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  • #1

    Always feel an urge and nothing helps!

    Please, someone help me!!! I've been a member here quite a while but I'm still feeling awful. My biggest symptom??? ALWAYS FEEL LKE I HAVE TO PEE! I know most of you deal with it to and I'm sorry. No one should have to deal with this! What helps you individually? Here's what I've tried:
    Hydtoxyzine
    Ditropan
    Ativan
    Valium
    Sacral
    implant
    All bladder incontinence drugs
    Pelvic floor therapy for several months

    I'd try the diet but where in the world do I begin with that??? Is there stood book for the diet? Alternative Meds?

    Please. I cry all the time now. His thing is horrendous. I need help. Please. Thank you sO much!!!

    Nancy
    Nancy - newly remarried Sept 2011! Have 5 kids ages 7-22.

    Had a UTI in Oct 2009
    IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms

    Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe

    Diagnosed fibromyalgia/lyme disease in 1999
    Acid reflux since 1998

    Have tried the following therapies:
    pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
    Ativan-helps some
    Vicodin-some relief.
    ditropan-only caused fluid retention
    toviaz-same as abovee
    detrol-no relief
    hydroxyzine-get some relief but not for urgency
    valium-helps relax the muscles
    flexeril-same as the valium
    B&O suppositories-they help a little
    started estrogen cream
    starting effexor soon

    Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.

    current meds and treatment:
    nexium
    ativan
    valium suppositories
    hydroxyzine
    IC diet
    methenamine mandalate
    estrogen cream
    effexor
    B&O suppositories

    Had bladder instills but this made the urethra spasms much worse.

    Had hernia repair with fundoplication dec, 2011

    Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.

    Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.

    Husband is my biggest supporter. I need the urgency to go away. What helps??
    Tags: None
  • #2
    got to pee

    Do you mean urgency? I use Toviaz 8mg
    Blessings,
    Ruth

    Comment

    • #3
      Yeah. The same thing. I tried Tovias too. The constant urge to pee is the worst thing ever
      Nancy - newly remarried Sept 2011! Have 5 kids ages 7-22.

      Had a UTI in Oct 2009
      IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms

      Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe

      Diagnosed fibromyalgia/lyme disease in 1999
      Acid reflux since 1998

      Have tried the following therapies:
      pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
      Ativan-helps some
      Vicodin-some relief.
      ditropan-only caused fluid retention
      toviaz-same as abovee
      detrol-no relief
      hydroxyzine-get some relief but not for urgency
      valium-helps relax the muscles
      flexeril-same as the valium
      B&O suppositories-they help a little
      started estrogen cream
      starting effexor soon

      Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.

      current meds and treatment:
      nexium
      ativan
      valium suppositories
      hydroxyzine
      IC diet
      methenamine mandalate
      estrogen cream
      effexor
      B&O suppositories

      Had bladder instills but this made the urethra spasms much worse.

      Had hernia repair with fundoplication dec, 2011

      Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.

      Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.

      Husband is my biggest supporter. I need the urgency to go away. What helps??

      Comment

      • #4
        I have used pyridiom before and it just seemed to cause a lot of bladder retention. See? By can't these things just WORK for me??
        Nancy - newly remarried Sept 2011! Have 5 kids ages 7-22.

        Had a UTI in Oct 2009
        IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms

        Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe

        Diagnosed fibromyalgia/lyme disease in 1999
        Acid reflux since 1998

        Have tried the following therapies:
        pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
        Ativan-helps some
        Vicodin-some relief.
        ditropan-only caused fluid retention
        toviaz-same as abovee
        detrol-no relief
        hydroxyzine-get some relief but not for urgency
        valium-helps relax the muscles
        flexeril-same as the valium
        B&O suppositories-they help a little
        started estrogen cream
        starting effexor soon

        Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.

        current meds and treatment:
        nexium
        ativan
        valium suppositories
        hydroxyzine
        IC diet
        methenamine mandalate
        estrogen cream
        effexor
        B&O suppositories

        Had bladder instills but this made the urethra spasms much worse.

