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  • Uro "doesn't believe" in Pain Meds for IC

    Ok so I was diagnosed with IC about a month ago. Since being diagnosed by PST I have been receiving in office bladder instillations every other day. I have been in a near-constant horrible flare since the PST. Well after being diagnosed I found this forum, and started to notice that I was seemingly the only one not being treated with any form of pain med other than the instills (which as of now seem more hurt than help with the in-out of the catheter all the time). Last week (or week before can't remember) I went into the support chat and asked the admin about pain meds and she said I should ask, while another regular user insisted I find a new Uro. Wanting to give him the benefit of a doubt at my next instill after that chat I asked if there was something they could prescribe me for the pain. I was told that my urologist "doesn't believe in treating IC with pain medications". I was kind of dumbfounded. I am having trouble even getting out of the bed I'm in so much pain a lot of days. Have any of you heard of this?! Should I find a new Uro?! I really wouldn't mind finding a new one as I'm not attached at all to mine as I've been seeing him only about 2 months. However, I am so so so scared that if I go to a new uro they'll make me take that dreadful PST again, and I just can't can't can't will not take it again. Any and all advice would be so much appreciated!!!

  • #2
    Your next option would be to ask him if he will give you a referral to a pain management clinic and they can help you with the pain. Some uros don't want the responsibility, other's simply don't believe we have pain with IC. Crazy, I know but you are not the only one that has had this problem. Thankfully the new guidelines for diagnosing and treating IC specifically state that pain should be evaluated at all levels of treatment and degree of severity of your IC.

    You might just have to find another IC specialist. Lucky for you that you are in a large metropolitan area, many that live in remote areas are stuck with what they have. I know that there was a reccomended Dr in Atlanta on the list on the home page of this site. You might want to look there and see what you find.

    Good luck, don't accept that you can't get treatment that you deserve. Most of us have to kiss a few frogs before we find our prince or princess of a Dr!!LOL

    Sandra
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

    Comment


    • #3
      See if you can get some recommendations for doctors in your area. If this person does not believe in pain meds, please, please go to someone else. I'd like to give my honest opinion of this doctor but my words aren't appropriate for this forum.

      Ask for copies of your records so you don't need to have the PST again.

      Comment


      • #4
        I agree that if your doctor doesn't order pain meds for IC patients, a referral to a pain management specialist is a good step to take. I suggest you see a different doctor for a second opinion --- that doesn't necessarily mean you have to change doctors, but it would at least give you an opportunity to discuss other treatment options.

        You shouldn't have to repeat tests --- if you change doctors, your new doctor can get a report of tests and treatment results.

        Warm hugs,
        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

        Comment


        • #5
          Dont blame the URO; a lot of uro's wont rx pain meds due to all the possible issues that could arise. Instead they tend to recommend pain management Dr's to their patients. If you feel you need something stronger than an OTC med by all means ask your URO for a referral to a pain management specialist.
          (\__/)
          (o.O )
          (> < ) This is Bunny. He's on his way to world domination.

          Comment


          • #6
            My uro won't write for pain meds either, and I have checked with 2 others and that is apparently the norm. I think I need to get in with a pain management clinic, because the tramadol isn't really helping much. I am sitting here with this catheter, wondering why they won't help me, when the pain is obvious to everyone around me.

            Comment


            • #7
              Unfortunately, physicians have to follow very strict guidelines regarding prescribing narcotics. If they prescribe what is considered "too much or too many" they can be putting their licenses at risk. That's one primary reason most will refer their patients to pain management specialists if they need full time pain control.

              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

              Comment


              • #8
                Originally posted by sailawaygrl View Post
                Your next option would be to ask him if he will give you a referral to a pain management clinic and they can help you with the pain. Some uros don't want the responsibility, other's simply don't believe we have pain with IC. Crazy, I know but you are not the only one that has had this problem. Thankfully the new guidelines for diagnosing and treating IC specifically state that pain should be evaluated at all levels of treatment and degree of severity of your IC.

                You might just have to find another IC specialist. Lucky for you that you are in a large metropolitan area, many that live in remote areas are stuck with what they have. I know that there was a reccomended Dr in Atlanta on the list on the home page of this site. You might want to look there and see what you find.

                Good luck, don't accept that you can't get treatment that you deserve. Most of us have to kiss a few frogs before we find our prince or princess of a Dr!!LOL

                Sandra
                I don't think he will refer me to a pain management specialist because he used to prescribe pain meds but now won't because he thinks instills are the only pain management IC patients need (even me who he claims has "severe IC"), but I am going to give it a shot & ask when I go in this afternoon for treatment. The weird thing is that my Uro is listed as a doctor in Atlanta on the homepage (Dr.Proctor), and he specializes in IC so I really don't know what's going on with this no pain management non-sense!!!

                Comment


                • #9
                  Originally posted by krs72 View Post
                  See if you can get some recommendations for doctors in your area. If this person does not believe in pain meds, please, please go to someone else. I'd like to give my honest opinion of this doctor but my words aren't appropriate for this forum.

                  Ask for copies of your records so you don't need to have the PST again.
                  I thought I was going crazy for being so upset about this so I appreciate the support. My husband had a few choice words as well you can imagine. Do you know if they'll charge me for the copies of my records? I just want to be prepared before I go.

                  Comment


                  • #10
                    I think you absolutely need to get as much information in hand about the treatment protocols for IC and take them to your doctor to discuss, in his office, not half nude on the table. This doctor of yours is putting you at risk of severe depression, poor quality of life, and possibly even suicide.

