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

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

    Ok I went to the pain clinic..They were all real nice.. The nurse went over my whole file and ask lots of questions..But!!! When the doctor came in he said the only way they treat IC is with Interstim

    I told that I respect his opinion because he is they doctor BUT! It has been proven that the interstim only helps with frequency..

    He said where did you hear that?

    I said I have done my research and read many lectures and reviews and it is proven that it does not help with pain..

    He said well... That is the only treatment I will recommend for Interstitial Cystitis.

    I said well have you had any IC patience that has had this proceedure done and it has gave them relief and he said yes many..He said they have a new way of putting the implant in that will provide pain relief.

    Ok so why hasnt thousands of people on the ICN gone running to get the interstim? Is what I wanted to ask him

    So now I am confused, either hes lying or I have missed something in my research. Does anyone have any answers for me?

    Now I am back to the beginning, crying and hurting knowing I will be out of pain meds soon with no way of getting anymore..I pray to God something will give soon. I just cant go on hurting like this..

    I am going to GYN tomorrow, she is the only one who seems to care, I know she want give pain meds, but I do know she cares and will help me in other ways..

    Hugs to all... Pray I will quit crying soon..


    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.

  • #2
    leelee...All I can do to help you is to let you know that I care and send to you some (((hugs))).
    Sharon

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.



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

    Link to the IC Diet:
    http://www.ic-network.com/diet/


    IC 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


    • #3

      Oh Ronda, I am SOOOO sorry it turned out like this! I wish there were something I could do! A referral to a diferrent pain dr is in order here! They are not all like that!!!!!!!!! Hopefully your gyn will refer you to someone else who knows what they're talking about!!!!

      Comment


      • #4
        ((((((((Ronda)))))))))) I'm so sorry that your appt didn't go well for you. I was really hoping you were going to get some help from it. Didn't your uro say that the pain dr knew about IC? I would call the uro's office and tell him that this pain dr was not willing to help you and see if there is another one that you can see. You're not the only one, I have read over and over again that the interstim is only for freq/urgency and not for pain. It seems that some people get some pain relief as an added bonus but not total pain relief.

        Ugh, I can only imagine how frustrated you are. I know that you were really hoping this would be the help that you needed. Maybe you're gyn will know of a better pain managment dr. I know that you have plenty of people to talk to but you have always offered a call if I needed it and I would be more than willing to do the same for you.
        Christine



        I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
        1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
        2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
        I have tried every oral medication as well as rescue instills and DMSO.

        I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

        Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
        Also proud mom to the best Bullmastiff on earth, Claus

        Comment


        • #5
          Thanks all of you, I have finally stopped crying and am really mad.. Its not helping my flare any..

          I am hoping when the Topamax is increased I will see some inprovement, but if not I am just going to begg for the Elavil back and just go on some kind of diet..At least with the Elavil I would have more good days then bad.. But I really feel that increasing the Topamax is going to help, I just think I am on to low of a dose right now...Thanks again for all of you supporting me.. It means so much to have all of you honestly ((((((((((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


          • #6
            ok ronda,first of all thats a crock.please take some deep breaths,and listen up,lol! ok when i was first referred to a pain specialist,they told me only nerve blocks and interstim.i was freaked out and crying like you.i called my specialist and informed her what they told me.she was maaad,could not believe they said that.at first i thought that was it,i would just have to deal with it.well the next day she called me back and said she has already referred me to someone new,and that she called the old place up and told them she would never send another ic patient to them!!! thats when i finally learned to trust her.(i just recently moved and left a wonderful uro)the place i go to now has been wonderful,we have already tried a few new things,i am on lortab for breakthrough,and kadian for long term pain.they also started me on neurontin to go along with my elavil at night,and we will start doing pt this month.needless to say,i feel so much better now.there are other places out there,i know it sucks big time when that happens.now you just have to recoupe and make some phone calls!i hope everything turns out good for you.jamie

            Comment


            • #7
              Thanks Jamie,
              I will make them phone calls tomorrow.. But I have lost faith to in my URO so we will see... Only one I trust is my GYN.. I will see her tomorrow and tell her what he said..
              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


              • #8
                I would definitely see a different pain specialist. Even the interstim makers will state that it is not for pain.

                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


                • #9
                  Ronda,
                  Before I saw the pain dr the first time I got a lot of positive responses here regarding pain clinics and pain drs.. Don't give up, make those calls tomorrow, inform your uro about what happened and your gyn, and you WILL find someone who will help you. I feel that in my heart. I'm so upset about how this turned out for you. I've had my share of disastrous first dr appts, I know how you feel, it sends shudders down my spine that you had to go through this. Sending you hugs and strength

                  Comment


                  • #10
                    Ronda,
                    I am so sorry he did this to you. I hope our conversation, and compairing the 2 treatment plans helped you to understand a bit better about the other one,
                    you know if you need me I am right here for you.
                    'The will of God will never take you where the Grace of God will not protect you.'