        Had hernia repair with fundoplication dec, 2011

        Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.

        Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.

        Husband is my biggest supporter. I need the urgency to go away. What helps??

        Comment

        • #5
          Always feel the urge

          Hi that's my biggest problem.

          The only thing that stops the urge for me is oxycodone, but because I don't want to take that forever, my doctor wants me to try botox. Have you tried strong pain medicine?

          Comment

          • #6
            If you haven't tried the diet, my best suggestion is to do so --- beginning today! You'll find the latest food list at the link in my signature below. Diet can be the most helpful thing you can do. I know if I ingest problem foods or drinks, I can know for sure that by the end of tomorrow I would be in a severe flare.

            Sending encouraging 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

            • #7
              Thanks guys. Man what an ugly disorder isn't it? Heres answers to your questions Briza:

              What are your symptoms and when did they first start? Oct 2009. Had a UTI so burning, urgency, lower bladder pressure, never felt like I empty my bladder. Have had these symptoms ever since.

              When were you diagnosed? March 2010

              Which procedures were used to help in your diagnosis? hydrodystention, urodynamics and a bladder scope

              Do you still have the interstim and how is it working for you? I still have it. Sometimes it help a little and other times it doesn't help at all.

              Have any of your past or current meds or treatments helped with your symptoms...what and how? The hydroxyzine did in the beginning but not now. Nothing else has helped

              Are you following the IC diet? If so, how strictly and for how long? I havent. I dont know where to begin on it!

              Any other medical or emotional health issues that may be contributing to your symptoms? Im stressed all the time.

              Any help and advice is great. I just ordered a couple books-IC survival guide and A Better Bladder.
              Nancy - newly remarried Sept 2011! Have 5 kids ages 7-22.

              Had a UTI in Oct 2009
              IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms

              Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe

              Diagnosed fibromyalgia/lyme disease in 1999
              Acid reflux since 1998

              Have tried the following therapies:
              pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
              Ativan-helps some
              Vicodin-some relief.
              ditropan-only caused fluid retention
              toviaz-same as abovee
              detrol-no relief
              hydroxyzine-get some relief but not for urgency
              valium-helps relax the muscles
              flexeril-same as the valium
              B&O suppositories-they help a little
              started estrogen cream
              starting effexor soon

              Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.

              current meds and treatment:
              nexium
              ativan
              valium suppositories
              hydroxyzine
              IC diet
              methenamine mandalate
              estrogen cream
              effexor
              B&O suppositories

              Had bladder instills but this made the urethra spasms much worse.

              Had hernia repair with fundoplication dec, 2011

              Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.

              Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.

              Husband is my biggest supporter. I need the urgency to go away. What helps??

              Comment

              • #8
                If pyridium didn't work right for you (me either -- I felt horrible on it!), you could try urelle or uribel. They're similar, and neither one caused me problems. They stain your urine blue/green instead of orange.
                ----------------------
                -Amanda
                34 years old, bladder symptoms all my life
                diagnosed with PFD and VV October 2009; IC May 2010

                Current meds:
                Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
                Other past treatments:
                IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
                Tried and didn't work:
                Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture

                Comment

                • #9
                  Hi!!!

                  The diet is very worth it I promise!

                  I had a hard time coping with it too... as I think we all do at the beginning!... but then I started to realize that what I COULD eat was actually a pleasant suprise, and sometimes I had to get a little creative. There are so many things you can eat, so just look at those for awhile and ignore the stuff you cant until you start to feel better.


                  The have to go all the time feeling was the worst one I had, it drove me mad! After I was on the diet for about 4 months it went away, that and being on elmiron as well

                  Now the only time I DO get that symptom back is when Im bad and I eat what I shouldnt!! Like last night when I gorged on strawberries!!! lol. Normally they dont bother me at all though-- but too many is just bad news ..lol... I even ate pineapple in a marshmellow salad the other day for thanksgiving! ... There clearly IS a reason for me to be peeing my face off today hahaha...

                  Anyways. Hang in there and please try the diet!

