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  • how is everyone going in oz land?

    I was just wondering how everyone in oz land is going? its been quiet lately. hopefully everyone is pain free.
    Formerly lorenab

  • #2
    Hi Lorena,

    It's been hot in Melbourne so my bladder has been playing up a bit more than usual. And in the hot weather it is so difficult to use a heating pad as it only makes you hotter!

    Hope everyone else is well!
    Kiki

    "...I have spread my dreams under your feet;
    Tread softly because you tread on my dreams."

    W.B. Yeats, 1865 - 1939

    Diagnosed with IC 11/02
    Diagnosed with Type 1 diabetes 2/06


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    • #3
      Same here, Lorena, my bladder hates the hot weather especially when it is humid Grrrrrrrrr!. I can't wait for autumn to roll around.
      Rosalie


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

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      • #4
        Hi, I told holly that her symptoms seemed to be worse on the hotter days. I remember noting this from back when the whole thing actually hit, so I guess you can add her to the list of those for whom hot days just aren't a whole lot of fun!
        Hi, I'm Kev - husband of IC sufferer.

        symptoms - an owee wife

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        • #5
          I also have a terrible time in summer, pain is at it's worst and I will be glad for some cooler weather.
          I guess it probably is because you sweat more and there is less water running thru the bladder.
          Good luck to everyone.


          Ronald

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          • #6
            I have had pain in my bladder all my life I am 33. For the last year my pain had been 80% of the time so bad I can't walk and can't look after my three children and husband.

            I need any help I can get to find that doctor who will listen to me! I don't fit into and bladder diagnosis exactly but the pain is so bad I would have my bladder out if I could find the best doctor for the job I think 33 years of pain is enough and now I'm missing out on my three children.

            Can anyone recommend a docotr anywhere in Australia?

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            • #7
              I am so sorry you are in so much pain. Where abouts in Australia do you live?
              Formerly lorenab

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              • #8
                I am in Central NSW in a town called Condobolin "Shannon Noll" country

                This moring I am in so much pain and so constantly severe and this happens often every day. I will travel anywhere to go to the best doctor even the USA.

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                • #9
                  Originally posted by Hanneke View Post
                  I am in Central NSW in a town called Condobolin "Shannon Noll" country

                  This moring I am in so much pain and so constantly severe and this happens often every day. I will travel anywhere to go to the best doctor even the USA.
                  I'm so sorry for you Hanneke. I dont know anyone now but I will keep my ears open. You might try the US boards where people have had that done. I'm sure it isn't your first choice to have to go as far as the US.

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                  • #10
                    Doctors in usa

                    HI I am living in Perth Australia, if any one wants to know my story, or doctors I have used in the USA, You can contact me on [email protected]. I have been living in Houston, so I have had contact with a couple of experianced doctors there. Does anyone know of a support group in perth. I also wondered why there was so few people on this site from Australia. It would be nice to know how many people there are in Australia with Ic. I am also seeing an IC specialist here for Ic, If anyone needs a doctor.

                    Comment


                    • #11
                      People from OZ

                      To all Aussies!

                      My name is Anja, i am German but will be moving to Australia in September/October.
                      I have noticed that most of you guys live in Melbourne. I will be moving to Tasmania as my Boyfriend ( he is Australian ) lives there.
                      Have any one of you been to the Mercy Hospital ? I have heard that they have IC specialists over there.

                      Is anyone from Tasmania? Any tips on how good the IC Treatments are over there? Does Medicare cover the treatments?
                      I also have Vulvodynia, probably more than IC...any one????

                      Would love to hear from you!
                      ANJA

                      Symptoms started November 2005
                      Diagnosed with IC in January 2007
                      Diagnosed with Vulvodynia 2006
                      Medications since July 2007: Gepan Installations now only every 2 months - Amitriptilyn(Elavil) 6 drops at night - Elmiron 200mg/day, Ranitic150 in the morning together with Desloratodine 5mg - Guaifenesin Capsules 300mg (for vulvodynia), Prelief with critical food
                      Vitamins/Minerals: Neutra C

                      Herbal Tea (Chamomille) 3 cups a day, sit baths with sea salt after sex - Hyalofemme Gel before sex - Multi GynActi Gel after sex - Macrobid 50mg after sex


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                      • #12
                        Originally posted by Hanneke View Post
                        I am in Central NSW in a town called Condobolin "Shannon Noll" country

                        This moring I am in so much pain and so constantly severe and this happens often every day. I will travel anywhere to go to the best doctor even the USA.
                        Hi Hanneke, I'm hollyd's other half (the bloke half).

