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  • confused- new doctor

    I finally broke down and saw a new uro yesterday. It's been three years since I last saw one. I had a couple of years of remission but now....definitely back with a vengenance. The new uro told me that he's reluctant to diagnosis IC but I may actually have it. This was after I told him that I had been diagnosed by another uro with Classic IC. So, he's recommending that instead of my old treatment of Atarax, Detrol LA and Pyridium, that I do the DMSO instillations. He says it's the gold standard for treatment. I'm not crazy about the idea of that but willing to try anything right now since my regular doctor (also new) is less willing to prescribe pain meds. Can anyone share some thoughts about this strategy? Does it really help with the pain?

    Thanks,
    Julie

  • #2
    Julie, if the new uro is not saying that you have IC for sure I would have your records sent from your old uro to your new one. That will show him what you had done and what the found.

    I went to a new uro after my old one removed endo that was growing through my bladder. When I started w/ my IC symptoms I knew I didn't want to go back to the first uro (horrible bed-side manner). When I told him about the endo growing through the bladder the first thing he wanted to do was get those records.

    I can't answer the questions about the DMSO. My uro said that if the meds he put me on didn't work for me then he might try it with me. From other posts that I've read it seems like the instill itself can hurt. My uro said that's not usually the case w/ his patients but if it hurt me then we would discontinue it. I know there is a section here about DMSO maybe you can read some old posts and see what other people's experiences have been.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

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    • #3
      HI Julieann
      I don't want to misjudge your new uro, but I've never read here in the years I've been posting that DMSO is the "gold standard" for treatment. In fact, I have more posts about DMSO being very painful and making some people even worse than they were before. There is also research that DMSO can harm the bladder in the long run. Not saying that they wouldn't help you or haven't helped others, but it seems that rescue intillations are what are used more commonly now. But, as a first line of defense, I would insist on trying meds that worked for you before, in additions to ones you haven't tried. Did you have to have instills before? Instills are invasive, can cause UTIs and other discomfort, and are money makers for the doctors who do them in office. Sad, but true. Again, I'm not saying they are a bad thing, I am considering the rescue instills myself, but ANY doctor who wants to jump right into DMSO instills without trying meds that worked for you before or any of the other standard protocol meds, or rescue instills, first, I would have a chat with him and say that these things worked for me before, I'd like to try some of these things again and possibly some other things, and if he's only willing to give you DMSO instills, I would say, I'm sorry, I don't think this is going to work out, walk right out that door.
      Just my humble opinion. Best wishes.
      Last edited by Briza; 06-13-2007, 08:46 AM.

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      • #4
        DMSO " WAS" the gold standard years ago. Just the other day I was talking to my neighbor who said that years ago her friend was diagnosed with IC and her doctor at the time was a young guy and this was when DMSO had just been recognized to help IC. My neighbor said that this cured her. She had the treatments and never had any bladder issues again afterwards. Lucky her.
        But now, DMSO is not the popular thing it once use to be ( as there was nothing else back then). I do think DMSO does help some people alot, but also some people get worse from it. It all depends on the person I suppose. Have you done the heperin lidocaine instills yet? I do these and they do help me. I have heard they are more tolerable than the DMSO.
        That is the thing with some doctors, they have their own opinions and belief's. If this doc has his mind set that DMSO is the only way, then you may not be able to change his opinion, even if it is wrong. I think all doctors should have an open mind when it comes to this disease. Not everyone will respond the same way to every treatment. I had a urogyne who had me doing heperin,marcaine, and biocarb and kennalog instills. It gave me bad urine retention and was not helping me much. She would not budge, she said this is what works. I kicked her to the curb and found a different doc fast.
        IC is not all black and white, it is a disease that effects every individual differently and should be looked at with an open mind.
        If you decide to do the DMSO, I really hope it will help you and give you relief. But if this doctor is unwilling to be open to different things, I would look else where.
        Jen

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