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Meeting with UR, Need Advice

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  • Meeting with UR, Need Advice

    Thank God for this Network.....newly diagnosed. I am meeting with my ur nday to discuss IC. He diagnosed me in August 2010. He also has been my doc for several years for my kidney stones. I dont know how to approach him since he seems the "typical" ur with meds and surgerys.
    I was diagnosed via a cystoscopy and a hydro procedure where they stretch the bladder. Ive had cystos before but when i woke up from this procedure WOW....i was in so much pain and screaming to take the cath out! Nurses werent nice to me at all. I then decided to see another ur who is a specialist in IC. Forgive me but he was totally useless. His arrogance turned me off, had no bedside manner, pushed invasive surgerys and had me crying when i left the office. So back to ur #1. Ive taken Elmiron (HUGE side affects, thought i was going to die), peridium, vessicare, oxybutron which made me constipated and had incredible back pain or kidney pain from it. So nothing really works. The only pain med i got was toradol and it was like eating an m&m candy.
    I am scared to death of more hydros, installations and caths. I am so raw and in pain i cannot see any of the above done without being completely knocked out, which the doctors wont do. I have been on the IC diet plan for months with little improvement. This week I stuck to the diet perfectly and was in bed with a heating pad all week. Cant figure it out. I just began taking Cysta Q yesterday and drink Marshmallow root tea. My health insurance runs out april 1st. so i guess i am forced to go natural? I have sleep depravation from getting up all night. And the pain is there constantly 24 hrs.
    So how do you think i should approach this ur? I am so overwhelmed and confused. If i could only get out of pain and start sleeping, i could think a lot better. Any suggestions are truly welcomed. Thank you in advance. j

  • #2
    Hi, sorry for ur troubles. the ic diet works for some and not others. have u tried atarax, elavil, neurontin or their generics? there is alot of info on this site about treatments. and since u cant take elmiron some people go the natural route and take cysta q, cysta protek, bladder ease, whole leaf aloe vera , glucosamine ect. alot of these products are on this site. u also may want to get checked out for pelvic floor dysfunction.IC and pfd can run together. some people are also helped by accupuncture. but I would make sure that they know what IC is and have sucessfully treated IC patients. there are alot of patient resources for financial help with some prescriptions. I think there is a link on this site about that. good luck
    Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

    I have moderate-severe IC

    Currently stopped taking all medications due to pregnancy


    • #3
      So sorry honey you are going through this. Would suggest printing some stuff out just to hand to your uro, to let him know that you know what is going on. Symptoms, pain, flares, whatever you are experiencing. That sometimes helps because then they know they have an informed patient.

      And you never, never have to do anything you don't want. Just politely say no, I've looked into that, or I want to look into that before they start poking me. YOU are the consumer and an informed consumer sometimes makes them a bit more cautious, you don't want to threaten them, just let them know in a polite manner that you are not ignorant and you want to look at literature, etc., before any procedure.

      If you have a good doc, he/she will actually appreciate that their patient totally understands what is going on and they can reinforce what you have learned by yourself, and maybe even be surprised that they have a self-educated patient. Some docs like that, some absolutely do not. If they don't like it and take offense, time to move on. Our uro (no longer see him) actually told us to look stuff up on the net, but not to believe anything! So you gotta use your brain and not be intimidated, go with your gut.

      Wish you much luck in your search for a treatment that will work for you. And if your doc makes you uncomfortable or has bad bedside manner, move on. An empathetic doc is sometimes hard to find, but they ARE out there. Good luck to you, sounds like you are listening to your instincts , continue doing so and you will be fine. Jill, wife of Bob