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I am VERY ****** OFF!

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  • I am VERY ****** OFF!

    My urologist who gives me about 3-4 days of pain meds per month for flare ups decided this month to stop. He says I need to get another hydro or bladder cocktail. I told him (or rather his nurse) that there was no way in hell that I'd ever get another hydro as that made everything worse and that there is no need for a cocktail if the meds work for my flares (which are minimal). I maybe get flares once a month or so, so the narcotic use is minimal. I feel that he just wants to get money from me...AND to just stop prescribing because you want to...unacceptable!

    Just wanted to vent.
    Your Friend,
    Michelle

    Diagnosed: 10/16/09

    Elmiron, 100mg 2x per day
    Imipramine, 10 mg per day
    Diazepam 10 mg for sleep
    Zyrtec
    Zovia, birth control (ongoing-no periods)
    Probiotics
    Hydrocodone, 2 pills a day (at any time of day)

  • #2
    Some ICers find they do fine without pain meds if they do instillations --- You may want to consider it as an option. The other option is to see a different urologist for a second opinion. Many ICers do their own instillations so there would be no benefit to the doctor ordering those.

    If your flares are not frequent, have you considered keeping a diary in attempt to find what is bringing on a flare?

    Sending warm hugs,
    Donna
    Stay safe


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    • #3
      I totally agree with donna.and group hug
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      • #4
        As it would turn out, all you have to do is call your PCP and they will prescribe the medication. It didn't hurt that she hates my uro and thinks he's a total tool. So, we're going to pick a new one together.
        Your Friend,
        Michelle

        Diagnosed: 10/16/09

        Elmiron, 100mg 2x per day
        Imipramine, 10 mg per day
        Diazepam 10 mg for sleep
        Zyrtec
        Zovia, birth control (ongoing-no periods)
        Probiotics
        Hydrocodone, 2 pills a day (at any time of day)

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        • #5
          I agree. I think you should totally have a say in your treatment plan. If its working for you and its only once or twice a month then you shouldn't be "forced" to have them. Maybe on down the road you'll want to revisit the idea of instillations if the meds don't work.
          Like Donna asked, have you been able to figure out something that is causing them?
          Cindi


          Gelnique for frequency/urgency - works great
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          Prilosec, continuous birth control pills
          synthroid .088mg, mucinex-d, restasis

          Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

          Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

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          Great treatment flowchart on page 19 of the pdf

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          • #6
            Definitely keep a diary, what you ate, drank, activities, peeing, everything, and maybe you will get an idea. We just keep a cheap legal pad in the bathroom. It does help to narrow things down. As many have said on here, uros are not likely to prescribe long term pain meds, and hopefully you have an understanding GP or NP who will help you.

            And I want to put this question out there to Donna and Jill and all the others. Why don't the uros help their patients with the pain of this? Are they more regulated than other docs? Our uro as well would not prescribe after 2 weeks told us to see our GP, he washed his hands of it. What is up with that, does anyone know? Just see it on here over and over, it is frustrating for new ICers. Feel bad for folks who have to beg for relief. Jill, wife of Bob

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            • #7
              For me personally I have never had luck with a URO. I go to an OBGYN for help with HYDRO and PCP for other help and pain meds. Maybe I just found one that was a bit loony the first time and never looked for another. My bad. Again: People with chronic pain take pain meds to live their lives to the fullest. Addicts take pain meds to escape life's stress. I wish Doctors would understand this. Some do most don't. I hope you find help soon. Pain rolls down hill like a snowball. Hugs, Ziggy

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              • #8
                Originally posted by bob04951 View Post
                Definitely keep a diary, what you ate, drank, activities, peeing, everything, and maybe you will get an idea. We just keep a cheap legal pad in the bathroom. It does help to narrow things down. As many have said on here, uros are not likely to prescribe long term pain meds, and hopefully you have an understanding GP or NP who will help you.

                And I want to put this question out there to Donna and Jill and all the others. Why don't the uros help their patients with the pain of this? Are they more regulated than other docs? Our uro as well would not prescribe after 2 weeks told us to see our GP, he washed his hands of it. What is up with that, does anyone know? Just see it on here over and over, it is frustrating for new ICers. Feel bad for folks who have to beg for relief. Jill, wife of Bob
                I think it comes down to liability. In years pasts before pain management Drs. the Drs. didn't have much choice. Now since pain management Drs. are around, many much prefer them to handle the pain aspect of it. I know my uro would not prescribe anything not directly in the urology realm. I had to go to a different Dr. if I needed anything else.

                There are also a lot of regulations now over the narcotics and again I think they just want the Drs. that deal with this all the time to handle the pain aspect. They may also feel that the pain management Dr. may have more options to give you than they do.
                Jolene

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

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                • #9
                  So true Jolene, but what a shame. If the uro diagnoses, he/she should follow the treatment protocol, which includes pain management. Know when my Dad was DXed with stage IV prostate in '91 his uro bent over backwards to give him anything he needed to get through his treatments, symptoms, etc. Of course, that is a different situation, but sometimes think the uros need to understand the pain of IC, and suppose that regulations vary state by state. It is just frustrating for some to have to doctor shop, and sometimes it makes one look like a drug seeking addict. ARGG, feel for those of you who have not found an empathetic, knowledgeable doc or NP. Hang in there, they ARE out there somewhere. Jill, wife of Bob

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