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  • Help!doc Wont Give Pain Meds

    I have been to my urologist and started new doc ,,, no one will give me any pain meds ,, I have tried the ultram and all the non narcotic solutions ,, for the mild pain it is fine . When I hurt so bad i cant move or walk ,,, or work for that matter which i dont do much any more. My doc says that pain meds are not good for the ic that the narcotics make the ic symptoms worse and flare.... I just dont get it , you get told you have a chronic painful desease and yet know one will give you meds. People wonder why we have to go to the internet to get pain meds ,,, i havent done that yet but man I would love too.. I know they have buckled down on ppl getting meds that way ,,, but tell me WHAT!are we suppose to do , i cant handle the pain everyday and never get relief for it... If it wasnt for some friends and family who have pain meds i would never get relief. I did however start on a hormone and elivil and the pain is somewhat better so maybe there is hope with that med... i also take some muscle relaxers (skelaxton)but not all the time .... I have the interstim too and i hate it and wish i wouldnt have lost my insurance so i could get it removed.... Thanks for listening hope someone has some advice for me...

    continuley in pain. christy

  • #2
    I'm sorry that you're having pain problems. I think most of us on this board have been where you are at one point or another. I know that I have! A lot of uro's won't RX pain meds because they don't really understand them, and they don't like to get caught up in the rules and regulations set up by the Gov't for controlled substances.

    I'd call around and see if you can find a pain mgmt clinic that actually does RX pain meds. You have to ASK, even if you are calling a pain mgmt clinic because even some of them refuse to order narcotic pain meds. They do things like nerve blocks, etc. I ran into a couple of places like that. Finally, after searching around and a visit with an anesthesiologist who was a kind man, I got the name of my current pain doctor. He's helped me very much and I don't know where I'd be right now if it weren't for him.

    I want to you to the board, and if you haven't checked out the patient handbook link at the top of the page you might want to. It has the answers to just about any IC question you can think of. Also, if you aren't on the IC Diet, you might want to give that a try. Lots of people here manage their pain simply by watching their diet.

    I hope you find some help soon.

    Sandy
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

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    • #3
      to the ICN!! I see that Sandy has already given you some great advice. Most of us who are on long term pain mgmt go to Pain Clinics. The only thing I would add to what Sandy said is to tell you that you might want to consider getting a new uro or primary care Dr also, b/c most pain clinics require a referral. If your Dr. truly believes that pain meds are bad for IC, then it seems unlikely that he/she will refer you. But, if your Uro wont refer you, your Primary Care Dr might. It is definately worth asking! I hope you get the help you need very soon. Hugs, Amy

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      • #4
        Cristy,
        Both women are correct. You need to see a Pain Management Specialist if you need pain medication. Urologists will not give pain meds.

        Ginny

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        • #5
          Ditto here to what the distinguished ladies already said. Hang in there.

          Hugs,
          Barb
          (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

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          • #6
            Originally posted by Ginny View Post
            Cristy,
            Both women are correct. You need to see a Pain Management Specialist if you need pain medication. Urologists will not give pain meds.

            Ginny
            My urologist actually offered to write me a script for pain meds. I declined the offer, but at least I know that if I get to the point of needing them, I won't have to search for someone who will help me.

            Comment


            • #7
              Words of advice....ask your uro or PCP for a pain specialist who deals with IC or has experience with IC patients. I have a pain specialist (actually I am forced to his Physician's asst now) and he knows literally nothing about IC.....and because of this, he has no idea what kind of pain we experience. Don't be afraid to call around and ask the pain specialists if they treat IC. I was fortunate enough to find one and I am switching pain specialists as of the 11th of next month. So excited!!

              Before I got in with a pain specialist, I would go to the ER when it got really bad. Hope you get some pain relief soon.

              Comment


              • #8
                sorry you have to deal with a doc who won't subscribe pain meds.. I agree.. we have a chronic painful disease, yet they so no to pain meds.. huh,. I don't get it

                anyway, I am lucky enough that my uro's always prescribed pain meds for me.. without a problem.. even more lucky, because for over 14 years with this thing, I can't seem to find one pain clinic in my state that deals with or even knows about IC `

                good luck to you ~~~hugs~~~
                Healing thoughts

                Bea

                Comment


                • #9
                  Through the 20 years of dealing with IC, I have been to a regular uro, a pelvic pain specialist and now a uro/gyno. I have never had a problem with getting pain meds when I needed them. I know I am very lucky in reading so many other posts. Even when my symptoms first started I mainly had freq/urg issues with some pain and my doctor was very sensitive to all my symptoms.

