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  • help!!!!!!!!!!1

    had my appointment cancelled again!!!!! where do i turn? tried everything i can think.. nobody interested! only place that will do it.. only this one lady does it.. shes off now so have to wait a month (as she only works one day a month for treatment again) really struggling

  • #2
    Re: help!!!!!!!!!!1

    can't believe posted this up and not one single person has taken the time to reply or care.. what's the point in being part of this forum??? people read messages and don't reply? especially when the person has wrote help!!!!! and is clearly in a bad place and needed support.. please admin can you delete my account.. and this thread thanks.


    • #3
      Re: help!!!!!!!!!!1

      Here you go.I can't believe you have to wait so long for your treatment. Any chance they could teach you how to do your own instillations? I know many people here on the forum do theirs at home.I am sorry- you must be beside yourself.


      • #4
        Re: help!!!!!!!!!!1

        I am so sorry . Waiting is horrible.. We can have long waits in our medical system here in Canada.. this link is to healing Interstitial Cystitis Naturally on facebook..Maybe someone on there is from the UK and can give you better advise then I can.. Sure hope you can find relief..
        God brought me to it, He will bring me through it!!!

        Diagnosed 2003
        by cysto/hydro
        Elmiron took almost a year- made me sick, caused diarrhea
        Pyridium -Made me sick
        Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
        Tried DMSO instill- had 5 out of 6
        Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
        Cysto/hydro April 6th 2011-- on expansion only hold one cup
        IBS/ IC
        High blood pressure meds and Crestor
        Metformin (prediabetic)
        Sinequan (depression)


        • #5
          Re: help!!!!!!!!!!1

          thankyou for your replies i've already was offered this then they decided no and didn't offer it me.. so i'm stuck in the same boat again!


          • #6
            Re: help!!!!!!!!!!1

            Hi laylay,

            Yes sometimes it does take time to get a response... as we all have very busy days and nights at times. I'm caring for two very elderly parents who have me running in circles most days which is one reason why I can't get on here as quickly as normal. I'm doing the parenting now and it's intense.

            #1 - We have a database of providers on our main website section -

            #2 - Have you watched our video series ... there are two you must watch so that you can learn what your options are besides bladder instills. Please watch the most recent two - The Six Steps of Treatment and The Five Subtypes for IC -

            #3 - Make sure you read the educational section of our website especially the treatment area!

            Hugs and remember that you really aren't alone here.

            Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality.

            Looking for books, magazines & reports on IC? Please visit the ICN Shop at: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

            Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.