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  • That was short lived

    Did the heparin/lidocaine instill again this morning. It only helped with the pain and irratation for as along as I could hold it, which was only 1 1/2 hours. As soon as I pee it out all of it goes right back to what it was. For some unknown reason the pain/irration keeps getting worse. Even with the tens on. Without the tens on I couldn't stand up or lay down. I don't really know what to do anymore. I did try doing just the lidocaine instill but that did nothing at all.

  • #2
    I'm sorry they're not working for you sweetheart. The instills didn't work for me either.... did you try Elmiron?? I'm sure you have. Hmmm I wish I had an answer for you. Do you do them at home or at the drs?

    Rach
    ***Rachel***

    Dance like no one is watching
    Love like you've never been hurt
    Live today like it's your last

    Dxd with IC in June '06

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    • #3
      I tried elmiron by mouth and instill. Have been having the heparin/lido done once a week at docs for many years and it helped with the bathroom peeing for two days. Decided to try it at home and for a while it was helping with the pain and irratition. Now it only helps for as long as I can hold it. I will say I havn't had to get up at night to pee so was thinking maybe that was why. maybe peeing at night helps with the pain? I don't know anymore. racking my brains (what few I have left ) trying to come up with something for the pain and irratation. I don't see how it could feel so bad inside.

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      • #4
        I know it's hard to hold the med inside for a long time!!! god I rmember how horrible it was. The best was after I had the hyrdo distension done with anesthesia they put some meds inside my bladder. When I work up my friend amanda was sitting with me holding my had. I felt like I was soooo drunk! I told the dr I had to pee so bad. She said I can go if I can stand up and go to the bathroom. Of course I couldnt so my friend helped me up and went in the bathroom with me. I was peeing and that stuff she put in came out and made a funny sound. lol amanda looked at me and was like EWWWW hahaha.

        I wonder if it is just my body that makes that sound or is it everyone? wierd I know. anyways maybe you should try another instill with different meds. You also said that when you were going to the dr's it felt better. Maybe you're doign it wrong? i dont know... I dont understand how you can do it your self... I dont even know where I pee out of hahaha!!!! I hope you feel better soon.
        Rach
        ***Rachel***

        Dance like no one is watching
        Love like you've never been hurt
        Live today like it's your last

        Dxd with IC in June '06

        Comment


        • #5
          Was the sound you heard while peeing air? I get that all the time after doing the instills. Funny I didn't know where I pee from either before all of this. Maybe since I'm almost laying flat on my back at the doc's when he does it that it makes a difference. I've tried adding other things and the bladder is never happy with them. I had the hyrdo done 3 times but didn't seem to help any.

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          • #6
            I am so sorry that you haven't had relief from the instills.. I hope you find something that will help you soon.
            TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
            My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

            Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
            Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
            I post to encourage and offer total support for rescue instillations.
            Find me on facebook: L. Clark Thomas
            Louann

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            • #7
              Well, I found out it was the davacet causing the extra pain of all things. Why all of a sudden it was doing this I don't have a clue but I haven't taken one since morning and the pain level is back to normal and the instill I did late this afternoon is helping now with the pain and irratation. Gee, how can things change so drastic?

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              • #8
                Originally posted by waterflow View Post
                Well, I found out it was the davacet causing the extra pain of all things. Why all of a sudden it was doing this I don't have a clue but I haven't taken one since morning and the pain level is back to normal and the instill I did late this afternoon is helping now with the pain and irratation. Gee, how can things change so drastic?
                :woohoo: :woohoo: :woohoo:
                TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                I post to encourage and offer total support for rescue instillations.
                Find me on facebook: L. Clark Thomas
                Louann

                Comment


                • #9
                  If the instills are helping at all, it could well be that as times goes on, they will help more and more. I do hope so.

                  Sending warm well wishes.

                  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

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                  • #10
                    Is the Darvocet that you are taking white or is it bright pink?
                    The bright pink one caused me bladder irritation, but if I get the dye- free white ones, they are very helpful with no residual irritation afterwards. They're a hassle to order, but worth it.

                    I also found when I did instillations, that my bladder did not like Lidocaine, but tolerates Marcaine fine. Might be worth a try...

                    Amazing how picky my bladder is...
                    Kadi

                    -------------------------------------------------------------
                    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.
                    ------------------------------------------------------


                    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                    Source - Pinterest
                    "


                    Current treatments:
                    -IC diet
                    -Elavil 50mg at night
                    -Continuous use birth control pills (4-5 periods/year)
                    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                    -Pyridium if needed,
                    -Pain medicine at bedtime daily, as needed during the day several times per week
                    -Antibiotic when doing an instillation to prevent UTI
                    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                    -Dye Free Benadryl 50 mg at bedtime
                    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                    -Managing stress= VERY important!
                    -Fur therapy: Hugging the cat!

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                    • #11
                      It is the pink darvacet and things are much better this morning. Even some of the extra back pain I was having is gone.

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