                  Jenn
                  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
                    urgency

                    Nal so did the Toviaz not work for you? Pyridium works well for me as well.
                    Blessings,
                    Ruth

                    Comment

                    • #11
                      No, it didn't really help. I'm still dealing
                      Nancy - newly remarried Sept 2011! Have 5 kids ages 7-22.

                      Had a UTI in Oct 2009
                      IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms

                      Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe

                      Diagnosed fibromyalgia/lyme disease in 1999
                      Acid reflux since 1998

                      Have tried the following therapies:
                      pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
                      Ativan-helps some
                      Vicodin-some relief.
                      ditropan-only caused fluid retention
                      toviaz-same as abovee
                      detrol-no relief
                      hydroxyzine-get some relief but not for urgency
                      valium-helps relax the muscles
                      flexeril-same as the valium
                      B&O suppositories-they help a little
                      started estrogen cream
                      starting effexor soon

                      Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.

                      current meds and treatment:
                      nexium
                      ativan
                      valium suppositories
                      hydroxyzine
                      IC diet
                      methenamine mandalate
                      estrogen cream
                      effexor
                      B&O suppositories

                      Had bladder instills but this made the urethra spasms much worse.

                      Had hernia repair with fundoplication dec, 2011

                      Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.

                      Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.

                      Husband is my biggest supporter. I need the urgency to go away. What helps??

                      Comment

                      • #12
                        So I printed off the quick reference to the diet. Thank you for the link btw!!! I think I mentioned I ordered a couple books...theIC survival guide and something called the Better Bladder Book I think? lol.


                        I see a new urologist next week. What information can I can give to share with him so that maybe we can get on the right track to something helping me?

                        Thanks again.

                        Nancy
                        Nancy - newly remarried Sept 2011! Have 5 kids ages 7-22.

                        Had a UTI in Oct 2009
                        IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms

                        Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe

                        Diagnosed fibromyalgia/lyme disease in 1999
                        Acid reflux since 1998

                        Have tried the following therapies:
                        pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
                        Ativan-helps some
                        Vicodin-some relief.
                        ditropan-only caused fluid retention
                        toviaz-same as abovee
                        detrol-no relief
                        hydroxyzine-get some relief but not for urgency
                        valium-helps relax the muscles
                        flexeril-same as the valium
                        B&O suppositories-they help a little
                        started estrogen cream
                        starting effexor soon

                        Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.

                        current meds and treatment:
                        nexium
                        ativan
                        valium suppositories
                        hydroxyzine
                        IC diet
                        methenamine mandalate
                        estrogen cream
                        effexor
                        B&O suppositories

                        Had bladder instills but this made the urethra spasms much worse.

                        Had hernia repair with fundoplication dec, 2011

                        Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.

                        Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.

                        Husband is my biggest supporter. I need the urgency to go away. What helps??

                        Comment

                        • #13
                          So I'm sitting here. Still dealing with a constant urge to have to pee. My sr is calling in some Valium suppositories? Do those help?
                          Nancy - newly remarried Sept 2011! Have 5 kids ages 7-22.

                          Had a UTI in Oct 2009
                          IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms

                          Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe

                          Diagnosed fibromyalgia/lyme disease in 1999
                          Acid reflux since 1998

                          Have tried the following therapies:
                          pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
                          Ativan-helps some
                          Vicodin-some relief.
                          ditropan-only caused fluid retention
                          toviaz-same as abovee
                          detrol-no relief
                          hydroxyzine-get some relief but not for urgency
                          valium-helps relax the muscles
                          flexeril-same as the valium
                          B&O suppositories-they help a little
                          started estrogen cream
                          starting effexor soon

                          Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.

                          current meds and treatment:
                          nexium
                          ativan
                          valium suppositories
                          hydroxyzine
                          IC diet
                          methenamine mandalate
                          estrogen cream
                          effexor
                          B&O suppositories

                          Had bladder instills but this made the urethra spasms much worse.

                          Had hernia repair with fundoplication dec, 2011

                          Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.

                          Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.

                          Husband is my biggest supporter. I need the urgency to go away. What helps??

                          Comment

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