                    If you just ask around this site, you will hear a lot of us talk about how the thought of ending our lives would be better.

                    I was lucky in that my uro and urogyn were prescribing small amounts of pain meds, but that was only after we pretty much tried every other TCA, anti-seizure, bladder instills, OAB meds, SSRIs, SNRIs, anti-depressants, heat/cold therapy, acupuncture, etc. to no avail.

                    By the time they both referred me to pain mgt. my neurologist was so angry that they didn't give me adequate pain control, stating that I wouldn't be in such a state of mind if I had been "helped" all along to get through, and if my whole life as I knew it before hadn't been turned upside down. Basically living as an invalid when nobody can even see from the outside that you have a problem just makes people (including doctors) put you down as a "crazy".

                    My PM doctor said those two doctors delaying so long to give me adequate pain relief, that my pain might actually be central sensitization. I don't have time to write all about that, but if you google it, you'll see it's effectively like phantom pain.

                    I'm sorry you are going through this. I wouldn't wish this disease on anyone, but some people need a dose of reality. Only YOU know what your body is going through. Only YOU know how much pain you are in. And only YOU know whether or not it is tolerable or not.

                    Sonja

                    Dx: Idiopathic Dilated Cardiomyopathy/Congestive Heart Failure-1997, Vulvar Vestibulitis-2006, IC-Feb 2007, Atrophic Vaginitis 08, Heavy Long and Painful Periods leading to Partial Hysterectomy-2007, Rectal Fissure-2007, Pelvic Floor Dysfuntion-2008, Post-Menopausal-2010

                    Meds: Coreg, Elmiron, Elestrin, Est/Test Topical Gel, Valium Suppositories, Lyrica, Dyrenium to counteract edema from Lyrica, Pain Meds.

                    IC Diet: Very diet sensitive, esp. to spices.

                    Comment


                    • #11
                      i havent looked at the ga page recently on the recommended doctors on icn but i believe there are several "ic specialists" in atlanta affiliated with emory or some of the bigger hospitals maybe? look into pain management. it was the best decision i ever made.
                      Newly IC diagnosed as of February 2011.

                      Medications I'm on that seem to work:
                      Zoloft- one once a day
                      Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                      Failed Meds:
                      Elmiron-after 4 months,digestive side effects got to be too much
                      tramadol-allergic
                      DMSO treatments(5-6)
                      probiotics

                      THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                      AROMATHERAPY-candles,incense
                      Village Naturals Aches and Pains Peppermint Bath Salts
                      Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                      ACUPUNCTURE/HERBS
                      Significant pain relief so far.

                      MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                      ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                      Add me on facebook Angela Hasic

                      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                      Lord, make me an instrument of your peace;
                      where there is hatred, let me sow love;
                      when there is injury, pardon;
                      where there is doubt, faith;
                      where there is despair, hope;
                      where there is darkness, light;
                      and where there is sadness, joy.
                      Grant that I may not so much seek
                      to be consoled as to console;
                      to be understood, as to understand,
                      to be loved as to love;
                      for it is in giving that we receive,
                      it is in pardoning that we are pardoned,
                      and it is in dying [to ourselves] that we are born to eternal life.

                      Comment


                      • #12
                        I unfortunately but Fortunately have ankylosing spondylitis which my rheumatologist prescribes me pain meds so that's not a problem but I don't think it helps with my bladder pain. I'm going on two full weeks of major bladder pain. I guess some people call it frequency or urgency. Not sure what the difference is. I also have vestibulitis and not sure which pain it's coming from. I am a big fan of AZO but really wishing my apt would get here soon. I'm sooo uncomfortable and the Lortab is NOT helping.

                        Comment


                        • #13
                          I live in Woodstock. I sent you a PM. May be able to help you find another doc.

                          Comment


                          • #14
                            My first uro gave me tramadol only and that was like taking an aspirin for the pain I was experiencing. I could not even talk, walk, eat or sleep just barely getting by. I think I was in such a bad IC flare it was compared to cancer.
                            I lost tons of weight extremely weak and 7/24 misery. This was three months of horror. I came so close to eating a bullet, I was not able to even use the computer. When I seen my second Uro he described me as a train wreck thats how bad I was. Thank-god he got me on the correct trestment and I was 95% good in six weeks. I am doing fine now, except for the numerous surgerys I've got to have and the depression as well. I stick pretty much with my IC diet for fear of flaring.
                            I hope you can find a much more understanding Uro who can help you, and not the monster uro I first had.
                            <center>
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                            • #15
                              My Uro believes that I do have pain, but he didn't want the responsiblility of giving me pain meds so he sent me to a pain doctor - who at first wanted to do all sorts of injections on me-which is ok I guess but I am on Coumadin which is a blood thinner for my heart valve and if I get off of it than I have to be on another med and he said I couldn't so his answer to that was to put me with a PA who just give me pain meds and increase the dosage and amount every so often. I finally switch PM doctors recently due to my back and he suggested injections but said it was up to me due to my health risk.
                              He did take me off my hydrocodone(?) which at first I wasn't sure was a good thing, and put me on cymbalta and also again on Neuronton. At this time I am taking 900 mg of neuronton and suppose to take 60 mgs of cymbalta but I worry that a lot of doctors don't take in consideration the patients weight so I am for now just taking 30mg of this meds. So fair it has been working haven't had too much pain and I am starting to sleep in again.

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