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    Is there anyone out there from South Africa that has IC? I can't believe that I am the only one that posts on these message boards. Please someone, ANYONE - I would be so grateful to hear from you. Hugs, Blossom.

  • #2
    Hi Blossom I'am Barbie,good to hear from someone in Africa.I'am totally thrilled.You know we are not the only one It's a touchy topic . You know what I mean.I have had this for over twentyfive yrs.It took me this long to find out about IC.I have to have my urethra dilated at once a yr. I have to be put under general asleep ,because it is too painful to the Cystoscopy awake.A local just does'nt get it .There is a lot of scar tissue in my urethra. So I've been dealing with painful urinatin all these yrs. .It helps to find the right Dr.too I take Detrol.It's hard to find a Dr. to give you the right pain med. It sucks because they don't know how much pain we suffer.They are to darn concerned with the word dope. Even our Surgeon General has announced that Drs. are not giving their patients enough pain meds .They have the power over us ,even though we pay them. So they really work for us . My husband and I have fired Drs. before. [img]smile.gif[/img]


    • #3
      Hi Barbie, thanks so much for replying. Sorry you have been having so many problems finding the right doctor. I have the most wonderful uro in Johannesburg - where about in Africa are you? People come from all over the country to see him and I would be happy to give you his details. I have probably had IC for many years and only when I had gynaecological problems did I go do my gynae who immediately said my pain was bladder related, sent me immediately to a uro and the following week he diagnosed me under anaesthetic with IC. I take amytrpyteline every evening which has worked wonders for my bladder and colon and have been on a course of DMSO instillations. I do have nasty flares but the DMSO's and the medication has helped me tremendously. I also have a supply of pain killers given readily. Please let me know where you live - as I said, my uro is wonderful as well as being sympathetic, understanding and very supportive. Thanks again for replying. Warm hugs, Blossom.


      • #4
        I was born in South Africa and lived there for the first eight years of my life. My ancestors came from Europe and settled in South Africa. My extended family still live there, however my immediate family is here with me in the US. Anyways, I was wondering how they treat IC in South Africa (I'm well aware that South Africa's medical treatments are sometimes more advanced than here in the US).
        current meds:
        cytotec 200mcg twice daily

        ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

        dx: hashimoto's thyroiditis 1998
        dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
        dx: endometriosis 2003
        dx: innapropriate sinus tacchicardia 2005

        meds tried but failed:
        elavil (6months)- severe tachycardia
        elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
        a bunch of others

        Me and my best friend's baby (also my Godson!)