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  • Frequency question

    I have another question (bare with me guys)!. My worst symptom is this constant, unyielding, never-ending need to urinate. As my bladder fills, the worse it is. Even if I empty, it doesn't go away. I know that pain is the most common symptom with you guys... but does anyone else have this never-ending urge to pee? Do your meds actually cut down that feeling? I'm on Elmiron (oral and instills), Atarax, and Ultram. I can't take Elavil.

    This feeling is driving me nuts!

    Thank you for your help! This is so hard for me!
    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

    [

  • #2
    I think pretty much everyone has that feeling.
    Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
    Wishing you happiness and good health, and all the best out of life.

    Peace, Carolyn
    ___________________________________________________

    Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


    On the Beach with IC

    Comment


    • #3
      Yes, when my bladder is irritated I feel like I have to go all the time. Luckily I can take Elavil, and when my bladder pain is under control I don't have that urge. However, whenever I get a flare-up (they're rare, but they do still happen) I get the never-ending urge to go along with the pain.

      Comment


      • #4
        YES!! That was my main problem.. I always had that feeling but also with throbbing to.. My GYN put me on Cymbalta she said it treats nerve pain, but also helps with depression.. It has help with both for me.. I also was taking Elavil but have to stopped due to it was making me gain to much weight very fast, so I am praying the cymbalta will keep that urge feeling away..


        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


        • #5
          I not only had frequency but I always felt like I needed to pee, even when I just got off the toilet. I just always felt full. OAB meds didn't work. All they did was reduce the stream to basically a dribble and did nothing for frequency, fullness, or urgency.
          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


          • #6
            Carolyn, I guess I just thought that most of you guys have moments with strong urges, but I didn't realize that the 24 hour, unyielding feeling was typical. Thanks for clarifying that for me! Boy I'm learning so much from you! Thank you!
            [SIZE="1"][B]Be well, Alyssa :hi:[/B]

            [

            Comment


            • #7
              jjt001, boy I wish I could take Elavil! Sounds like a lot of people get help from it! Thank you for sharing with me!

              Originally posted by jjt001 View Post
              Yes, when my bladder is irritated I feel like I have to go all the time. Luckily I can take Elavil, and when my bladder pain is under control I don't have that urge. However, whenever I get a flare-up (they're rare, but they do still happen) I get the never-ending urge to go along with the pain.
              [SIZE="1"][B]Be well, Alyssa :hi:[/B]

              [

              Comment


              • #8
                Rhonda,

                I can't take Elavil, but you say that Cymbalta helps you a lot? Maybe I'll ask about it next week at my next instill.

                Thank you for sharing that with me! I am grateful that I can sleep better with my current meds, but I hate being awake because I can't stand this feeling!

                Originally posted by leelee88 View Post
                YES!! That was my main problem.. I always had that feeling but also with throbbing to.. My GYN put me on Cymbalta she said it treats nerve pain, but also helps with depression.. It has help with both for me.. I also was taking Elavil but have to stopped due to it was making me gain to much weight very fast, so I am praying the cymbalta will keep that urge feeling away..


                Ronda
                [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                [

                Comment


                • #9
                  L. Thomas, so have you found a way to treat your symptoms better? I am in the early stages and everyone says it will get better (I HOPE SO!).

                  You sound exactly like me (those OAB meds gave me wicked retention and I had to strain to give a trickle).
                  [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                  [

                  Comment


                  • #10
                    Home Instillations work for me. I know that there are a lot that have problems and this doesn't work for them.

                    I have several signs that tell me I need an instillation. The full feeling and waking up more than 4 times at night or going more than every 90 minutes tells me it is time to do something ( and of course the "walkin farts" is alway a dead give away! I think self-cathing takes care of some of the problem because it truly empties the bladder but the meds calm everything down and that gives the long lasting results.

                    I don't have the problem with going after the shower if I have had an instill within the last 2-3 days. My urogynecologist always tells me not to let the symptoms get ahead of me. It is hard to play catch-up. So I really don't try to put off doing instills.

                    I had to increase to at least once a day in the beginning because I was trying to "stretch" the instills. But as time has gone by I don't alway have to do an instill everyday. Sometimes I only need one a week and I think..."IC's gone"...NOT. I think I have finally realized that for me IC is like being diabetic. Sometimes it is in check (for whatever reasons) and sometimes it is not. Instills are my insulin.
                    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


                    • #11
                      L. Thomas,

                      My doctor hasn't mentioned home instillations to me (not yet at least). I was diagnosed 3 weeks ago. What is in your solution to make it help (just lidocaine, bicarb, and saline... or is there something like Elmiron or heparin). Thanks!
                      [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                      [

                      Comment


                      • #12
                        There are tons of recipes. Mine is pretty simple (in my signature). It is the only one that I have used. At one point before I knew what to watch for my urogyne suggested adding elmiron to the instill but I didn’t want to add it. I’m glad I didn’t now. It wasn’t the recipe, it was me not figuring out when I needed an instill.
                        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


                        • #13
                          I was hoping that after 3 weeks, my symtpoms would have been more improved... but that being said I am sleeping better. I don't know if my doctor does home instillations, but I will definately keep that door open. I really need help. I have been miserible for the last few days (and except for Sunday) I have followed the diet to a T.

                          Thanks for your help!
                          [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                          [

                          Comment


                          • #14
                            IC is tee-totally unpredictable. You may very well be completely under control in 3 weeks but you may have symptoms for years or a lifetime. That doesn’t mean you won't find a solution that works for you. I am not the least bit concerned that I will have IC symptoms forever. IC is a lifelong disease that has no cure, only effective treatment. My treatment takes care of my IC. If you have read on the boards you know that finding a doc that will treat IC appropriately is more than ½ the battle.
                            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


                            • #15
                              I like Urelle for the times that my bladder won't let up or when traveling. It turns your pee a pretty blue too.

                              Comment

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