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    ICNDonna
    ICN Staff

  • ICNDonna
    replied
    Re: Dr's who refuse to prescribe medication?

    It's good that you have a doctor who is willing to work with you to help with pain control.


    Donna

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  • Richard B
    ICN Member

  • Richard B
    replied
    Re: Dr's who refuse to prescribe medication?

    About 2 years ago, my wife had shoulder surgery for a frozen shoulder. She had received a prescription for Tylenol 3 with Codeine. For grins during on of my flares, I took just 1. Within an hour, things started to fill better. With 2 hours, the pain was pretty much gone.

    So, last summer, after having completed my wife's bottle, I spoke with my Dr. about the possibility of getting a prescription for myself. I get 45 tablets at a time. Because Tylenol 3 with Codeine is addictive, I will only take it when my flare ups get REALLY bad. When it's really bad, I'll take 2 and that will usually get me through it. If not, I will take 1 or 2 more until things subsides.

    I do get refills about every 6 or 7 weeks. It's been a good backup for myself.

    As for AZO, I have found that it usually makes things worse for me.

    Good luck everyone

    Leave a comment:

  • jen74
    ICN Member

  • jen74
    replied
    Re: Dr's who refuse to prescribe medication?

    Wow, I am so sorry you went through all that! That is just awful. I know when I first got IC I drank a big jar of pure cranberry juice thinking I had a UTI. OMG, all I can say is that I was in agony, pure agony. If felt like someone took a torch and stuck it up my bladder!!! I am so happy the ER gave you some pain meds. Usually they wont! They do not believe that IC required pain meds. How frickin stupid is that???? I still remember a urogyne( she was a lady too) tell me that she NEVER gives pain meds out for IC, ever. She said it was a rule of hers. She told me all people who have IC that take pain meds will eventually become drug addicts and end up rehab! I never went back to see her, what an idiot she was.

    I am just glad that the ER did help you. I do not understand most doctors. I myself am so sensitive to pain meds and all meds for that matter so I usually cannot take them. I have found my regular primary care doctor helps me more than a any urologist ever has. She gave me a script for some percocets ( like 30 pills) to take if I get desperate enough. She also gave me a script for tramadol which did help me years back, but it messed up my gut sooo bad I could not take it. That is an option you can ask your uro about. My doctor said with tramadol, you have to take it consistently and it will work very well for pain. I wish I did not have a reaction to it . Maybe your uro would prescribe it for you. It is not like a narcotic where it is so restricted. If your uro will not prescribe it, I would find yourself a good primary care doctor who is willing to listen to you. I find they are usually more willing to help with the pain issues than a urologist or specialist will....




    Originally posted by Bladderella View Post
    A little over a week ago, I was in such mind-numbing, excruciating pain that my whole body was in a tremor. My lips and teeth were chattering and I couldn't even walk or stand. All I could do was scream in agony and pray for mercy. I truly believe it was the spinach, celery and Green Superfood in my green smoothie that caused it. This was a shock to me as it was all healthy stuff in the drink. From everything I'd seen on the internet, this was supposed to be a drink that did me good. WRONG!! It was like a triple whammy to my bladder. This was no flare. It was a full-fledged inferno. I was in so much pain that I was almost delirious. My husband called an ambulance and they took me to the hospital where they gave me fentanyl in an IV. After about 4 hours, my pain level had dropped from an eleven to a 4 and I was released to go home. My urologist had the ER physician prescribe me pain medication-- Pyridium (15 tablets) and Norco (10 tablets). I ended up having to take the pain meds for a few days longer as I could feel the pain rearing its ugly head and I certainly did NOT want a repeat of that horrid Sunday. I was running out of pain meds.

    By the middle of the week, I began thinking ahead. What if something I ate caused me that kind of pain again? What if it happened over the weekend like it did before? I can't take ibuprofren... it causes a flare. Ice, heat and Epsom salt baths didn't help for that kind of pain. I'd already tried that. So, if this happens again, what am I supposed to do... call another ambulance? So, I called my urologist and explained to the nurse that I was almost out of pain meds and scared spitless of the spot I'd be in if I had a reoccurance. I assured her that I would not abuse the meds and not take them for any little thing. I will only use them in case of a similar episode. The urologist apparently agreed because he called in another prescription but this time only for the Norco (10 pills), and not the Pyridium. I have them here at home on standby and will not take them unless I absolutely have to. Mind you, I've only seen this urologist once in person so I feel very fortunate that he listened to me. I feel better knowing I won't have to suffer like I did last weekend if it should happen again.

    Leave a comment:

  • Bladderella
    ICN Member

  • Bladderella
    replied
    Re: Dr's who refuse to prescribe medication?

