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  • Pain after bladder instill

    Hi I have a question for my IC friends. I had a bladder instill today at my urologist office. The nurse catherized me and did a mixture of 1% lidocaine, 20,000 units of heparin, sodium bicarb and soluf-cortef. I was very nervous before hand but luckily the whole procedure wasn't that uncomfortable. Tonight I'm hurting pretty bad. I can't tell if its my urethra or bladder thats spasming and I'm having alot of urgency. Is this normal? I had the instill as a last resort since I've had a flare up for about 6 weeks. My urologist says I should have another instill again next week but if Im gonna feel again like I feel tonight, I'm not sure if I want to. Now I'm so bummed. My elimiron doesn't feel like its working anymore and I feel like I'm never gonna get relief. Any advice?? PLEASE
    Michelle Rodriguez
    Diagnosed with IC in 2008 by cystoscopy and biopsy
    Pelvic floor disfunction, Recurrent yeast infections and bacterio vaginosis. Diagnosed with overactive bladder January 2012
    Currently taking:
    Elmiron 200mg twice a day
    Rapaflo 8mg
    Zyrtec, prelief
    Uribel as needed
    Vesicare as needed
    Have tried:
    Xanax, vesicare
    Sanctura (gave me insomnia)
    Celexa, wellbutrin
    Prestique
    Cystoprotek
    Aloe Vera pills
    D-mannose
    Bladder instills

  • #2
    I'm sorry your having pain. My first one hurt to but with each consecutive one its just gotten better and better. I think its because IC is damaged bladder lining and the healing process takes time. As the lining has been healing the instillations have gotten better, and the little bit of pain at first is so worth a good night sleep or being able to sit through an entire movie without a break! So anyways... hope you have better luck next time, and less pain.
    Diagnosed April 2009 with stage IV endometriosis
    Hysterectomy 2009 - lost both ovaries to endo
    Dx with IC sept 6th, 2010

    Current Meds:
    Zyrtec
    Flonase
    Hydroxzine
    Albuterol
    Atrovent
    Tramadol
    Ranitidine
    Protonix
    Hyophen

    Comment


    • #3
      Thankyou Omaklackey. I really appreciate your support and advice. I will follow through with my next instill. I ordered some of that Desert Harvest Aloe Vera last night. Its had a lot of good reviews. Hoping it will help me.
      Michelle Rodriguez
      Diagnosed with IC in 2008 by cystoscopy and biopsy
      Pelvic floor disfunction, Recurrent yeast infections and bacterio vaginosis. Diagnosed with overactive bladder January 2012
      Currently taking:
      Elmiron 200mg twice a day
      Rapaflo 8mg
      Zyrtec, prelief
      Uribel as needed
      Vesicare as needed
      Have tried:
      Xanax, vesicare
      Sanctura (gave me insomnia)
      Celexa, wellbutrin
      Prestique
      Cystoprotek
      Aloe Vera pills
      D-mannose
      Bladder instills

      Comment


      • #4
        My instills hurt when I got them the first 3 times then it started to get better.. I had 5 then got my app. to have the cysto/hydro done.. I am feeling so much better..
        God brought me to it, He will bring me through it!!!

        Diagnosed 2003
        by cysto/hydro
        Elmiron took almost a year- made me sick, caused diarrhea
        Pyridium -Made me sick
        Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
        Tried DMSO instill- had 5 out of 6
        Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
        Cysto/hydro April 6th 2011-- on expansion only hold one cup
        IBS/ IC
        High blood pressure meds and Crestor
        Metformin (prediabetic)
        Sinequan (depression)

        Comment


        • #5
          I have had two done. The first I had a alergic reaction, (new nurse) and didnt notice i was alergic to Laytex and used a laytex cath... I thought I was going to die for like 3 days after.

          However the last time was done right, and I felt better til I had to go to the bathroom then it hurt for two hours until I took a tramadol and oxybutin. Then I was just numb the rest of the day. Now I have another one this thrusday... But i hear ya. It hurts. If you find any tricks let me know!


          Good luck with yours!
          ~Backwoods gurl
          22 year old Female just trying to feel a little "better" each day!
          Diaganosed with IC possibly in July 11-
          Actually diaganosed with it in September 11
          Frequency- 15-20x's a day
          Flares- More of a constant at this point but when not its normal to last 2-3 hours and maybe 7-8 times a day...
          Good days are short frequencys and maybe 3-5 flares- but rare.
          What im currently taking:
          ~
          Half of the normals what is below is current while I wait to start the LIRIS study! I hope and pray to God, that this may work. I want relief.
          elmiron 100mg 3x's a day
          Tramadol 4x's a day
          hydroxyzine- when needed to sleep
          Methenamine Hippurate 1gm 2x's a day( I keep getting infections so this is to help)
          Tri- Nessa Birth controll pills
          Pryidum three times a day for one or two days then not for 3 or 4 days at all.
          ~
          Strict IC diet... I am diet senitive.
          ~
          Heating pad/ blankets
          ~
          Hot baths... Normally every night and showers in am
          ~
          frozen peas for a ice pack - will be doing often cuz it helps!
          ~
          Having a supportive medical assistant/CNA/Restorative Aid For a mother really helps! and a supportive group of friends and family whom care!

          Comment


          • #6
            I have no advice for you, since I have no experience with this, but I wanted to give you big virtual hug. Hope you're feeling better soon!
            Not diagnosed yet

            More than a decade of 'bladder issues'
            Main symptoms: burning pain in urethra, urgency, frequency
            Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
            Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
            Starting physical therapy soon

            Getting married 7/7/2012

            Comment


            • #7
              It's not unusual to have some pain after the first few instillations. I know I did. After that, it wasn't bad --- I hope they help you.


