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  • Ic

    Hi I'm 19 years old from New Jersey. I have been diagnosed with ic since March of this year. Started with a UTI, which felt like it never left. The first few months of my diagnosis were constant excruciating pain - unbearable. Mainly urethra burning but the feeling of "always needing to go"bwas also present. Even after peeing I felt like I had to go. I had 6 weekly installations done which thank heavens relieved the burning. Now, my main struggle is the feeling of always needing to go 24/7. I can't get my mind off of it. It also has caused incontinence (urge I'm sure). Although I rarely feel urges just constantly needing to go. I don't hear many people battle incontinence with ic and although it's very embarrassing and heartbreaking, it is definitely to be blamed on my IC. Besides this, I've always been a healthy girl. I am strong but this is extremely hard to deal with. Tried Ditropan XL but side effects were too severe. It caused bad urinary retention and EXTREME dry mouth and constipation. Now on detrol haven't had a"leak" in 3 weeks. Fingers crossed and prayers being said, I hope this lasts. As for the constant feeling to go, the detrol doesn't seem to be making it any worse but the week before my period does. I feel better the five days on my period I almost feel IC free. But days prior to my monthly visit, I am confronted with such a flare it's practically impossible to fall asleep. Will mention to my Uro how she feels about melatonin before bed to aid with that. I'm posting for any feedback, suggestions, symptom similarities, anything. I need to talk to someone. This horrible disease is making me feel like the rest of my life will be miserable

  • #2
    Re: Ic

    Hello, was your UTI actually bacterially proofed? Any chance you have started taking birth control pills or similar lately?

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    • #3
      Re: Ic

      Originally posted by krist656 View Post
      Hello, was your UTI actually bacterially proofed? Any chance you have started taking birth control pills or similar lately?
      Actually bacterially proven. I was on Minastrin 24 fe and quit it to see an improvement with my IC symptoms. No luck. This all began with an actual UTI.

      Comment


      • #4
        Re: Ic

        Hiya Humble,

        Sounds like your bladder wall sustained some significant injury from that initial infection and that's probably whats now driving your symptoms.. i.e. urine going into the small wounds that the bacteria created which then irritates nerves that cause the frequency/urgency etc. etc. Do you know what kind of infection you had?? Ecoli? Klebsiella? another??

        Hopefully you've had the chance to review our educational materials… and that pelvic floor dysfunction often goes hand in hand with IC.. and could also be driving those symptoms. Here's a possible scenario:

        Infection > Prolonged Pain during treatment > Causes pelvic floor muscles to tighten and clench thus reducing blood flow to bladder, etc. etc.

        Or

        Infection > Injury to the Bladder Wall > Urine enters the wound and causes tissue irritation, inflammation driving symptoms.

        Have you had anyone look in your bladder yet?? Also, have you had a pelvic floor assessment?

        Jill O.
        ICN Founder
        Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

        Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

        Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






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        • #5
          Re: Ic

          Ecoli. Had cystoscopy done- no ulcers. Just inflammation at the base of the bladder. Urodynamics tests done .. All came back negative although still have "leaking" that I've never had my entire life. The UTI literally ruined my life, don't understand

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          • #6
            Re: Ic

            Well you have to remember that bacteria actually burrow into the cells, convert them into bacteria factories and then destroy them as the baby bacterial cells are released to do yet more damage. So, ultimately, we end up with lots of burrows or tunnels into the bladder wall that can take weeks to heal once the infection has been killed. So, again, if we follow that line of thought then the #1 thing that would provoke and/or worsen those symptoms is acid going into the tissue and causing irritation. So, are you following the diet? Even one cup of coffee, green tea or soda a day would prevent healing and trigger the symptoms you're experiencing.

            Jill
            Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

            Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

            Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






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            • #7
              Re: Ic

              I agree with Jill 100%. Even a small amount of coffee, tea, or soda could cause severe pain for days and days.

              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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              • #8
                Re: Ic

                Originally posted by ICNDonna View Post
                I agree with Jill 100%. Even a small amount of coffee, tea, or soda could cause severe pain for days and days.

                Donna
                Follow the diet. But it doesn't seem to help

                Comment


                • #9
                  Re: Ic

                  Originally posted by ICNDonna View Post
                  I agree with Jill 100%. Even a small amount of coffee, tea, or soda could cause severe pain for days and days.

                  Donna
                  I've been trying very hard to follow the diet. Will the diet alone heal the inflammation?

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