    A little over a week ago, I was in such mind-numbing, excruciating pain that my whole body was in a tremor. My lips and teeth were chattering and I couldn't even walk or stand. All I could do was scream in agony and pray for mercy. I truly believe it was the spinach, celery and Green Superfood in my green smoothie that caused it. This was a shock to me as it was all healthy stuff in the drink. From everything I'd seen on the internet, this was supposed to be a drink that did me good. WRONG!! It was like a triple whammy to my bladder. This was no flare. It was a full-fledged inferno. I was in so much pain that I was almost delirious. My husband called an ambulance and they took me to the hospital where they gave me fentanyl in an IV. After about 4 hours, my pain level had dropped from an eleven to a 4 and I was released to go home. My urologist had the ER physician prescribe me pain medication-- Pyridium (15 tablets) and Norco (10 tablets). I ended up having to take the pain meds for a few days longer as I could feel the pain rearing its ugly head and I certainly did NOT want a repeat of that horrid Sunday. I was running out of pain meds.

    By the middle of the week, I began thinking ahead. What if something I ate caused me that kind of pain again? What if it happened over the weekend like it did before? I can't take ibuprofren... it causes a flare. Ice, heat and Epsom salt baths didn't help for that kind of pain. I'd already tried that. So, if this happens again, what am I supposed to do... call another ambulance? So, I called my urologist and explained to the nurse that I was almost out of pain meds and scared spitless of the spot I'd be in if I had a reoccurance. I assured her that I would not abuse the meds and not take them for any little thing. I will only use them in case of a similar episode. The urologist apparently agreed because he called in another prescription but this time only for the Norco (10 pills), and not the Pyridium. I have them here at home on standby and will not take them unless I absolutely have to. Mind you, I've only seen this urologist once in person so I feel very fortunate that he listened to me. I feel better knowing I won't have to suffer like I did last weekend if it should happen again.

    Leave a comment:

  • Pee-Tee
    ICN Member

  • Pee-Tee
    replied
    Re: Dr's who refuse to prescribe medication?

    I am finding it a bit difficult to reconcile the point of caring with refusal to prescribe pain meds, I take pain meds everyday to function, problem for me right now is what to give me when flaring, my uro suggested bladder removal like Donna said they fear for their licences not that all options have been EXHAUSTED and without any doubt bladder removal is not an option for me and because I said so my gp does not want to see me anymore, I live 500km away from my uro and he is mostly in the states that's where his family is, he is old, experienced, wants to retire but worries about patients like me imagine and he comes back to Zimbabwe,because there is noone else like him,

    Leave a comment:

  • arkitekton
    ICN Member

  • arkitekton
    replied
    Re: Dr's who refuse to prescribe medication?

    "I just started going to a new pain management doctor and he took me off of pain meds because pain meds are not for IC on an continuous basis."

    Your doctor is wrong. Some IC sufferers only get meaningful pain relief by taking pain meds on a continuous basis.

    Leave a comment:

  • ICNDonna
    ICN Staff

  • ICNDonna
    replied
    Physicians are granted privileges based on their education and specialties --- if a physician prescribes what their licensing agency considers "too many" pain medications --- or does procedures for which he/she does not have privileges --- the physician can be reprimanded, and can even lose the license to practice medicine.

    Most doctors don't make referrals or refuse to prescribe pain medications because they don't care --- they do it because they do care --- and they want their patients to have the best care possible --- and they want to keep helping people.

    Donna

    Leave a comment:

  • nineteenwinters
    No longer active

  • nineteenwinters
    replied
    My first Uro was like that. He also wanted to do my cystoscopy with full bladder test with a numbing agent only. I went out and found another who I am with today. For me its odd. While I have very little pain and horrid frequency taking pain medication helps control the frequency. But if you feel you need pain meds I would suggest trying another Uro. You should have the right to pain meds if you need them. I am on Nucynta which has a lesser chance of addiction as it doesn't go to the brain like Vicodin does. Perhaps you could mention to them you'd like to try it for a week and see how it goes? If it were me and my Uro said no without any explanation of why not I would hunt for a new Uro.

    Leave a comment:

  • crkshnks79
    ICN Member

  • crkshnks79
    replied
    Jen is absolutely right about different patients , different regimens . Like she said , you need a doc that will work with you to figure out works whatever it maybe and the only way to find out is to find a doc who is willing to explore all the possibilities . I found a new primary doctor after I won my disability case ( based on just my IC) because my old one was useless , they ALWAYS wanted me to go to a specialist for even the simplest of things . Once I found a new primary I approached her on the first visit about her handling my pain until I could find adequate pain management , and she was ok w it ( which is rare on a first visit , I really think the fact that I was disabled from this disease went a long way w her ) anyway she was willing at first to help me w low doses and what I would call " spot control" having a few pain meds to get me through the worst of what I could not handle , which sounds like thats what you need . I eventually had to go to see a pain m because she felt uncomfortable about giving me anything higher then 5mg percocet and only 20 a month , my flares usually outlast that by days and sometimes weeks . Anyway , moral of the story lol , sorry I babble ! Maybe your primary could handle the pain once in awhile ? and I cant remember if you said your uro or primary referred you ? but if it wasnt the primary , give them a whirl and see what they say , at the very least they should help find you someone who can treat you . I understand what you mean by picking yourself back up , dont give up , I found myself feeling the very same way so often . Like I guess this is my life and its as good as its going to get ( I still feel that way sometimes ) BUT I found it helped me to get angry on the inside ! dont go to an office and be angry , that wont work , just keep it to stoke your inner determination to get you through . And trust yourself and your body , do not let a doctor or family or friends tell you that its not that bad , or you being too dramatic . YOU know your body more then even the best doctor , keep that in mind . Also a bit of advice doctors seem more willing to compromise if you are open to different treatments , if you say that you dont want to try anything but yet want meds , they most likely wont help you . I have had some pretty hardcore treatments , but at that point I was in such constant severe pain that I was willing to try ANYTHING to see if it helped and yes some of the more scarier treatments did help like pudenal nerve blocks which is NOT an IC treatment but consisted of 3 vaginal needles , 3 times a week . They helped give me some of my life back even though they made me scream while I was getting them . You shouldnt have to do anything you dont want too , just try to stay open minded and compromise and the doctors usually are more helpful that way . I am sorry you have to go through this frustration , it can be overwhelming but it is possible to get through . (((hugs)))

