        Are you holidaying or staying for a short time in Australia? Or have you moved here permanently?
                        Good Luck with Dr Yin. I hope you can get in to see her quickly and that she is what you are looking for.
                        Rosalie


                        http://community.webshots.com/user/gypsyrose52

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                        • #27
                          hi everyone

                          Hi everyone hope u are all well , im reallly interested in everyones story, how thareey think their IC started, mine strted about 10 yrs ago . It began with a bladder infection , that never went away, my diet helps, no tomatoes, fruit, coffee, alll acidic foods. I take tramadol for pain, I was in oxycontin but my symptoms have improven since I had a badder distnsion 6 mths ago. It completely took my backache away for the first time in 10 yrs, It was so nice to feel half normal again. We are now living in Perth, I hope to fnd a support group heret go to, does anyone have one in Melbourne or Sydney, stay well Helen.

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                          • #28
                            Hi Helen,

                            My name is Lorena and I am from Melbourne. My ic started from a single uti also. Then came the frequency and urgency after that. The pain didnt start happening till about a year ago off and on. I have had ic for around 3 1/2 years. I went to three specialists and finally I found a great lady uro who diagnosed my asap. I am on feldene x 1 10mg, and ditropan 5mg x 1. Also I am taking inner health plus one capsule per day. I also follow the ic diet. So far so good no pain and the frequency and urgency have gone back to normal. We do have a support group here in Melbourne the next one is in March. I think Rosalie might have the info.

                            Take care

                            Lorena
                            Formerly lorenab

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                            • #29
                              Helen, my symptoms started when I was a child. I can remember as young as around 10, having bladder pain. I am 54 now and was only diagnosed a few years ago. Fortunately, I had periods where the symptoms dissappeared or flared irregularly and not too often. But I also had years where I went from one doctor to another and still with no idea of what it was, tried many many differing treatments. Now thanks to Anita Clarke and this site, I now have most days pain free and I can pretty much control any flares.
                              There is a life with IC!
                              Rosalie


                              http://community.webshots.com/user/gypsyrose52

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                              • #30
                                Originally posted by Rosalie
                                You are very welcome Helen. I take Endep (known in the US as Elavil) for pain and this gets me through. I feel very fortunate that this is all I need. Whenever I flare up, the old bicarb soda in water usually helps. Otherwise heats pads and ring cushions help too. Touch wood, I haven't needed anything any stronger pain killers for a while.
                                I know what it is like to be on the medico roundabout. My symptoms started when I was a child and at 54 I was only diagnosed a few years ago. IC was never even mentioned as a possibility. It took me stumbling onto this web site, to get the nerve to have one more go with the drs and insist that they refer me to Anita Clarke, who I also found online.
                                Are you holidaying or staying for a short time in Australia? Or have you moved here permanently?
                                Good Luck with Dr Yin. I hope you can get in to see her quickly and that she is what you are looking for.
                                Hi Rosalie,

                                Sorry to come in here but it sounds like you really like Anita Clarke. I'm in Melbourne and saw Anna Rosamillia and was very unhappy. I'll be seeing Daniel Moon (can't get in until 7 March) but doctors say he's great. Wondering if you know anything about him. If that doesn't work out or if IC/PBS isn't his thing I would like to try your doctor. Are you very pleased?

                                Anyone else know anything about Daniel Moon?

                                Thanks:-)

                                Holly

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