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  • Going to uro again this morning

    Okay, I'm really nervous here. I'm going to my uro again at 9:20am. We're supposed to talk about how the DMSO treatment went last week and possibly do another one today. I've decided that I'm going to ask him what solution he is using and tell him that it makes me really nervous to use a solution that is stronger than 25%. I know that many have done 50% and not had any damage to their bladder but I don't want to take that chance no matter how small it is. I'm the primary breadwinner in my family, I can't risk having it get worse!
    I guess I'm also nervous that he will do the 25% solution because I was really really uncomfortable after the last one. I'm supposed to go to my appt and then come back to work. Ouch! I don't know if I'll be able to make it through a whole day.
    My co-worker who is also a really good friend just basically told me that I have to get through the day one minute at a time like everybody else does. Does everybody else here in the office sit at their desk in pain all day??? Then she said, this may be the way it always will be for you right? Ugh, this made me mad, it's like she's telling me that I should be able to make it through the whole day no matter how bad it feels.
    I'm really going to try because we really can't afford for me to miss more time from work but she doesn't know how uncomfortable and painful it is after that stupid DMSO! That kinda hurt my feelings and makes me mad. I don't want to be like this, I want to feel normal damnit!
    Ugh, wish me luck, and I'll let you guys know how it went
    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

  • #2
    Christine,
    I honestly dont see how you do it.. I can hardly drag myself out of bed some days..I wish you luck today.. But please remb that its your body and if you do not feel confortable doing the DMSO then tell your URO..If it makes him mad oh well... Like i said ITS YOUR BODY..lol I hope the best for you today let us know how it goes ((((((((((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


    • #3
      I think you're wise to tell them no more than 25% DMSO. If they're using Rimso50, that's 50% DMSO so it needs to be further deleted. When I had DMSO, the solution was half Rimso and half water solution, then it was further diluted by instilling analgesic first.

      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


      • #4
        I was wondering about that Donna since I had read your posts about getting the DMSO yourself.
        I hope it goes well this morning. I am so nervous, I guess I'm afraid he won't be happy with me telling him how I want to have the DMSO done and worried about it hurting again when I get it done.
        These are the times that I still crave a cigarette. So happy that I quit though.
        Thanks for the hugs Ronda, ugh, 10 minutes until I leave!
        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
          Don't ever hesitate to ask questions. The nurse can tell you what's in the DMSO mixture.

          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


          • #6
            You have every right to know what is going into your body! I second Donna's suggestion; if you are that uncomfortable with him, perhaps bring it up first with the nurse. Also, for the future, could you schedule these appointments late afternoon and go straight home? I used to do mine Friday afternoons and have the weekend off - it helped immensely.
            Do let us know how you are - ((hugs))

            Comment


            • #7
              thats good thinking griffs. I am a chicken and wouldn't even dare to do it at all! I work in banking at a desk all day and sometimes sitting kills me too! I hope your apppointment goes well! I can't wait for you to post about how it went.

              Erika
              IC diagnosed officially via cysto/urodynamics 1/26/07

              Grade II Endometriosis diagnosed via lap 12/11/07

              "Fall down seven times, Stand up eight."

              "Life is a tragedy for those who feel and a comedy for those who think."

              Current Treatments:
              Interstim Since 5/25/07!
              Birth Control

              Comment


              • #8
                Well I just got back to work. I told the uro that I had read the study about the damage to the bladder muscle with anything stronger than 25%. He had to go and check with the nurse because he wasn't even sure what percentage they use. It was 50% but he didn't have any problem diluting it to 25%. The nurse did that and actually it didn't hurt nearly as much this time as the last time. It wasn't as bad with the cath this time and it wasn't as hard to hold it though I still really had to go after the 15 minutes.
                Hopefully my day won't be so bad, I already took AZO right before I walked out the dr and I'm ready with my vicoden if I need it as well as 2 liters of water and my heating pad. Thanks for the support everyone. What would I do w/o you guys!!
                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


                • #9
                  Well thats good news glad it was better this time
                  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


                  • #10
                    :woohoo: :woohoo: :woohoo:


                    I'm glad it was easier this time! Hopefully this will help!

                    Erika
                    IC diagnosed officially via cysto/urodynamics 1/26/07

                    Grade II Endometriosis diagnosed via lap 12/11/07

                    "Fall down seven times, Stand up eight."

                    "Life is a tragedy for those who feel and a comedy for those who think."

                    Current Treatments:
                    Interstim Since 5/25/07!
                    Birth Control

                    Comment


                    • #11
                      Thanks, I hope so too.
                      I just keep on telling myself that I can make it through the rest of the day. It's 12:42 pm right now and I'm working until 4:30 pm today. It's a little less than 4 hours left, I can do that, right? Ugh, that's what I tell myself. Bladder is not as bad as last time but not happy. Lots of burning and really can just "feel" it if you know what I mean. But I'm drinking tons of water and using my heating pad. I just hope it's slow the rest of the day. Ugh, to be normal and not to worry about this stuff must be nice.
                      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


                      • #12
                        Its just strange how something can hurt and burn so bad, but really have some good results.. They just scare me to bad..
                        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


                        • #13
                          Except for one time, I never went back to work after a DMSO treatment! Only reason I went back to work once was because I really wasn't schedule for one so after I had one I did and boy was I ever sorry. People said they could smell me a mile away! (I couldn't of course). As to your question of ever staying at work in pain, yes, I do a lot of times, but I have a very understanding boss who knows that when I am in pain that I don't get a lot of my work done so she doesn't expect a lot out of me- but when I am doing better then she expects more than 100%. I think there have only been a day here and there that I have taken off for my IC pain and one was recently and that was because I had a test and whatever they gave me to drink (something with acid in it) --said it taste just like 7up) anyway within a few hours I was in so much pain that I went home and stayed in bed for 5 days! (luckily 2 were Saturday/sunday). (I am also the primary breadwinner in my family, so I really don't have a big choice to be at home or at the office. )

                          Comment


                          • #14
                            Yea Mary,
                            I think that I'm going to try to schedule my other ones for the afternoon and not go back. I wish I was at home now but I really can't afford to leave. I have already missed two days on this paycheck and it's going to put us in the poor house as it is.
                            I told hubby though that he was in charge of dinner tonight and nobody is getting much out of me when I get home.
                            Only a little more than 2 1/2 hours left now. Time flies when you run to the bathroom every couple of minutes!
                            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


                            • #15
                              I think it would be a good idea to switch the DMSO treatments to Friday afternoons so you don't have to worry about going back to work. Since you have only had 2 treatments it really shouldn't matter if you switch to Fridays at this point. I have been doing DMSO treatments for the last 15 years and I always have them done on Friday so I have the weekend to rest. Just a suggestion but I think it would take the pressure off of you as well - it's hard to concentrate at work when you are not feeling well.

                              Comment

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