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It’s back the “Always got to go feeling” due to Lysteda

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  • It’s back the “Always got to go feeling” due to Lysteda

    I’ve been in a flare now for 7 weeks... I was in remission for 15yrs before this other than a few flares. A med to stop bleeding caused this flare. I now have the constant feeling to go and I’m in the process of pelvic floor therapy. I’m wondering if you guys can tell me what med helped the most for that always got to go feeling? Its like an itch you cant scratch and driving me insane!
    Last edited by ICNDonna; 01-11-2020, 07:52 AM.

  • #2
    I'm so sorry your symptoms have returned. Fifteen years is a long time --- just remember that you got there before and you will again. Sometimes what happens is that when we feel better, we tend to go back to the things that caused pain in the past. Unfortunately, IC is not usually a temporary thing --- it could be that there was something in the medication that was a bladder irritant, and it can take some time to get back in remission.

    I suggest you start with getting back on the diet if you've veered away from it. Do you know the name of the medication that caused this flare?

    Sending 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

    Comment


    • #3
      Yes it was Lysteda used for heavy bleeding during your period. I knew as soon as I took the pill my bladder reacted. My urine slowed down and it was hard to urinate. It affected my pelvic floor also. So here I am trying to bounce back. I now have weird symptoms I’ve never had before. Spasms in the pelvic floor, pressure in my back end and constant urge to go. This has really set me back and has caused me severe anxiety. But I will push through and do what I need to do to get to remission. I’m hoping I can’t get there without starting all over...it’s very frustrating and a scary.

      Comment


      • #4
        Did you test for bladder infection?

        Comment


        • #5
          My symptoms have never been affected by diet but I also don’t drink soda or eat spicy food. I stay away from acidic foods due to heartburn problems since I was young. Thanks for replying Donna.

          Comment


          • #6
            Yes I’ve had my urine tested three times. No infection. Doctor thinks the pill caused my pelvic floor to act up but this is new to me.

            Comment


            • #7
              But I thought I would ask what you guys took for the gotta go feeling? I know it’s different for everybody. What helps one may not help the other.

              Comment


              • #8
                I hope that once the Lysteda is out of your system you will feel better. You might want to try a smooth muscle antispasmodic in the meantime.


                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
                  The doc told me the Lysteda was out of my system awhile ago. I’ve done the research and this happened to one other woman. After she took the Lysteda she had the constant urge to go which caused pelvic floor dysfunction after 2 and half years of she had to get Botox into the pelvic floor. Now she didn’t specify if she had IC, that idk? I’m frustrated because these symptoms are all new do me. I’m on Vagina Valium but it don’t seem to be doing much for me. =(

                  Comment


                  • #10
                    I'm so sorry this is happening to you. I hope you'll find something that will give you relief soon.

                    Warm hugs,
                    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


                    • #11
                      Thanks Donna! Well in having this happen it has taught me a lot of things. One of the most important is ...you never know what kind of reaction your bladder is going to have with medication. I thought nothing of taking the pill to stop the bleeding, I didn’t even cross my mind that it could affect my bladder.... In doing the research after the fact, I came to find out that the pill is NOT to be given to anyone with microscopic blood in their urine! I ALWAYS have microscopic blood in my urine due to the IC. Had the doctor did a urinalysis this would not have happened. This upset me horribly... But I’ll do what I have to do to get back on track. It may take some time but I’m determined. And, I won’t ever take another med without doing my research ahead of time!

                      Comment


                      • #12
                        Originally posted by steelerfan View Post
                        Thanks Donna! Well in having this happen it has taught me a lot of things. One of the most important is ...you never know what kind of reaction your bladder is going to have with medication. I thought nothing of taking the pill to stop the bleeding, I didn’t even cross my mind that it could affect my bladder.... In doing the research after the fact, I came to find out that the pill is NOT to be given to anyone with microscopic blood in their urine! I ALWAYS have microscopic blood in my urine due to the IC. Had the doctor did a urinalysis this would not have happened. This upset me horribly... But I’ll do what I have to do to get back on track. It may take some time but I’m determined. And, I won’t ever take another med without doing my research ahead of time!
                        That's a wise decision. There are so many medications out there that it wouldn't be possible for our doctors to know everything about all of them --- fortunately, now we have the internet so we can do searches for side effect, precautions, and drug interactions --- I search any time I'm prescribed a new one --- learned the hard way.

                        Hugs,
                        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


                        • #13
                          Yes Donna, unfortunately I learned the hard way also. I agree that doctors don’t know all the side effects but the drug I was given can be quite dangerous. I don’t want this to happen to anybody that’s why I’m trying to let the IC community know to always search the side effects of the drug your given. We never know how our bodies will react to a new drug , that’s impossible to know until we take the drug. On the other side of this i feel the doctors need to ask some heath questions before they hand out meds. The drug I took can have quite serious side effects. I didn’t realize that till after I took the pill and did the research. I told the doc I had IC on the First visit he nodded his head and didn’t even write it down. I’m assuming he really didn’t know much about IC due to his response? What I don’t understand is... the pill is NOT to be given to anyone with blood in their Urine or any clotting disorders. I wasn’t asked any questions regarding those issues! The doctor at the very least should be giving everyone a urine test and and asking if they have any clotting disorders before the pill is given! Had he asked If I had blood in my urine I would have answered YES. I Just want to let the IC community know what happened to me so this never happens to anybody else. I DONT think the doc intentionally tried to harm me but I do feel he was negligent in how he didn’t ask me any questions related to my health ...being that the pill he gave me can have quite serious side effects. I don’t mean to seem angry or rude but I am frustrated. I was in remission for 15yrs with my IC under control, except for a few flares here and there...I know have been in a flare for 7-8 weeks. For the first two weeks the pain was so bad I couldn’t get off the heating pad. I had severe bladder pain and pelvic floor spasms and I could barely urinate within 20 min of taking the pill. I’m going to PT for the pelvic floor issues but it’s a slow process, I have a hard time walking due to the spams. When I do work I have to sit on a heating pad And wear a Thermacare wrap on my abdomen just to get through my work day? I’m now struggling with severe anxiety due to all the pain. I just pray I can get back to normal? Sorry for the long spill I just needed to get this out.

                          Comment


                          • #14
                            I'm so sorry you are in pain. And your sharing information about
                            Lysteda may help others who have it prescribed. I have put the medication name in bold so it will be visible to others. And I added Lysteda to the title of the post.

                            Thank you for sharing.

                            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


                            • #15
                              Thanks Donna!

                              Comment

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