                  What part of TN do you live in? You can pm me if you want. I know of a few doctors around the major cities that are great with IC patients. Especially if you are around the Knoxville area!

                  Hugs, T83

                  Comment


                  • #10
                    I do agree that seeing a pain management specialist may be the best route for you to take. What kinds of treatments have you tried?

                    Donna
                    Stay safe


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                    • #11
                      I Feel Your Pain!

                      I just got back from a visit with my GYN for some other things, but since they had diagnosed me, I asked today about getting my pain pills refilled, with something, ANYTHING. My doc had first put me on Motrin 800's (of course that was NOT a wise choice), and then put me on Toradol. When I asked, the woman (an NP fill-in for my normal doc who's out of office) looked at me like I was crazy, and said since it's a narcotic, I can't get it refilled. I wanted to shake her and say HELLO?! I'm in PAIN here! WHAT am I Supposed to do?? I explained that my pain is pretty unbearable most of the time, particularly at work, and often I need something to help me out so I can make it through my day. She suggested Aleve... but if that helped so much, wouldn't we all be taking it and wouldn't need stronger things? It just makes no sense. I totally feel your pain--no pun intended! But it makes me mad, I cried all the way home, it feels so hopeless sometimes, like no one's listening to me. I'm not some weird druggie kid who's making this stuff up...it's serious, it's terrible, and it feels like they just don't care.
                      "Your pain is a gift.
                      What doesn't kill you makes you stronger,
                      allowing us to learn from our mistakes."

                      ~Brent Smith, Shinedown



                      Diagnosed in January 2008 with IC
                      Anxiety, depression, migraines
                      Current Treatments: IC Diet

                      Comment


                      • #12
                        I think we have all been in (or are in) this situation. I absolutely hate it! The doctors say that they don't want us to get addicted to the pain meds but that we should just deal with the pain. Drink pear juice or take a bath. When does pear juice get rid of pain especially when it's a bad flare?! And you can't exactly take a bath at work now can you?

                        It's absolutely horrible that we have to feel like druggies just to get the medicine we need. My previous GYN (before I was dx with IC) said "there's nothing wrong with you, if you're in that much pain go to the ER" when I told her that I had and they told me to see my Dr. she got an attitude and said "then I can't help you" I was so mad. I felt like I was crazy and asking myself if it really was just in my head. We can't let (some) doctors get to us. If you have to go to 50 different doctors until you find one that can sympathize with you and give you what you need, do it. I hope you can find someone soon!!

                        Comment


                        • #13
                          Originally posted by tlksalot7 View Post
                          ...My doc says that pain meds are not good for the ic that the narcotics make the ic symptoms worse and flare....
                          That's nothing less than a big fat lie! Narcotics are the only thing keeping me alive right now...

                          While Mild IC'ers may not need narcotics, there are some of us with Severe IC who most definitely do! I went to see a Pain Specialist who also said that "IC should not be treated with narcotics"! I wish I knew what "authority figure" decided that IC should not be treated with pain meds.

                          Not all IC'ers can be judged with the same jury...

                          I am so sorry you are having problems. I am very lucky so far, in that my urologist is helping me with my pain meds. But, he is not that comfortable doing so and we are looking for someone who will oversee them for me. But, he is very willing to work closely with them and explain to them "why" I need radical pain intervention.

                          I wish I could help you my dear! Just go in armed with as much information as you can get and do everything you can to compel your docs that you are in serious pain and need 24/7 relief ASAP!

                          Let us know how it goes...
                          ~Beth
                          I am not a physician, so please do not mistake any of my comments as medical advice. I am just a fellow sufferer sharing my experience with IC.

