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How worse IC, PNE, Prostatitis can go & what surely helps ?

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  • How worse IC, PNE, Prostatitis can go & what surely helps ?

    My husband was diagnosed of IC, a year back but still PT says its not IC. His symptoms have worsened too fast like sitting fills pelvic fills with intense stinging sensation, feeling of pressure around pubic bone, leakage of few urine drops, holding capacity decreased, poor stream & now night frequency

    Few questions
    A. Definite symptoms to distinguish IC from rest ? If not IC, is it still important to avoid irritant foods ?
    B. How worse usually IC, PNE, Prostatitis symptoms can become long term & what decides that ?
    C. Upto what extent PFD, Incontinence can go and be managed ? . Can with proper PT, you can sit on normal surfaces or use cushions everywhere ?
    D. What meds or therapies can help in general (immediate relief and long term) ?
    E. What all should be done to periodically asesess and monitor symptoms ?. What all can be done to build and maintain overall health?

  • #2
    Am I understanding that it is a physical therapist who is saying it's not IC? Has your husband been diagnosed by a urologist? What was the diagnosis? Is he on any medications to help?

    I think giving the diet a try for at least a couple of months is a good idea. Even if it turns out he doesn't have IC, it can't hurt --- and it just might help.

    The medications/therapies that will help can depend on what he has --- with IC, not every patient reacts the same to the various treatments so it can take some time to find what helps most.

    I know I haven't really given you any firm answers, but even though it does sound like IC is a possibility, it's not necessarily what's going on with him.

    Sending healing thoughts,
    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
      I agree totally with donna see a urologist have them do the test for IC, at least you will no the next step to take.
      <center>
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      • #4
        Few last concerns please

        Yes his urologist only told he has IC. Just few last concerns to plan future

        A. What symptoms I should look into, to see my IC isn't too worsening over time ?
        B. What decides how severe it can become over time or reach end stage symptoms ?
        C. On an average around what age IC patient can't work and what decides that age ?
        D. How imporatnt is to take muscle relaxants as I get incontinence, taking them?
        I am getting hari loss. though haven't taken elmiron for long. I think if I continue it, I will further loose hairs
        E. If there is problem with bladder linning inIC, how at times symptoms can go away totally
        F. How I can make sure upto what extent I need to avaoid irritant foods since at times even avoiding, can still cause flare

        tHANK

        Comment


        • #5
          To try to answer some of your questions. IC does not usually progress --- only a very tiny percentage of IC patients will get worse with time. I have had diagnosed IC for 36 years now and, if anything, I am better than at diagnosis --- I suspect that it's because we have found effective treatments and know which foods and drinks are a problem for me.

          I worked full time for well over 20 years with IC and took an early retirement when my husband was able to retire --- and we are both still active and even if we don't work away from home, we have six acres to look after.

          You might want to keep a food/drink/activity/pain diary to see if you can identify any flare-makers. I avoid my triggers even when I feel good --- because I want to stay that way.

          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


          • #6
            Thanks a lot...Trying to see long term picture

            His pelvic strength is ok as per bio-feedback but still PFD, bladder weakening progressing fast. Since he hasn't managed diet & IC well last 1 yr, is more strict diet control required initially (Is any decaf tea ok ?). What foods on priority he should totally avoid ?

            1. What al decides how rapidly IC progresses or reach severe/end stage ?. Is it like IBS, PFD or other risk factors
            2. What all can be done to accurately assess & treat pubic/bladder muscles weakness or tension ?
            3. On the medication side, what all should be taken (short term & long term) ?( as elmiron causes hair loss & with muscle relaxant I get more incontinence
            4. What rest can be taken/done like flotrol, prelief, probiotics ( which brand is good ) ?
            5. Can IC patients build & maintain good health ?. If yes how, since they have to avoid foods & can't exercise

            Comment


            • #7
              Please respond to my last reply....PT/Urologist confusing

              Can somebody please respond to my queries in 'last post'...Thanks

              Comment


              • #8
                I'll try to answer your questions.

                1. What al decides how rapidly IC progresses or reach severe/end stage ?. Is it like IBS, PFD or other risk factors

                IC PROGRESSES IN ONLY A VERY SMALL PERCENTAGE OF PATIENTS. MOST WILL REMAIN ABOUT THE SAME, EVEN THOUGH SYMPTOMS MAY VARY AT TIMES. MY IC WAS DIAGNOSED 36 YEARS AGO AND HAS NOT PROGRESSED. IN FACT, I BELIEVE I AM BETTER THAN AT DIAGNOSIS BECAUSE I HAVE LEARNED WHICH TREATMENT OPTIONS WORK BEST FOR ME AND WHICH FOODS AND DRINKS I NEED TO AVOID.

                2. What all can be done to accurately assess & treat pubic/bladder muscles weakness or tension ?

                IF PELVIC FLOOR DYSFUNCTION IS AN ISSUE, PHYSICAL THERAPY MAY HELP. I DO NOT HAVE PFD.

                3. On the medication side, what all should be taken (short term & long term) ?( as elmiron causes hair loss & with muscle relaxant I get more incontinence

                I HAD SIDE EFFECTS FROM ELMIRON SO CAN'T TAKE IT. THERE ARE MANY DIFFERENT MEDICATION OPTIONS AVAILABLE --- UNFORTUNATELY, WE CAN BE SO VERY DIFFERENT AND DIFFERENT MEDICATIONS HELP. FOR ME, LEVSIN HELPS, BUT IT DOESN'T WORK FOR EVERYONE.

                4. What rest can be taken/done like flotrol, prelief, probiotics ( which brand is good ) ?

                I USE PRELIEF, BUT DON'T TAKE PROBIOTICS.

                5. Can IC patients build & maintain good health ?. If yes how, since they have to avoid foods & can't exercise

                IT'S VERY POSSIBLE TO EAT A HEALTHY DIET WITH IC. EVEN AFTER 36 YEARS I STILL CONSULT THE FOOD LIST WHEN SHOPPING FOR FOODS. AND I CAN WALK, WHICH IS A VERY HEALTHY EXERCISE --- IN SUMMER I ALSO SWIM. 30 TO 45 MINUTES ON A TREADMILL DAILY IS EXCELLENT EXERCISE FOR ME ON RAINY OR COLD DAYS.

                THE ONLY "TEA" I DRINK IS NOT REALLY TEA, BUT HERBALS. I HAVE FOUND I CAN HAVE ONE CUP OF LOW ACID COFFEE IN THE MORNING, BUT I DIDN'T TRY IT FOR A LONG TIME.

                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 a lot....Just a question on instills etc

                  His pelivic floor has really gone too weak, inflammed I think, upto a level that now he can't sit even for few minutes, without contracting whole pelvic floor. Doing that is making all his bladder symptoms/weakness worse. If diet control is not helping him (as for last 1 1/2 yrs he didn't managed IC/PFD at all) and he needs immediate relief, can instills or hydrodistention help ?. In what scenarios usually instills are needed. Is there any sort of side effects or complications

                  Also any other oral thing that he can try to get at least immediate relief ?. Is it that if your bladder wounds are too chronic/untreated, diet can't help much ?

                  Also I am wondering if his IBS or skin issue (has a sort of recurring deep/intense skin itch around genitals (nothing superficially though).

                  Comment


                  • #10
                    Thanks a lot for all your help - Just my last doubt

                    Thanks a lot for all your help. Can someone tell me if IBS or this itch can cause all flares, though now he is doing diet control ?

                    Thanks

                    Comment

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