    Leave a comment:

  • JenAZ07
    ICN Member

  • JenAZ07
    replied
    Just a hint....I would try to find a pain management dr who is not also an anesthesiologist. In my experience, I have found that anesthesiologists are more eager to try a procedure (nerve block, ablation, etc.), than rx meds. They may a lot more money from procedures than they make off monthly visits to write scripts.

    Not all ICers respond to the same meds and same course of treatment. Some respond very well to narcotics, some do not. Finding a treatment plan that works for you, your body, and your lifestyle takes time and patience. You need to find a dr who will let you explore options to find a treatment plant that works for you....whether that be meds, injections and/or blocks.

    Leave a comment:

  • AlaskaGirl
    ICN Member

  • AlaskaGirl
    replied
    I definatly had the same problem before i was diagnosed the doctors wouldnt give me anything so once i was diagnosed i went back to my same doctors and they were ok with giving me pain meds but unfortunitly the non narcotic pain pill tramadol wasnt strong enough so im having to take two at a time which they make stronger ones but how do you go at a doctor with your information that a pain pill isnt strong enough there just gonna look at you like your an addict im in the beginning stages of knowing i have this disease and i am in pain everyday i wake up three times a night to go to the bathroom the longer i wait to go the more i hurt i take peridium on a regular basis which i was told after long time use can cause damage but if i dont take it i am going to the bathroom without urinating my bladder is not comfortable in any way without having pain medication and peridium

    Leave a comment:

  • Star B.
    ICN Member

  • Star B.
    replied
    Thanks crkshnks79. That's exactly how I've been looking at it. And the thing is, I don't even need constant pain relief. I can handle a certain amount of pain and discomfort, but then there are the really bad days that are hard to get through. Thanks for the suggestion on calling the pain clinics. I'm still working myself up to try again. The last visit kind of took it out of me.

    Leave a comment:

  • crkshnks79
    ICN Member

  • crkshnks79
    replied
    Hi , I know how confusing this all is ! Alot of us have been in the same exact position as you and just as confused ! It took me years to just get diagnosed and so I automatically assumed that considering IM in severe pain that narcotics would be the next logical step BUT unfortunately not all doctors think this way . If a doctor tells you that IC is not treated w narcotic pain meds continuous or otherwise , then they typically do not have a good understanding of IC . I have seen some of the most recommended IC docs( on here and otherwise ) and they all agree that narcotics are a definite usable line of defense in patients . Now they are different types of pain management , and as stupid as it seems some do not prescribe pain meds ( which boggles my mind ) The most frustrating thing is all the time you waste making an appt and hoping this next one will help me , I just have to get to the next appt , the next doctor and then they wind up being harmful ( by upsetting you ) or useless to listen or help . It is frowned upon to ask on the phone whether this doctor prescribes pain medication , the best way to find out is too ask referring doctors specifically , does this office provide pain medications for patients who warrant them ? ( you could technically give it a shot when calling a pain m. office, if you word it that way , I have found some success in phone convo's when asked " if found warranted " I guess it gives them a sense of security in case they choose not to treat ? who knows ? sometimes I think the medical community is whacky as hell ! ) I know it is so very hard to hang in , I take continuous as well as break through pain meds and still I have days where the pain is just not tolerable , althougth I have a heck of a lot more functional days now then I ever did when I didnt take pain meds ! See if you can have whatever doctor referred you to write you out a recommendation to take w you as too why they think you need them . Be very specific yourself , explain how the pain interferes w your quality of life and specifically what activities . Tell them you just want some sembalance of your life back . I wish you the best of luck , if you have any questions please feel free to ask me through this post or PM me .
    ((( hugs)))

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  • dyno
    Support Leader

  • dyno
    replied
    I would also suggest talking to another pain Dr. about it. You will feel better having another opinion.

    Leave a comment:

  • earthlady
    ICN Member

  • earthlady
    replied
    My dr. prescribes pain meds but monitors the usage. I think they would rather try other medications first like Neurontin or Elavil etc. to see if this reduces the pain so that narcotics aren't needed. There seems to be different kinds of pain specialists, and some would much rather do a procedure that may help the pain in lieu of medication. What do you do in the meantime though for pain-right? I sometimes wonder if any of them have ever been in extreme pain themselves and have any idea what it feels like. A second opinion might be a good idea if it's possible.

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