Announcement

Collapse
No announcement yet.

Question???

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Question???

    I have urodynamics testing coming up on Thursday. I have no idea what to expect. Are there different types of tests? What have I gotten myself into? Any help would truly be appreciated!!
    Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
    Lexapro-20 mg
    Aciphex
    Ambien-as needed
    Percocet-7.5 up to 3 per day as needed
    Valium-10 mg x2 per day
    Phenergan-1 at night
    Prelief w/everything
    Now recovering from acute pancreatitis

    Currents treatments that help somewhat:
    Heating pad
    Hot baths
    Ice
    Being VERY still while lying down with legs elevated

  • #2
    Ok!!

    I'm sure that SOMEBODY here has had some sort of urodynamics testing. I'm just asking for basic information and I would truly truly appreciate any help anybody can give me!! I'm starting to panic!!!!!
    Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
    Lexapro-20 mg
    Aciphex
    Ambien-as needed
    Percocet-7.5 up to 3 per day as needed
    Valium-10 mg x2 per day
    Phenergan-1 at night
    Prelief w/everything
    Now recovering from acute pancreatitis

    Currents treatments that help somewhat:
    Heating pad
    Hot baths
    Ice
    Being VERY still while lying down with legs elevated

    Comment


    • #3
      re urodynamics

      my dr does this in his office i havent had it done before or yet.. but heres some info i found on it http://kidney.niddk.nih.gov/kudiseases/pubs/urodynamic/
      dont panic hun it doesnt look that bad.. but who knows.
      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


      • #4
        I had part of the test done

        Originally posted by KatieB View Post
        I'm sure that SOMEBODY here has had some sort of urodynamics testing. I'm just asking for basic information and I would truly truly appreciate any help anybody can give me!! I'm starting to panic!!!!!
        Hey Katie,
        After looking at the link Angela left, I thought wow, I had that test but didn't know what it was called. Do you know what parts of the test you're having done? I had the uroflowmetry test done and post voiding measurement done. I did not have the cystometry or the electromyography done so maybe someone else can give info.

        The uroflowmetry was no big deal. They told me to come with a full bladder, they left the room an I sat on this toilet like contraption hooked up to a computer screen and emptied my bladder. Afterwards, they took a catheter to see how much was left in my bladder.
        Looks like the cystometry is just one more part of the test where they fill your bladder with warm water, kind of like a cystoscopy but with an electrode in your bladder.

        I think its good your having it done if it will rule out something they are wondering about. Did they tell you why they want to do it? Good luck!
        Cindi


        Gelnique for frequency/urgency - works great
        Macrobid after sex
        Prilosec, continuous birth control pills
        synthroid .088mg, mucinex-d, restasis

        Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

        Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

        IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
        AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
        AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
        Great treatment flowchart on page 19 of the pdf

        Comment


        • #5
          im glad cm was able to provide some more info good luck katie will pray for you.
          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


          • #6
            Hi I have had the whole shebang in the hospital.

            To be honest it was not too bad, not nice but not too bad, I had one nurse? doing the whole procedure, it took about an hour, I first did the pee in the contraption, that measures, flow, time, pressure. then had cath to measure residual urine, then they filled my bladder very slowly with a very small cath till I said I really needed to go, while filling she would stop in intervals and get me to cough, and push, I think checking for stress incontinence. I think when this was done they filled my bladder again and got me to pee just reg and them measured amount left in my bladder again.

            They may have done more things I just can't remember right now, it is not painful, they stop if you are in pain. It is just uncomfortable to be cathed a few times and have probs put into your vagina, bladder and rectum.

            It gave the uro a lot of info, she didn't believe that I had retention as bad as I did but afterwards she didn't question it again. She now knows I have it. It told her what muscles work and don't work.

            I felt it was well worth the discomfort, for the info they got from it.

            It took me 4 1/2 mins to pee 300cc, should take no more than 30 secs to do this, I am always left with at least 300cc in my bladder after peeing, and my bladder is streached out so much it can't contract properly, and can hold more than 800cc's at a time.

            Just relaxe go with the flow and see what happens.

            Let us know how it goes for you.

            MG
            My are with you all. May you all find a way to peace and joy in your lives.

            Comment


            • #7
              Katie, I have had this test. It was mildly uncomfortable but really not bad at all. I had to change into a gown, was brought into an xray room, was cathed by a nurse & hooked up with leads on the outside. The nurse moved the table to a standing position & placed a funnel like device between my legs. A radiologist, urologist, & xray tech then came into the room. Xray contrast (dye) was then run into my bladder while the radiologist watched my bladder on a fluoroscope (live xray), & the urologist monitored my bladder control on his own machine. I had to bear down & cough for the urologist when told to & had to tell them when I couldn't "hold" my urine any longer. I then had to urinate into the funnel. This was difficult to do standing up while they were all in the room. But everyone was very nice & very respectful of me. The only discomfort I had was controlling the strong urge to go. (This was before I was on amitriptyline & my symptoms were well controlled) I had no side effects or problems afterwards. Good luck & try not to worry. Also I joked around a little with everyone & that helped too.

