Announcement

Collapse
No announcement yet.

URO gave me a referral to pain clinic

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • URO gave me a referral to pain clinic

    Ok,
    I had THE talk with my URO that another ICN member had posted about awhile back, and I explained to him that I could just not go on this way with the pain I have every day.. I at least have a level 3 pain every day and when flaring it goes to a 10.

    So I told him.. I know you cannot keep writing me scripts for pain meds because I can tell when I call you dont like doing it because it takes so long for you to get back with me..

    And he said ...Ronda its not that I dont want to give you somethng for your pain because I know your are in pain I seen your pictures from the hydro and you have one of the worse cases of IC of any of my patience so I know you are in pain..Its just I am a URO not a pain doctor.

    So I said then could you please give me a referral to someone who can help me and he said YES thats no problem..

    I was shocked! I thought it would be alot harder than that.. I did ask him if this pain doctor was aware of IC and he said yes and he treats IC patients for thier pain..So my doctors nurse faxed my info over and they are suppose to call me to schedule an appointment..

    So anyone out there struggling with this, I think it is a good idea to have that talk with your URO if he is refusing to give you pain meds..It worked for me..Now wish me luck with the pain doc..Thanks 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.

  • #2
    I'm so glad that you got the referral!! I hope everything works out great at the pain mgmt doctor! Good luck!

    *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


    • #3
      :woohoo:

      Comment


      • #4
        That is so awesome Ronda!:woohoo: I am soooo happy for you. We were just talking about this so I'm glad you got the guts up to do it. I think that if my pain does not go back down some then I am going to move up my appt with my uro and ask him to send me to one too. I don't want to have to ask once every couple of weeks and stress and worry about if I'm going to get some and stress and worry about when to take what I have because I don't want to be w/o. Ugh!

        Now I'm waiting for HR to call me back. My supervisor thought that once I had filed for FMLA even though the paperwork wasn't back from the dr yet that I could leave if I needed to, there shouldn't be any reason why it woudln't be approved, even the head of HR said so. Now my supervisors supervisor is saying that she thinks it has to be approved before I can use it. Well I was going to use it for the first time this afternoon because I am flaring and everything I go to the bathroom I start to sweat from the pain, ugh!!!!

        I hope she calls back soon, sorry to take over your post Ronda, I'm soooooo happy 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 I am so glad he agreed my stress level was really going up I felt humilated because I felt I was begging.. No one with pian should ever have to feel this way, but I know many of us do..I just hope this pain clinic is a good clinic...

          Christine,
          When you get a chance would you please PM explaining how the family act plan works? 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


          • #6
            Thanks Briza for the tips
            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


            • #7
              I'm so glad you had the courage to talk to your uro about needing help for pain (I know how hard that is!) and I'm so glad your doc was reasonable and gave you a pain management referral! That's wonderful! I'm keeping my fingers crossed for you that your pain doc will be compassionate and will help you a great deal with the IC pain.

              Blessings,
              Lori

              Comment


              • #8
                Thanks so much Lori,
                It scares me to death though to think I might have to rely on pain meds for the rest of my life. This is really not the route I wanted to take, but I dont know what else to do

                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


                • #9
                  Pelvic pain

                  Hey all,
                  I am writing this post to let you know that I have been referred to the president of the international pelvic pain siciety of which I have never heard of and I need all the prayers I can get, not just for me but that something good will come out of this for all of us. My doctor said I have been just grasping for straws as I have took a truck load of any thiing I even thought might help. Anyway I just had an appt. with a uro-gynocologist and was told that he just did not have any ideas and that I was to far along to help and for me to go to this pelvic pain specialist. Haven't heard when I have to go but I am so in hopes that he can help all of us. Have any of you ever heard of a pelvic pain specialist. I kinda hope not, cause I am praying for some new things for all of us for a cure, without having bladder removeral. I told my doc. I was willing to be a guinea pig for all if they could help us. I'm not that good, just that desperate. I just thought that sounded sort of boastful and I surely did not mean for it too. I am too insecure to be boastful, lol In reference to the statement above about not hearing of a pelvic pain spec. I meant It is sort of like praying for a bladder infection when you go to the doctor just in hopes that it is an infection instead of ic. I am just ranting and my mind is going faster than my fingers so I will shut up now and thank you in advance for the prayers that will go up for this, Hope all is doing well today. I have truly been blessed since I found this site just to know that I am not just some whiney baby or whatever that takes too much meds. I have been told that. Love you all

                  have a blessed day

                  J.J.

                  Comment


                  • #10
                    :woohoo: :woohoo: :woohoo: :woohoo: :woohoo:
                    'The will of God will never take you where the Grace of God will not protect you.'

                    Comment

                    Working...
                    X