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My Uro Trail

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  • My Uro Trail

    Not only is it hard to find a Urologist who understands IC the problem becomes more difficult
    when a firm changes HMO plans, which prompted every change noted below.

    U-1 taught me how to get information out of anyone. maybe it was the rigid (No.2 pencil like) cystoscope penetrating my stricture. i remember him saying - 'so you say you feel faint..., no problem, you are already lying down.' U-2 explained his diagnostic method by stating -'when you hear hoofbeats expect a horse, not a zebra.' those horses became a stricture operation followed later with a turp,
    all blended with antibiotics. U-3 said U-2 was doing just fine and prescribed Elavil. U-4 performed another stricture operation yet persisted and found I.C. with the potassium test. did a hydroextention and prescribed DMSO instillations and Elmiron (at that time purchased from Canada). the instillation process was traumatic due to scar tissue from the operations. U-5 finally suggested a shot of whiskey to help tolerate the intrusion of the cathater for the instillation. U-6 said my instillation process was barbaric and why don't you take L-arginine. He was right. U-7 said 'i don't want to do it. my office will smell like garlic.' he did, though. back to U-6
    who recommended this website. Also, the L-arginine has replaced the instillation of DMSO.

    Am I grateful, you bet. I believe each 'U' was doing the best with what he had. My problems have been acceptance of my limitations and my unwillingness to share this information with others. In 1988 a colleague and I crossed the street to the doctor's office at the clinic. He was a little dizzy. I was in great pain and ready to meet U-1. My friend died six months later with a brain tumor. Yes, it took 6-7 years to diagnose my I.C. And Yes, I lost important time with my family, and created additional stress. Yet, I am thankful that we still have today, that we can still share our love.

    Peace to you.

  • #2
    Welcome to the ICN.
    You have been down the road with the many Dr.s that many IC'ers go down. The insurance situation adds to the many Dr. changes people have to make at times. It sounds like you are getting the treatment you need for now. If you read our site you will see there are many options and hopefully new ones in the future.

    You are so right,as bad as this disease can be at times we are all still here. It is not easy and many have it much worse than I do but I am grateful to have this when there could be so many other terrible things to have.

    Learning all you can will help you become a partner with your Dr. in your treatment and that is very important. Good Luck to you and again welcome.


    "Life is what happens when you are making other plans" John Lennon

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    Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

    "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."


    • #3
      Hi and welcome, you certainly have been down a long road with your IC. I am sorry about your friend, and it is quite true, we are all still here with our family and friends and able to love them. I have learned a lot from living with IC, and it has made a big difference in the way I approach life in so many ways. In a way it has been a blessing to me. Take care and good to see you join this great IC family, welcoming hugs Iris hi grouphug
      Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


      • #4
        It seems that we all have to run around to multiple doc's, which is a major pain, but we have to do it to live. After kidney stone removal was when my problems started. After first symtoms it was only about 4-5 mos before I was dx'd with IC. My first uro made the dx and started me on Elmiron, hydroxizine and elavil, nothing for pain. I couldn't tolerate the hydroxizine and elavil (read zombie). Went to family doc, still no pain meds. Added dicyclomine to the Elmiron. I went to a second uro, same opinion. He did not add any meds but told my family doc to refer me to a Pain doc. What a long trip it was, but finally got a doc that understands IC, and knows what to expect. He started me on ultracet, but I cannot take them. They make me shake and sweat. Now we are trying Darvocet at varying doses until we get it right. I now take despirimine, elmiron, dicyclomine and still on Macrobid. It is such a relief to have a doc that listens and understand.
        Hope this finds everyone in good spirits.
        "If it ain't broke, it must not be at my house!"


        • #5
          Hi. hi I don't think we've met. I'm Melissa and you can pm me anytime. We're all here for you.
          "Life is 10% what happens to you and 90% how you react to it"

          Read my story at: