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No success with pain clinic. Im so mad and confused. I could just cry.

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  • #16
    Heres the kicker Jen,

    He is a pain doctor but he said he will not prescible pain meds for IC paitients even though he knows its a painful disease....Yes I am going to see if my GYN can get me another referral with some else...My Uro is nuts to.. He didnt even know what a recue instill was...lol
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Comment


    • #17
      Did you get or buy the ICN Special Report on Pain? I bought the email version and printed it out for my gp, it is very helpful to have in hand. Thanks Jill. Awesome and is a good resource for doctors I believe. Ronda, you may want to print one for your next drs appt. Good Luck today at the Gyn.

      Comment


      • #18
        Ronda,

        Sorry to hear all of this. I am finally out of my hole I was hiding in and back in the world. I have a good friend going through approval for the neurostimulator - let me know if you would like to talk to her and I will give you her email address. Her symptoms seem similar to yours.

        As always you are in my prayers. I know I haven't been around much but I know you understand.

        Lots of love,
        April

        Comment


        • #19
          Originally posted by aprilmae View Post
          Ronda,

          Sorry to hear all of this. I am finally out of my hole I was hiding in and back in the world. I have a good friend going through approval for the neurostimulator - let me know if you would like to talk to her and I will give you her email address. Her symptoms seem similar to yours.

          As always you are in my prayers. I know I haven't been around much but I know you understand.

          Lots of love,
          April
          Oh Ronda I'm so sorry. When are you going up on the Topamax? You're only at 25mg still? That just won't do it. I started out at 50mg and never was at 25mg. I'm so sorry you are so miserable. I have to run to the pharmacy. I'm going on day five without my Topamax now because I couldn't get to the store, and I'm feeling it really bad. I hope it doesn't put a kink in the relief. I'll be very angry with myself. I'm having horrid anxiety and starting another flare and when I read you being so upset....oh, my whole pelvis just gets in an uproar.

          HUGS from me to you,
          Moonheart
          http://www.TheCraftyEwe.etsy.com

          Comment


          • #20
            Update

            Well went to GYN today and going up on Topamax which is a good thing.. I told her all about what my URO did and the pain Doctor and her mouth dropped..So she said she usually does not do reffer her patients to other drs when they already have one but she knows what I am going through and knows I am not getting the right treatment or care I deserve.. So she referred me to another URO who happens to be a woman and specializes in IC.. That I am greatful for that..She also said she was going to call her and give her the run down on my history.. So I thought that was nice..So Thats where I stand now..I will keep you updated on how the 50mg of Topomax does

            Thanks again for all of your support
            Ronda
            Hugs
            Ronda

            ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


            Link to Patient Handbook:
            http://www.ic-network.com/handbook/

            Diet Reference Sheet:
            http://www.ic-network.com/diet/icndi...tsheet0909.pdf

            Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

            Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

            Meds I have Tried:
            Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
            Lexapro< Bad reaction to this med!
            Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

            Dx With IC in Nov 2006 with Hydro/Cysto
            Hydro/Cysto Caused Bladder to Rupture.

            Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



            ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

            Comment


            • #21
              Ronda,
              I'm glad you got in to see her today after what happened yesterday. I also love my gyn, and I always feel so much better after a visit with him, so I can understand how it feels to go to the one dr you know will at least support you and not give you the run around. I hope the new uro works out and that your pain med situation is resolved soon. But I am glad to hear you sounding better and keeping on with the fight to get adequate treatment. It's rough, unfortunately that's what we have to do!

              Comment


              • #22
                I'm so sorry. I had a doctor like that and the only thing he would "give me" for pain were spinal injections and he, of course, signed me up to receive mail from a company I won't name encouraging me to try out all these implant things. I was REALLY angry at him giving out my home address. I have a feeling this guy I saw was getting some major $$$$ from the company to put in these implants. Just to clarify, it wasn't the interstim, but things similar to it.

                Please don't lose heart...ask for a different referral.

                *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.

                Comment


                • #23
                  Wow Ronda, So he had the nerve to tell you he does not treat people with IC for their pain! What an A******! I cant believe he told you that. I would never wish this disease on anyone, but he needs to have it for a good while and see just how painful and debilitating it really is! I just dont know what in the heck is wrong with these so- called doctors. And he is suppose to be a pain doctor for goodness sakes. Again, I am sorry. I am glad you are getting in to see a different uro. I hope she is much better than the last one.
                  Jen

                  Comment


                  • #24
                    Ronda, I'm so sorry this happened to you. But brava for you for speaking up for yourself, and for getting another referral to a different uro!

                    This is just so sad, it just shows how much ignorance there still is about IC among doctors. Darn it!