                        Wow, from what I remember Condobolin is pretty remote. Shannon Noll's some kind of television person, right? Always nice to have a claim to fame. My tiny home town was the home of an International Ploughing Champion and a Darwin Stubby Competition winner :woohoo:

                        It seems we're a bit behind the 8-ball in Aust, the medical fraternity just like to sit back and poo-poo anything places like the US discover or suggest, and pat themselves on the back for doing what was only just relevant 20 years ago. Ahh well, there's always people power Now I think you'll find that out in the sticks, your doctor might be as well meaning as they can be, but just not be up to speed on IC, they in fact may never have learnt anything about it other than reading "Interstitial Cystitis - bladder" in a book at Uni once. (and that's the young ones, the older ones will have read "Severe Bladder Pain - if woman, not important - possible witch" )

                        We've found docs who've heard of it, here in Melbourne, a couple who sure know how to say "that would be IC". What they can do about it? Not so much yet. They can put you on drugs, perform invasive, IC-flare-producing, medical experiments to confirm what, oddly, they were already sure about before they suggested instigating a flare. But they WILL know more than an outback sawbones. We can offer more info if you PM.

                        I reckon, from watching my wife fight the good fight, it is very much worth researching your own material online (eg there's a lot of info right here in this messageboard if you check out the pros/cons of what everyone's doing medication and alternative-treatment wise). It seems that everyone needs something a little different, reacts to something a little different. Docs can't even be expected to know all that!

                        But, if a top-notch doc turns up, you lot will be the first to know! Currently we go to appointments armed with paperwork, ready to teach and inform. Hasn't worked too well thus far

                        Keep informed, keep on sites like this one, there's groups and sites around. Its not a very well understood ailment, and it looks like you'll have to do much of the work yourselves.

                        Those are about the best hands you could put the issue in.

                        Kev
                        Hi, I'm Kev - husband of IC sufferer.

                        symptoms - an owee wife

                        Comment


                        • #13
                          Originally posted by Anjita View Post
                          To all Aussies!

                          My name is Anja, i am German but will be moving to Australia in September/October.
                          I have noticed that most of you guys live in Melbourne. I will be moving to Tasmania as my Boyfriend ( he is Australian ) lives there.
                          Have any one of you been to the Mercy Hospital ? I have heard that they have IC specialists over there.

                          Is anyone from Tasmania? Any tips on how good the IC Treatments are over there? Does Medicare cover the treatments?
                          I also have Vulvodynia, probably more than IC...any one????

                          Would love to hear from you!
                          ANJA
                          Hallo Anja. Yes we've been to Mercy, refer my post above. The main benefit is that the folks there know OF IC, they don't yet have much more they can do about it, but at least they know what it is.

                          I have no idea how Tassie would be for IC Treatments, but Tasmania is smaller, less populous, more remote, and you might struggle to find specific help there. Its a 1hr plane flight from Melbourne though, so there might be options that way.

                          Does you boyfriend have solid work in Tasmania? It is a tough place to find work if you don't already have it. Hopefully he's well settled. Beautiful country down there. Make sure you have an internet connection though, as you might find it hard to find locals who will understand your condition. Communities such as this one are going to be your best bet.

                          Medicare? Well, general practitioner consultations are often covered, depending on which doc you see. That's very handy here because to some extent, with the lack of knowledge about IC, one doc is as good as another, cause all they can do is print prescriptions for you! I can't remember how the specialist consultations go with Medicare, but I think they cost a lot, and Medicare does give you back about 2/3 of it. I could be wrong, Hollyd will correct me if I am.

                          Ok hope that's a start! Good luck.
                          Hi, I'm Kev - husband of IC sufferer.

                          symptoms - an owee wife

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                          • #14
                            wanting to start a support group in perth

                            hi I rang Melbourne support group, talked to a nurse practitioner there she was really busy,and dident have much time to talk. I really want to start up a support group in Perth. She told me that there used to be one here but no longer exsisted, If anyone goes to the support group,or knows of anyone in Perth please give them my [email protected] always willing to talk and share my experiances with anyone, please feel free to email me.
                            Helenxxx

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