              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


              • #8


                I have had four instills so far. The nurse said that afterwards I might feel pain or burning but she explained it was just a 'sore urethra'. I do have some pain, but it usually goes away with a hot pad. If you are having the need to go, urgency, frequently, etc. then try drinking a ton of water before flushing out the meds. As soon as I have an instill, my doctor hands me a water bottle to drink on the way home. I find that this helps prevent the 'gotta go, gotta go, gotta go right now' feeling.
                Cholecystectomy ~ April 2010
                Ulcers ~ June 2010
                IBS ~ September 2010
                Gastroparesis ~ February 2012
                IC ~ September 2011

                Treatments:
                Desipramine(2x daily)
                Elmiron(100mg 2x morning/night)
                Elmiron, Lidocain, Sodium Bicarb, Sterile Water Instill (Weekly)
                Uribel(2x daily or as needed)
                Enablex(1xbefore bed)

                Supplements:
                Liquid Vitamins
                MegaRed
                Prelief
                SlowFe

                Comment


                • #9
                  I normally keep it in for an hour to hour and half as doc sugguests. So i try to drink at least two full glasses, But man Oh man it still the urgency and feelling like im sitting on pins and needles. I had the cystoscopy on thursday and im finally starting to unswell, and didnt help i tried to run arrands today cuz man i just wanna cry... torture pain my back hurts where kidneys and ovaries are... Just now starting to bleed, and still flaring.... I hate this sooo bad i would love for the pain to stop... (
                  ~Backwoods gurl
                  22 year old Female just trying to feel a little "better" each day!
                  Diaganosed with IC possibly in July 11-
                  Actually diaganosed with it in September 11
                  Frequency- 15-20x's a day
                  Flares- More of a constant at this point but when not its normal to last 2-3 hours and maybe 7-8 times a day...
                  Good days are short frequencys and maybe 3-5 flares- but rare.
                  What im currently taking:
                  ~
                  Half of the normals what is below is current while I wait to start the LIRIS study! I hope and pray to God, that this may work. I want relief.
                  elmiron 100mg 3x's a day
                  Tramadol 4x's a day
                  hydroxyzine- when needed to sleep
                  Methenamine Hippurate 1gm 2x's a day( I keep getting infections so this is to help)
                  Tri- Nessa Birth controll pills
                  Pryidum three times a day for one or two days then not for 3 or 4 days at all.
                  ~
                  Strict IC diet... I am diet senitive.
                  ~
                  Heating pad/ blankets
                  ~
                  Hot baths... Normally every night and showers in am
                  ~
                  frozen peas for a ice pack - will be doing often cuz it helps!
                  ~
                  Having a supportive medical assistant/CNA/Restorative Aid For a mother really helps! and a supportive group of friends and family whom care!

                  Comment


                  • #10
                    These comments are just making me terrified for mine! I'm going to see if I can avoid it!
                    21, graduate & aspiring Quidditch player.



                    'Poss' diagnosed Nov 11.

                    Current management;

                    Lots of water,
                    Mefenamic Acid,
                    Codeine & Paracetamol,
                    Heat Pads,
                    Knitting.

                    Comment


                    • #11
                      Sawwie- if you've been diagnosed with IC I think you should try instills. I understand that everyone has a different reaction to the treatment, but if it works for you it is a godsend. I just got done with mine and already I feel as if I'm normal. To avoid burning when I void it, i drink water.
                      Cholecystectomy ~ April 2010
                      Ulcers ~ June 2010
                      IBS ~ September 2010
                      Gastroparesis ~ February 2012
                      IC ~ September 2011

                      Treatments:
                      Desipramine(2x daily)
                      Elmiron(100mg 2x morning/night)
                      Elmiron, Lidocain, Sodium Bicarb, Sterile Water Instill (Weekly)
                      Uribel(2x daily or as needed)
                      Enablex(1xbefore bed)

                      Supplements:
                      Liquid Vitamins
                      MegaRed
                      Prelief
                      SlowFe

                      Comment


                      • #12
                        I've had many instills and here is what worked for me to reduce the pain.
                        Take a Pyridium or Azo before you go to the Dr. office for the instill.
                        Drink 1 teaspoon of baking soda in 8 ounces of water as soon as you can after the instill. The baking soda will drastically cut down on any burning
                        or pain you may have. My instills included two capsules of Elmiron in them and I had to hold it in for 2 hours before peeing it out. That way the Elmiron had a good chance to start healing the bladder. Instills jump started my healing process and was worth a little discomfort overall.

                        Comment


                        • #13
                          yes Your case sounds like mine, I was diagnosed back in 2005, I was started on On Elmiron twice a day I was fine but then I started getting worse then my uro recommened the instillations once a week and I do notice that the day I do it I am a bit bothered and the next day to, so I find taking my xanax before instillations and then the next day to does help, and being extra good with my diet, and then two days in I feel great again, I also do yoga once a week only and I find that it is helping calming my nerves and mind. but never do active activity and instillations the same day its is too irritating on the bladder. I hope this helps..

                          Comment


                          • #14
                            good idea on the baking soda I will definitly try it, thanks and I take a xanax to to calm my nerves

                            Comment


                            • #15
                              I feel your pain, I hope you get better, look into the hormones levels in your BC , I was on birth control for a while and I was unable to tolerate it, for me it made my IC worse, good luck to u...

                              Comment

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