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  • Hurting....

    So I tried to take doxycycline a few days ago, as I have never tried to take meds before to see if there was even a remote posibility of a mysterious infection. I am flaring SO bad, my urethra feels like it is swollen SHUT and literally it feels like I have a basketball in my bladder. I have had to strain so much to get any pee out at all, and I feel SO raw down there!!!!!!!!!! I know its the antibiotics as I have not done anything different. Im scared now, how long will it take for this feeling to go away if I stop the antibiotics.!!!?? I ussually am able to feel better normally after taking a hot shower but I havent been able to since I started taking these meds.

    I DONT KNOW WHAT TO DO. Im going to the dr today, I will ask him about hydroxicine... is this a good idea? I think I will also ask him if I can start taking 4 elmiron rather than three.... I am so miserable I could just cry right now, Most of the time I have hope! I do! I think it is possible to get to a point where you dont think about your bladder... eventually........ but right now I am hurting and sad, and I have no one to turn too. Last night I begged my boyfriend for a tylenol or something medicine wise at his house.. he couldnt find anything, but his respone was "oh do you have a headache hun" I lied and said yes because I didnt want to say oh my bladder is hurting my bladder is ALWAYS [email protected]#$%ing hurting.... I hate talking about it to hum becaue he just gets lost and sick of me talking about it.... NO ONE gets it, I feel useless and overwhelmed and desperate to say the least. I have been in bed since I tarted the antibiotic because it hurts to much to get up!

    Help...
    28 yrs old,

    I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

    What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

    Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



    Me in my graduation gown!


  • #2
    Jinny, were you tested for an infection? It almost sounds like something that has gotten out of control. You might need a culture and sensitivity to determine the correct dose.

    It also could be a yeast infection that came after starting the antibiotics. Please go to the doctor to get evaluated. We can all speculate here, but we cannot really tell what is happening like a doctor.

    Sending you encouraging hugs!!
    Julie Beyer, MA, RDN
    IC Dietitian, Patient Advocate, Speaker, & Author


    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

    You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

    ........ ........


    Other IC Diet Resources:

    IC Diet Webinar
    IC Diet Website
    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
    Free IC Diet Booklet: What Can I Eat?
    Confident Choices IC Diet Blog
    IC Diet Newsletter


    *Let's Connect!*

    Comment


    • #3
      Hey, yes I have been tested for infection after infection.... all clear I was tested for ureplasma yesterday and not sure of the results yet, but thats why I was taking the antibiotics to make sure I guess, but I am having the worst reaction to them and im burning and in pain. No urine infection at all... just in unbeliveable agony right now!!!!!!!!! I almost want he dr to send me to the ER so I can get morphine. I dont know what else to do but Im panicking right now. I have the appt at noon and im crying in pain right now I just want someone to help me....!!!!!!!!!!!!!!!!!!!!!!!
      28 yrs old,

      I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

      What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

      Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



      Me in my graduation gown!

      Comment


      • #4
        But what about yeast, Jinny? That is a very real possibility.
        Julie Beyer, MA, RDN
        IC Dietitian, Patient Advocate, Speaker, & Author


        Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

        Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

        You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

        ........ ........


        Other IC Diet Resources:

        IC Diet Webinar
        IC Diet Website
        For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
        Free IC Diet Booklet: What Can I Eat?
        Confident Choices IC Diet Blog
        IC Diet Newsletter


        *Let's Connect!*

        Comment


        • #5
          Pretty sure no yeast, I dont have itching or any crazy dicharge (other than the crazy discharge I have had since this started) I think I am having a reaction to the antibiotics big time, as I was ok before I started them I know on here we arnt drs but I feel so so alone right now, not sure if I should go down tot he drs office and try to get in early or ask if I should jut go to the ER. I was just there yesterday in the ER! Although not for pain like this, just for the uraplasma test. Im sure they all think im fricken nuts... I could just scream I have never had this pain before.!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
          28 yrs old,

          I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

          What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

          Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



          Me in my graduation gown!

          Comment


          • #6
            So I went to the Dr. and he told me to stop taking the antibiotics.... He also gave me 4 weeks of diflucan, and is ordering me some pyridium.. I feel a little better, hopefuly now that I am off the antibiotic I will stop flaring!!!!!!!!!!!!!!
            28 yrs old,

            I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

            What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

            Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



            Me in my graduation gown!

            Comment


            • #7
              I couldn't pee either. I went to the ER Monday night because it had been about 24 hours since I was able to void more than a few drops (literally drops), they cathed me, and more than 700 ccs of urine came out. I was crying and shaking in the waiting room. My husband was really freaked out. I will never let it get that bad again. I would definitely suggest an ER visit if you can't go soon. Caths suck, but not as bad as severe retention. I actually had to leave the cath in. I am going into the uro tomorrow. I hope he will take it out, but I am afraid he will make me wear it for a while. Good luck, and be careful, you know your body, you know when something is wrong.

              Comment


              • #8
                I hope you're feeling better this morning. Please don't strain to urinate --- it will only make it worse.

                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
                  Thanks Donna, I do feel a little better not by much though... im gonna try and put an ice pack down there at some point today. The straining part is bad I know but I cant help it.. Last night I was on the toilet for AN HOUR TRYING TO PEE. I felt like I wa trying to have a baby on the toilet. lol. Not good.... Ussually I try not to do that... I really need to get a catheter. I had one but my mom threw it out because she felt that I needed to pee without it.. go figure... people dont get it. Would they have a catheter at just a dr.s office?
                  28 yrs old,

                  I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

                  What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

                  Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



                  Me in my graduation gown!

