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  • Article by doctor that some may want to read

    A link to an article written by a doctor who has treated interstitial cystitis can be found at http://www.kevinmd.com/blog/2011/04/...situation.html It is sort of frightening. From a doctor's point of view what is generally happening to the pain treatment of IC is something that I have been researching, and the future availability of pain medication is something that I wouldn't want to count on. While the prescribing physician may alway be willing to go along, if that physician retires, or quits his or her practice, it can be quite a different situation finding a new one. I live in a state when pain meds are virtually impossible to obtain for IC's, and I starting researching other states, and their policies. The American Pain Institute has posted an open letter addressing the situation. It is at http://www.americanpaininstitute.org/letter5.html

    I would personally like to just find a really good doctor that will work with me and help me to continue my treatment, with or without drugs. I have considered going back to doing instills, they did at least offer some reflief.
    My urologist who is the doctor listed as the recommended urologist on this forum just recently told me that "he has done all that he can do." There are a lot of other therapies that he has not tried, and I now have to find another urologist, somehow.

  • #2
    What my retired doc said to do

    I don't know if anyone will see this but----- I wanted to share my thoughts on my IC situation more from a hopeful thought that someone else can relate or has heard this from their doctor. When I was struggling with my IC, not knowing really what was wrong with me. ( I'm a male currently 60 years old ) I had been seeing a urologist for sometime and he was really just following the decision tree that most urologist would do. He heard my symptoms and went down the road assuming I was having prostate issues. This started in my late 40's. I'll skip to the point here. After this urologist had not been able to help me even with surgeries on my prostate, I began to feel like I needed to see a more experienced urologist. I live in Northern California and did some research and heard some pretty good things about the chair of the Urology Dept. at UC Stanford. A Rodney Anderson MD. He had even co-written a book called "Headache in my Pelvic" which I was impressed with so I called and asked if he would see me. His office staff warned me that he might be retiring sometime in the near future but they gave me an appointment and several appointments and a "lets take a look" surgery he discovered my IC. Great, at least now I know whats wrong with me. He advised me to take the elmiron for the next year and said that I should hold off on urinating for as long as I could measuring my urine each time to try and increase this amount. His logic was that in this process I would be stretching my nerve endings and allowing me to go for longer periods between urinating, also allowing me to sleep for longer periods. I started doing this for about a year with limited success but eventually I needed to see another urologist as Dr. Anderson was retiring. My new urologist was totally against me holding off urinating. I still don't know who's correct here. Has anyone ever heard of this?

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    • #3
      Yes. It's usually referred to as bladder retraining. Most of the material I have read recommends against this when a patient is in pain. Are you still on elmiron? It can take six months or more to become effective --- and some have found that it takes a year.

      Sending healing thoughts,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

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      • #4
        What my retired doc said to do

        Thanks Donna for your quick reply, I was on the elmiron for a year and I had no significant change in my symptoms. I was told by my doctor that if nothing improves in a year them the medication probably would not help and to stop taking it. I did, but with my new doctor he not only disagree with the holding in the urine and stretching the bladder wall but felt that stopping the elmiron was not okay either. He convinced me to start taking it again twice a day. Well the bottom line is I started getting a little better with my pain symptoms. I was still getting up and down all night urinating but he also added flomax for my flow issues ( I have the flow rate of a 85 year old male).
        I now am wondering about two things, one, should I try and stretch the bladder during the day when I am fairly pain free, Two, I am occasionally taking ibuprofen 400 mg along with my other medications before bed and I am getting some relief with pain at night. I know better then to ask my urologist about the stretching thing but will ask about the ibuprofen. Any thoughts? Patrick

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        • #5
          what my retired doc said to do

          Donna I read your story, You went through some difficult times for sure. My brother-in-law lives in Coos Bay/Northbend area of Oregon. I didn't know about some of the things you had in your travel bag of IC, thanks Patrick

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