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  • Left Behind

    I feel like I'm backed up against a wall with no way out . . .

    My urologist's ARNP has been handling the majority of my case. Together we have tried many, MANY, MANY different medications, treatments, therapies, etc. Everything from Elmiron, to antidepressants, to two different medications in the form of instillations, to sticking a Valium up my vagina every 8 hours (which I dutifully did, even though I found it a bit ridiculous ). I did them all. I didn't ask questions (except those regarding how to administer the meds). I just took it and tried it and reported the results (including bringing pictures I took of the blood clots I dropped in the toilet after one of the instillation medications went a bit ca-ca -- little Quantum Leap reference lol).

    So after several months of failed treatment/pain management attempts, she started writing me for Percocet. I didn't have to sign a pain contract (though I would have without a second question). I didn't have to beg to get refills. I was never made to feel small or like I was some kind of addict.

    I have been on the Percocet for, idk, over six months now. It's improved my life greatly. Then at my last visit this uro's arnp revealed to me that she has been laid off. She thinks it's office politics (because she is, mysteriously, the only one being laid off). She said that none of the other docs in that office will write me for Percocet. (Which is something I experienced firsthand at the visit before this one, when the uro doc who is over her took her caseload for the day because she was out sick. He made me feel small, and useless, and like a doper because I asked for a Percocet refill. "This is the only time I'm going to do this, do you understand that?" Yes, Dr. Okay, Dr. I'm sorry, Dr. Would you like me to roll over and lick something now, Dr.?)

    She gave me the number of another urologist in the area, but said she didn't get the "warm fuzzies" from that doc. She also gave me a number to another uro's arnp in the area. She said the patients of that arnp would follow her anywhere, which gave me hope . . . but she said she isn't sure how hands-on the urologist is going to be with my case in that (second) office (meaning she doesn't know if the arnp will be my primary caregiver like she was, or if the uro doc will be leading the way). She said she's pretty sure neither of the offices she recommended will write me for the meds I'm on currently.

    So IDK what to do . . . I DO know what works for me. I also know what doesn't. We've tried everything short of bladder removal (which I told the arnp I wasn't going to consider, being that I'm 25 and ride the bus to get everywhere; maybe if I was 80 and had a car . . . -- I think that post is on this site somewhere still if anyone wants to look at it).

    I feel trapped.

  • #2
    I'm sorry you are going through this. I think so many of us who require pain meds for our IC have been through similar situations. It sounds to me like you might be ready for a pain management doctor. Do you have one in your area? Would she write you a referral? Pain docs are used to writing for pain meds and aren't near as scared of it as other docs are. Also, I printed off info from this site from Dr. Brookoff that talks about the IC patients right to pain control and took it to my first uro who was scared of pain meds and not sure I needed them. He prescribed them for me until I could get in with a pain management doc in the area.

    I hope you are able to continue to get the help you need!
    Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
    _____________________________

    DX: IC - November 2002 after hysterectomy
    Interstim implanted March 2006 - died May 2011
    Interstim replacement June 2011
    Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
    Docs: Pain management doc, urologist, family practice

    Comment


    • #3
      Originally posted by momw/ic View Post
      I'm sorry you are going through this. I think so many of us who require pain meds for our IC have been through similar situations. It sounds to me like you might be ready for a pain management doctor. Do you have one in your area? Would she write you a referral? Pain docs are used to writing for pain meds and aren't near as scared of it as other docs are. Also, I printed off info from this site from Dr. Brookoff that talks about the IC patients right to pain control and took it to my first uro who was scared of pain meds and not sure I needed them. He prescribed them for me until I could get in with a pain management doc in the area.

      I hope you are able to continue to get the help you need!


      I have received a referral to a pain management clinic in the past. The clinic doesn't write for meds, they make a recommendation and then it is up to your doc to write you for whatever they see fit (whether they choose to follow his recommendation is up to them). He recommended my arnp write me for methadone (which she did, without hesitation). I took that for like three days and gave it up. It made me sick and sluggish. I needed help walking across my bedroom to the bathroom to use the toilet.

      But you bring up a good point (and one I've been considering for a while) -- going back to the pain clinic (or asking for another referral from my arnp to get back) and seeing if they can/will help. Maybe I'll have to go back on the methadone and just be sick on top of the IC for the rest of my life . . .

      Comment


      • #4
        So sorry that you aren't getting much help on the pain issues. I live in Canada and have a wonderful Family Doctor who has had me on long-term morphine, plus short=term morphine. I've found, in Canada, the URO's really don't like to write out prescriptions for narcotics, seriously. But if you can get one from your family Dr., it might work out better for you. Good luck and let me know how you make out...........curlette/Patty
        Hugs,
        Curlette

        Drugs I use now:
        HM Contin 12mg twice daily
        2 mg Dilaudid for breakthrough pain
        Temazepam for sleep
        CES orally

        Drugs I have used in the past:
        Elmiron
        Elavil
        Gabapentin
        Vagifem
        Lomotil
        Ativan
        Buscopan
        Demerol
        Flexeril
        Way too many to list!!!!!

        Medical History:
        Have had L4 laminectomy, L4,5 & S1 discectomies, cholecystectomy, appendectomy, gall bladder removed, nasal surgery for accute sinusitis, severe,endometriosis resulting in a total hysterectomy. Also diagnosed with IC, IBS, severe spinal stenosis, severe osteo-arthritis, I wear hearing aids in both ears due to an earlier "abusive marriage". I have Hepatitis C Type 1b, have had this for over 3 decades, this has affected my liver and immune system. Had a blood tranfusion when I was in the Middle East and we think that I got the Hep C at that time.They buy the "blood" there, and as it was so many years ago, they didn't even know the disease existed.I have lost over 60 lbs since my botched hysterectomy where they had to go in again and remove 4 feet of my colon where they had mistakenly stapled it through. I've shrunk from 5'9 to 5'6 because of the osteoporosis. When they first diagnosed me with IC, they found out that my bladder is only 40% the size of a normal bladder, which explains why I have to pee so often, even aside from the IC! I Have had two hydrodistentions, so far, but will need more on a regular basis. We all need to have faith that they will find a cure soon.
        I believe that if we can reduce our stress, learn better ways to cope, we may have a better chance of dealing with this!!!

        Comment


        • #5
          Originally posted by curlette View Post
          So sorry that you aren't getting much help on the pain issues. I live in Canada and have a wonderful Family Doctor who has had me on long-term morphine, plus short=term morphine. I've found, in Canada, the URO's really don't like to write out prescriptions for narcotics, seriously. But if you can get one from your family Dr., it might work out better for you. Good luck and let me know how you make out...........curlette/Patty


          My general practitioner's office (aka family doctor) has a no narcotic script policy . . .

          (P.S. I'm a resident of the USA)

          Comment


          • #6
            Most pain clinics are going to want to do a long acting pain med and only use the short acting for break through pain. There are many others besides methadone though. It's just the cheapest. The one I take is a once a day pill and I don't have any side effects at all.
            Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
            _____________________________

            DX: IC - November 2002 after hysterectomy
            Interstim implanted March 2006 - died May 2011
            Interstim replacement June 2011
            Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
            Docs: Pain management doc, urologist, family practice

            Comment

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