                    Blessings,
                    Lori

                    Comment


                    • #25
                      Thanks Sandy, Jen, Lori,

                      I cant believe either that pain doctors do not treat this disease well should I say this pain doctor..And what gets me is he even said he has done research and knows it has been compared to cancer pain..So I mean what the lol.. you know I am at the point now that I know that I am going to have to fight my way through all this because most of these doctors do not know enough about IC to do anything to help anyone..My GYN is so interested in it she even ask if I would bring her some recent research on it, so if anyone knows of a good link that is pretty recent please share it with me so I can bring it to her..Thanks Ronda
                      Hugs
                      Ronda

                      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                      Link to Patient Handbook:
                      http://www.ic-network.com/handbook/

                      Diet Reference Sheet:
                      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                      Meds I have Tried:
                      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                      Lexapro< Bad reaction to this med!
                      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                      Dx With IC in Nov 2006 with Hydro/Cysto
                      Hydro/Cysto Caused Bladder to Rupture.

                      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                      Comment


                      • #26
                        Check out Newsweek for a really good article on The New War On Pain. Very encouraging!
                        http://www.TheCraftyEwe.etsy.com

                        Comment


                        • #27
                          It is so depressing to think we have come so far in so many places and that there are still doctors out there that are unwilling to consider any alternative therapies and insult their patient by being unwilling to listen to their questions and opinions. I read these things and I think of my fourth urologist in a row (1993) telling me that there is nothing wrong with me and that I am just drug seeking. I can't believe how small that can make us feel, even when we know we aren't imagining things. It doesn't seem to matter how well informed you are, if the person you've probably waited months to get an appointment with, is uninterested in your opinion, you are back at square one desperate to find someone else to listen and help. I will offer the fabulous grouphug, because I know your frustration and I am petrified of the day, that I know will come, when I will have to stand before some uninformed, pompous, know it all that will try like hell to diminish me to a three foot tall helpless child.
                          I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.

                          DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.


                          I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.

                          Comment


                          • #28
                            Thank you Cia...

                            I am always in need of Hugs

                            Ronda
                            Hugs
                            Ronda

                            ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                            Link to Patient Handbook:
                            http://www.ic-network.com/handbook/

                            Diet Reference Sheet:
                            http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                            Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                            Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                            Meds I have Tried:
                            Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                            Lexapro< Bad reaction to this med!
                            Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                            Dx With IC in Nov 2006 with Hydro/Cysto
                            Hydro/Cysto Caused Bladder to Rupture.

                            Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                            ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                            Comment


                            • #29
                              I had a similar pharmacy situation where the pharmacist saw fit to question my medications and prescriptions here. My uro had given me Lortab 5/325 for break through pain and then I had a cyst w/hydro done and he did a biopsy, dialation and ulcer ablation while he was in there. When I woke up from anesthesia he told me I would probably need more pain meds so he gave me a written script for Lortab 10/325 and the directions that allowed me to take more and more often than the 5/325. When my husband took the script to get it filled the pharmacist would not fill it because I had some already. When my husband explained the situation and that even if I took 2 at a time what I had to get it up to the 10mg that I would run out in a couple of days. He was going out of town in 3 days so he wanted me to be all set when he left. The pharmacist still refused to fill so my husband had the doc paged to call him. When the doc called and my husband told him the situation he was so mad. He said that they are "practicing medicine without a license and that is illegal and grounds to be reported". The doc talked to the pharmacist and told her all of that and she told him that he needed to turn me over to pain management. He told her that I was in pain management that he was managing my pain and she was standing in the way of that. Bottom line is she hung up from the doc and said he agreed that I needed pain management and did not need the script. What she didn't know was that we had the call on a three way call and I had heard the entire conversation! He took the script from her and went to another chain pharmacy and they filled it no problem. The next day my husband went in to the pharm to talk to the manager and told him everthing that happened. It turns out my doc had already called and was livid (we had paged him again and told him what the pharmacist told us he said) and he would be reporting the store and the pharmacist.

                              Through all of that I learned that the pharmacists and the insurance company cannot override anything like that the doctor has ordered. It is considered practicing medicine without a license and is illegal. If you use that exact phrase to them a lot of times they will back down because it scares them that you know about that and that they don't have all the power. Sorry this is so long but I thought this might hielp.
                              momw/ic
                              ICN Member
                              Last edited by momw/ic; 07-10-2007, 11:18 PM. Reason: quote messed up
                              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


                              • #30
                                Thanks for the info..
                                Hugs
                                Ronda

                                ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                                Link to Patient Handbook:
                                http://www.ic-network.com/handbook/

                                Diet Reference Sheet:
                                http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                                Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                                Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                                Meds I have Tried:
                                Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                                Lexapro< Bad reaction to this med!
                                Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                                Dx With IC in Nov 2006 with Hydro/Cysto
                                Hydro/Cysto Caused Bladder to Rupture.

                                Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                                ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                                Comment

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