                  Comment


                  • #10
                    Your urologist should be able to cath you, but don't wait if it gets bad. Its no good to let it get that bad. They finally took my cath out today, I was able to pee on my own, but I am concerned that I won't be able to for long, I can feel it starting to swell again, I am taking half a pharmacy everyday, and I am sure the meds make it worse in some respects, but I have to have something for the pain, it just gets unbearable. I do hope that you feel better soon.

                    Comment


                    • #11
                      awwwww jen my heart feels for you when i read this post. i have been in this type of situation many times excruiating pain with no one in real life who understands.you were really making progress with your ic and tryin different things and so forth and this hits you out of the blue.. seems like its always like that with ic.im thinking the same the antibiotic set it off. im glad u went for the uraplasma test ive considered that myself.go to the er when its really bad. they will set u up with iv antibiotics if u need them,fluids,and iv pain meds.sometimes we just have to go to the er its our only choice when we cant get a drs appt or drs are closed.not being able to pee is the scariest feeling in the world and catheters,while they are uncomfortable,help move the process along.read my relaxation post. i tried a cold bath and some other stuff one day and it really helped.sometimes cold or even ice works when heat wont like it usually does. praying for you sis.
                      Newly IC diagnosed as of February 2011.

                      Medications I'm on that seem to work:
                      Zoloft- one once a day
                      Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                      Failed Meds:
                      Elmiron-after 4 months,digestive side effects got to be too much
                      tramadol-allergic
                      DMSO treatments(5-6)
                      probiotics

                      THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                      AROMATHERAPY-candles,incense
                      Village Naturals Aches and Pains Peppermint Bath Salts
                      Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                      ACUPUNCTURE/HERBS
                      Significant pain relief so far.

                      MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                      ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                      Add me on facebook Angela Hasic

                      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                      Lord, make me an instrument of your peace;
                      where there is hatred, let me sow love;
                      when there is injury, pardon;
                      where there is doubt, faith;
                      where there is despair, hope;
                      where there is darkness, light;
                      and where there is sadness, joy.
                      Grant that I may not so much seek
                      to be consoled as to console;
                      to be understood, as to understand,
                      to be loved as to love;
                      for it is in giving that we receive,
                      it is in pardoning that we are pardoned,
                      and it is in dying [to ourselves] that we are born to eternal life.

                      Comment


                      • #12
                        oh and ask your man to give you a massage or get to an acupuncturist asap.
                        Newly IC diagnosed as of February 2011.

                        Medications I'm on that seem to work:
                        Zoloft- one once a day
                        Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                        Failed Meds:
                        Elmiron-after 4 months,digestive side effects got to be too much
                        tramadol-allergic
                        DMSO treatments(5-6)
                        probiotics

                        THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                        AROMATHERAPY-candles,incense
                        Village Naturals Aches and Pains Peppermint Bath Salts
                        Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                        ACUPUNCTURE/HERBS
                        Significant pain relief so far.

                        MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                        ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                        ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                        Add me on facebook Angela Hasic

                        ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                        Lord, make me an instrument of your peace;
                        where there is hatred, let me sow love;
                        when there is injury, pardon;
                        where there is doubt, faith;
                        where there is despair, hope;
                        where there is darkness, light;
                        and where there is sadness, joy.
                        Grant that I may not so much seek
                        to be consoled as to console;
                        to be understood, as to understand,
                        to be loved as to love;
                        for it is in giving that we receive,
                        it is in pardoning that we are pardoned,
                        and it is in dying [to ourselves] that we are born to eternal life.

                        Comment


                        • #13
                          Angela, what kind of herbs are you taking??? I am flaring, but no where near as bad as what you guys are talking about. However, I know how you guys feel since that was pretty much what I was dealing with before I was diagnosed. I didn't have retention, but I was in a lot of pain and was peeing ALOT!!! Like, every 15 minutes. I also found that the only way I could sleep was by taking a Vicoden. Good luck to all of you. I hope that you can find something that works. Don't give up hope. I get down sometimes too, but I have to keep reminding myself that eventually, I will find something that works long term.

                          Comment


                          • #14
                            i was taking a customized chinese herb formula made for me by my acupuncturist. i no longer take it though this pain patch keeps my ic under control for the most part. i saw a little bit of difference w/ the herbs acupuncture helped me the most for pain relief.
                            Newly IC diagnosed as of February 2011.

                            Medications I'm on that seem to work:
                            Zoloft- one once a day
                            Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                            Failed Meds:
                            Elmiron-after 4 months,digestive side effects got to be too much
                            tramadol-allergic
                            DMSO treatments(5-6)
                            probiotics

                            THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                            AROMATHERAPY-candles,incense
                            Village Naturals Aches and Pains Peppermint Bath Salts
                            Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                            ACUPUNCTURE/HERBS
                            Significant pain relief so far.

                            MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                            ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                            Add me on facebook Angela Hasic

                            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                            Lord, make me an instrument of your peace;
                            where there is hatred, let me sow love;
                            when there is injury, pardon;
                            where there is doubt, faith;
                            where there is despair, hope;
                            where there is darkness, light;
                            and where there is sadness, joy.
                            Grant that I may not so much seek
                            to be consoled as to console;
                            to be understood, as to understand,
                            to be loved as to love;
                            for it is in giving that we receive,
                            it is in pardoning that we are pardoned,
                            and it is in dying [to ourselves] that we are born to eternal life.

                            Comment

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