              Comment


              • #8
                Ok here's what happened

                I went for the appt, the np did NOT "finesse the cath in, OUCH. Pulled out (what I consider a lot of pee, considering I had just peed) and then said "OH I can't do this!! You have a BLADDER INFECTION. Are you kidding me?!?! I always THINK I have a bladder infection, but can't remember the last time I actually had one!!! So, now that I've panicked all week about this stupid test and had my husband drive me an hour away to get it done (God, i LOVE him) and they couldn't do it and I have to go back 2 weeks from today to try again. So macrobid, here I come.

                Thanks to everyone for all the support.
                Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
                Lexapro-20 mg
                Aciphex
                Ambien-as needed
                Percocet-7.5 up to 3 per day as needed
                Valium-10 mg x2 per day
                Phenergan-1 at night
                Prelief w/everything
                Now recovering from acute pancreatitis

                Currents treatments that help somewhat:
                Heating pad
                Hot baths
                Ice
                Being VERY still while lying down with legs elevated

                Comment


                • #9
                  Katie, what a bummer!!!!!!!! Wow and it was so far away. Did you have any idea you had a bladder infection? How could she tell? Did she do the dip test or something? You said last weekend was bad, do you think you had it then? Did you get my pm this week? Hope I got the username right.
                  Cindi


                  Gelnique for frequency/urgency - works great
                  Macrobid after sex
                  Prilosec, continuous birth control pills
                  synthroid .088mg, mucinex-d, restasis

                  Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                  Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                  IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                  AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                  AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                  Great treatment flowchart on page 19 of the pdf

                  Comment


                  • #10
                    Originally posted by cmclien View Post
                    Katie, what a bummer!!!!!!!! Wow and it was so far away. Did you have any idea you had a bladder infection? How could she tell? Did she do the dip test or something? You said last weekend was bad, do you think you had it then? Did you get my pm this week? Hope I got the username right.
                    Cindi, I ALWAYS hurt like I have a bladder infection, but like I said I can't really remember the last time I really did!!! It is truly a bummer!!

                    And thank you for the pm, lol, I DID get it and am going to look into nori!!

                    Are you still doing good with it??
                    Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
                    Lexapro-20 mg
                    Aciphex
                    Ambien-as needed
                    Percocet-7.5 up to 3 per day as needed
                    Valium-10 mg x2 per day
                    Phenergan-1 at night
                    Prelief w/everything
                    Now recovering from acute pancreatitis

                    Currents treatments that help somewhat:
                    Heating pad
                    Hot baths
                    Ice
                    Being VERY still while lying down with legs elevated

                    Comment


                    • #11
                      I'm so sorry you are always in that much pain. The pain of a UTI is truly excruciating to me so I can only imagine how you feel.

                      I'm still doing good but think I need to bump up the dose (I'm only taking 10mg). I read you can bump it up after a week. Its definitely helped my bursitis and my tmj lol but in order for it to help my frequency I think its not a high enough dose yet. I took a vesicare yesterday to get rid of the frequency which always really works well for me. I'd take it every day if it just didn't dry my eyes out so badly. The nori (and others) are supposed to also be anticholinergenics so it should kinda do the same thing as the vesicare if the dose is right. I'll keep you posted this next week.
                      Cindi


                      Gelnique for frequency/urgency - works great
                      Macrobid after sex
                      Prilosec, continuous birth control pills
                      synthroid .088mg, mucinex-d, restasis

                      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                      IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                      AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                      AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                      Great treatment flowchart on page 19 of the pdf

                      Comment


                      • #12
                        ahh.i cant believe that. maybe you will get a different nurse next time cuz i hate when they arent gentle when inserting anything..caths,etc.i found out i have a uti this week too so youre not alone.i am on cipro.hope it works considering my prior antibiotic resistance.good luck w/ the test next time.
                        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
                          Katie,
                          Don't feel bad that you didn't know you had in infection. I am the same way, I hurt ALL the time and can't tell when I have an infection either. I have been told that when we have infections they don't feel like other people's and I believe that. Hang in there, I hope you feel better soon.
                          Sandra
                          Link to the patient information, everything from What is IC? to Disability
                          http://www.ic-network.com/patientlinks.html

                          American Urological Association Clinical Guideline
                          Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
                          http://www.auanet.org/content/guidel...ent_ic-bps.pdf

                          Comment

                          Working...
                          X