                    Comment


                    • #11
                      Ronda,

                      I am so sorry to hear about your pain specialist nightmare. Everyone is right in that not all pain clinics are that way AT ALL. I have a wonderful pain specialist (luckily). He increases or decreases my pain medication regimen according to talking with me and as long as you don't break the rules and seek out narcotics anywhere else. He has a rule that if you obtain narcotics anywhere else that you have to notify his office/nurse within 72 hours. This past month, I obtained burns on my upper legs that were 2nd and 3rd degree burns and I was written 150 Vicoprofen/Vicodin as they were healing. As long as you don't "appear" to be drug-seeking, then you're okay.

                      However, I understand why many have complaints about pain management clinics. The physicians pretty much run the gamut of professionalism or lack thereof. What I really hate to see is the situation I face everytime I fill my medications....like today when the pharmacist at our local store (the only one in our town that carries all my meds: Duragesic/Fentanyl, Valium and Mepergan Fortis) read me the riot act stating that he basically does not understand why I take so much medication for pain. At first, I tried reasoning with him and told him about IC, but he thinks it's "all in my head.." I complained to the store manager today though, backing my complaint with the argument of why a physician would write my medications if he did not think I need them. My current pain specialist has an awesome bedside manner, but I have not always been that lucky. When I went to pain management through an Ortho group, they thought the only justification to taking narcotics was a bulging disk or some other "radiographic abnormality" and since IC usually shows nothing in the urine except maybe blood in the urine, some think it's all in our heads and a psychiatric condition.

                      I really hope they do more research on this Antiproliferative Factor (APF) present in the urine of most IC patients. Having something "concrete" in lab work or the urinalysis would go a long way for those of us who face daily skepticism by family members, friends and professionals. I love a nickname coined by ICSarojini called the YDLSS (You don't look sick syndrome) because so many of us face daily, life-altering complications from IC and don't get good treatment.

                      On a final note: the pharmacist apologized once the manager spoke to him rather harshly. How was he to know that I wasn't a cancer patient or something? There are many people who walk around on the street that have stage four cancers who take pain medications like ours AND finally if the April 2007 edition of Woman's Day magazine states that Interstitial Cystitis is "pain worse than childbirth," there is something to be said about that. But then, on here we all agree mostly and getting defensive on this board is a way to vent for most of us...at least for me when the world doesn't listen.
                      Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                      Comment


                      • #12
                        Ronda, I am so sorry your appt. didn't go well. You can read my post, but my gp was cool with what I wanted, so right now I am not seeking a pain clinic, I asked him point blank did he know of a pain specialist that dealt with IC and said NO, this is from a dr. at a teaching hospital Vanderbilt. So I think that made him think about treating my pain. Sorry, sending you hugs and hopefully your gyn will help you tomorrow.

                        Comment


                        • #13
                          Hi Ronda.
                          I am sorry your appointment did not go well. I would download a ton of info on the interstim and send it to this pain doctor. The interstim's soul purpose is not to relieve pain, and like someone else here said, the makers of the interstim will even tell you and for-warn anyone contimplating getting it done that it is not a pain cure.
                          I have heard from several of my friends that a pain clinic is not the way to go, but rather try and see a pain specialist, then you do not have to go throguh all the crap with seeing a ton of different doctors that you do not need( physcologist, therapist, counselor, etc...).
                          I cannot believe this doctor told you this. How uneducated he is regarding IC obviously. I am so sorry Ronda. I would look into seeing someone else, but I would send him info about the interstim so that he does not keep telling people to get this surgery to relieve pain, for there will be alot of disappointed people out there, especially people who do not do their research and just take the doctor's opinion faithfully.
                          Jen

                          Comment


                          • #14
                            Thanks Jen,
                            He also gave me a pamplet on a neurostimulator and said he uses these devises to..Cindy <Tig-gal and I did research on this and yes it would be good for people who have pain, but constant severe pain never ending pain. I just need something to get through my flares which last about 3 days then I am back to about a 2 or a 3 which is still painful but I dont think I need a nerve stimulator for that, it is also a costly proceedure and only work in 50% of patience..And is risky due to the fact they are inserting th wires in the nerves..I really think this doctor is just looking for a way to make money, because he would not offer any other suggestions.. It was that or the interstim..Think hes nuts!!!

                            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


                            • #15
                              Yes Ronda, I agree with you. I do not think he has your interest in mind, more like making $$$$. This is terrible. Any GOOD doctor knows that invasive procedures should be used only when all and I mean ALL other avenues have been tried. Why didn't he try you on some different pain type meds that you could maybe take to get you through when you are having a very bad time.
                              I would think that sounds much more logical.
                              Heck, you dont see doctors rushing their diabetic patients off to get a pancreas transplant right away do you? I mean, he is going to fast here. I agree with you Ronda, he does sound nuts!
                              Jen

                              Comment

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