                          Scheduled for Radical Cystectomy & Indiana Pouch, July 16, 2009

                          Hit with severe pelvic pain on 6/14/08 (7:05pm): GYN, MRI, CT, laparoscopy, colonoscopy: All Clear
                          DX'ed with Severe IC: Findings during cystoscopy and hydro-distention on 9/11/08 showed: scattered areas of hemorrhage and glomerulizations, w/bloody efflux. Update: Had second cysto/hydro on 5/21/09: My uro said "there were thousands of lesions" all over my bladder.
                          Current Meds: Bladder Instills (self-adm 3 x per week or PRN); MS Contin; Lortab (PRN); Zanaflex; Maxide; Estradiol Patch
                          Other helpful remedies: IC Diet (very important!) especially no chemical additives or preservatives; Drink 1.5+ gal. of pH neutral water per day (I test my water frequently! This is very, very important!!); Prelief; Heating pad; and lots of hugs from my wonderful hubby!
                          Meds I have tried, but could not take: Amitriptyline & Imipramine (both made me mentally nutzoid, gave me nightmares, and neither one touched the pain); Lyrica (didn't touch the pain either, plus it made me very nauseous after eating and then it triggered my IBS); Cymbalta (didn't touch the pain either and it made me horribly depressed--all I did was sleep and cry!); Percocet (did very little for the pain and gave me headaches); Discontinued using Sodium Bicarb & Kenalog in my instills (it burned really bad!).
                          Discontinued Meds: Elmiron (replaced by Heparin in instills); Bentyl (antispasmodic and anticholinergic; Zanaflex works much better for me!); Valium Suppositories
                          History: IBS (spastic colon) since 1982; Partial hysterectomy 1985--completed in 2002 with extensive adhesion removal (I think this surgery was my IC trigger!); Non-painful urinary frequency since 2002; No history of frequent UTI's; HPV and abnormal paps 1/07; Sporadic PFD

                          Comment


                          • #14
                            oops!

                            I see now that this is very old thread....

                            I am not a physician, so please do not mistake any of my comments as medical advice. I am just a fellow sufferer sharing my experience with IC.

                            Scheduled for Radical Cystectomy & Indiana Pouch, July 16, 2009

                            Hit with severe pelvic pain on 6/14/08 (7:05pm): GYN, MRI, CT, laparoscopy, colonoscopy: All Clear
                            DX'ed with Severe IC: Findings during cystoscopy and hydro-distention on 9/11/08 showed: scattered areas of hemorrhage and glomerulizations, w/bloody efflux. Update: Had second cysto/hydro on 5/21/09: My uro said "there were thousands of lesions" all over my bladder.
                            Current Meds: Bladder Instills (self-adm 3 x per week or PRN); MS Contin; Lortab (PRN); Zanaflex; Maxide; Estradiol Patch
                            Other helpful remedies: IC Diet (very important!) especially no chemical additives or preservatives; Drink 1.5+ gal. of pH neutral water per day (I test my water frequently! This is very, very important!!); Prelief; Heating pad; and lots of hugs from my wonderful hubby!
                            Meds I have tried, but could not take: Amitriptyline & Imipramine (both made me mentally nutzoid, gave me nightmares, and neither one touched the pain); Lyrica (didn't touch the pain either, plus it made me very nauseous after eating and then it triggered my IBS); Cymbalta (didn't touch the pain either and it made me horribly depressed--all I did was sleep and cry!); Percocet (did very little for the pain and gave me headaches); Discontinued using Sodium Bicarb & Kenalog in my instills (it burned really bad!).
                            Discontinued Meds: Elmiron (replaced by Heparin in instills); Bentyl (antispasmodic and anticholinergic; Zanaflex works much better for me!); Valium Suppositories
                            History: IBS (spastic colon) since 1982; Partial hysterectomy 1985--completed in 2002 with extensive adhesion removal (I think this surgery was my IC trigger!); Non-painful urinary frequency since 2002; No history of frequent UTI's; HPV and abnormal paps 1/07; Sporadic PFD

                            Comment


                            • #15
                              I am so frustrated this happens to people with ic, I know from research not all states have pain laws, but they should. also not all people can afford or their insurance does not cover pain managment clinics. this has to stop.
                              I was in your position when I was first diagnosed, and I am in it again because of a doc who is a not nice word. I hope you find help, maybe with your primary care giver, or internal med doctor
                              Lots of things to think about
                              Nothing to worry about
                              http://www.thoughts.com/hipmama

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