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  • Instillations not working ?

    I had my second instillation two days ago. It seems my pain is worse after the instillation. After the first instillation two weeks ago I was in the worst flareup I’ve ever been in to where I couldn’t even walk because the urethral pain was so bad for almost a week. I saw my primary doc he tested for a UTI and I was clear. he gave me pyridium and it helped tremendously. Saw my Urologist the next week and they did another instillation and again I’m worse, the urethral pain. Not as bad as the first instillation but I feel like it didn’t help at all except for the day of the procedure. Then it’s back to the pain where it’s so bad that I sometimes can’t even sit down especially at work. I’m starting to feel like I don’t have IC and I’m scared. Has anyone else ever had this experience?

  • #2
    Re: Instillations not working ?

    Do you know what was in the solution instilled? Could you taste it? If it was DMSO, that can be painful. Some years ago I had a series of DMSO instillations and the first few were very painful --- I was ready to say no more when I woke up one morning and realized I had slept through the night. It did help me for quite a while. If it was DMSO and if you decide to continue with the series, I suggest you make sure the amount of DMSO in the solution is no more than 25% --- the brand name is Rimso 50, which is 50% DMSO, so it needs to be further diluted.

    HOWEVER, DMSO isn't being used much any more --- there are other solutions that can actually be soothing. Some include heparin, some have Lidocaine or Marcaine --- there are different combinations. I suggest you have a look at the American Urology Association Guidelines for Treatment at the link in my signature below. There may be some treatment options listed there that you would like to discuss with your doctor.

    Sending well wishes,
    Donna
    Stay safe


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    • #3
      Re: Instillations not working ?

      As Donna said there are many different types of instils to try so definitely talk to your doctor about your options.
      And also, i found that it had hurt my urethra so then they started to put lidocaine on the tube and it helped immensely.
      So there are other things to consider.
      Definitely have a good talk with your doctor about different instil options and also putting lidocaine on the tube.
      Have dealt with chronic pain and gerd/ibs since '98 endometriosis, vulvodynia diagnosed 2000, ic diagnosed around 2004, chronic epstein barr-like virus 2011
      Hysterectomy/oophorectomy 2014 endo had destroyed everything
      Now dealing with recurrence and menopause in late 30s
      Other things--migraines, chronic hives, eczema, raynauds, congenital scoliosis, broke 3 vertebrae in middle of back when i was 16, heart defect (ventrical septal defect)

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      • #4
        Re: Instillations not working ?

        I have Urethritis so any instill would cause much more pain than benefit. If the meds are not helping your bladder maybe you would be better of taking the meds orally? Definitely talk to you doctor about options.

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        • #5
          Re: Instillations not working ?

          For urethral issues, ask your doctor about lidocaine.
          I have always had urethral involvement (always felt like a knife was slicing it) with the pain of Ic and i found lidocaine helps a lot.
          When i had instils, i definitely had problems with it but having lidocaine on the catheter and also lidocaine at home, really helped me out.
          When the doc had said hey we should try instils, i was horrified since i knew how bad my urethra felt anyway but i am glad he had suggested to have lidocaine on the catheter and it actually was part of my treatment and also i would put it on when i got home and a couple of days after.
          It helped/helps a lot.
          Something to consider.
          And also there are instils with marcaine and numbing type solutions that will definitely help with that kind of thing as well.
          Something to look into and try and if it is just a pain, look into other oral medicines that can help. And also pelvic floor therapies since that might help you as well. Some people have both pelvic floor involvement and bladder wall involvement so lots of things to consider.
          Hope you have a good talk with your doc and hope you find something to try and that it helps.
          Take care everyone
          Have dealt with chronic pain and gerd/ibs since '98 endometriosis, vulvodynia diagnosed 2000, ic diagnosed around 2004, chronic epstein barr-like virus 2011
          Hysterectomy/oophorectomy 2014 endo had destroyed everything
          Now dealing with recurrence and menopause in late 30s
          Other things--migraines, chronic hives, eczema, raynauds, congenital scoliosis, broke 3 vertebrae in middle of back when i was 16, heart defect (ventrical septal defect)

          Comment


          • #6
            Re: Instillations not working ?

            I did physical therapy for 3 months once a week, it helped ALOT at first and then this flare happened about a month ago and it stopped giving me relief. Ive had 2 instillations and tried pyridium and uribel . Both which gave me relief for a short time but right now nothing works. I’m seeing the doctor again on weds so I’m hoping I can explain things to her sometimes it’s difficult communicating .

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            • #7
              Re: Instillations not working ?

              Definitely take the concerns you have on paper then you will remember what you need to say.
              Tell your doc exactly what you are feeling and what your concerns are.
              There are a lot of medicines, herbs, instils that you can try so just remember that.
              Have you made sure you don't have an infection?
              Whenever i flare, i make sure its not an infection of bacterial or yeast then i take all my rescue meds (if negative) and double down on the diet.
              Also you can look into anti-histamines, whether you go with hydroxyzine or something over the counter.
              Over active bladder meds helped me in the beginning, i used to love ditropan, it felt like it numbed the area as well as calm things down so then i could properly flush out the bladder by drinking lots of water.
              Definitely consider taking notes to the doc so then you remember what you need to say and also look up some treatments you haven't tried and talk with your doctor about the possibility about any treatment you are interested in.
              And definitely consider the rescue instils with marcaine or numbing solution.
              And also ask about lidocaine (i used xylocaine gel, they are all sorta they same thing, numbing stuff) i put it right on the urethra, it does burn a bit at first but then its the sweet numbing and i can sleep the night.
              So there are things to look into and consider, just whatever you feel comfortable doing, if you don't want to try instils again and maybe just revisit them at a later date, thats all good as well.
              So many medicines to use and also herbs to talk about as well.
              But always talk to your doc about them. I used to love cysta q, myself. And i take glucosamine off and on, right now i take hyaluronic acid, which seems good.
              Also i get gotu kola (it helps heal the bladder and helps the mind as well) i just put a capsule in water and drink it (it doesn't taste that good but that way gets right in the bladder) i take one capsule and maybe another one later on, does cause a bit of a headache but helps the bladder so much.
              Always talk to your doc about adding things though, can't stress that enough.
              Well hope this gives you some ideas and helped you a bit.
              Keep posting so we know how you are doing.
              Take care
              Have dealt with chronic pain and gerd/ibs since '98 endometriosis, vulvodynia diagnosed 2000, ic diagnosed around 2004, chronic epstein barr-like virus 2011
              Hysterectomy/oophorectomy 2014 endo had destroyed everything
              Now dealing with recurrence and menopause in late 30s
              Other things--migraines, chronic hives, eczema, raynauds, congenital scoliosis, broke 3 vertebrae in middle of back when i was 16, heart defect (ventrical septal defect)

              Comment


              • #8
                Re: Instillations not working ?

                Wow! Thank you so much!! You made my day! I will post after I see my doctor on weds. I just started taking the desert harvest aloe I’m hoping that will help me. Thank you to everyone who has posted to my thread. This support is priceless to me.

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                • #9
                  Re: Instillations not working ?

                  Welcome to the forum and I am happy you have found some support. Keep posting.
                  TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                  My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                  Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                  Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                  I post to encourage and offer total support for rescue instillations.
                  Find me on facebook: L. Clark Thomas
                  Louann

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                  • #10
                    Re: Instillations not working ?

                    Your welcome
                    Just remember its your health, if you are not happy with a treatment, you can stop it (or wean off of it depending on what it is, with some stuff definitely talk to the doc about stopping things)
                    And go with something you are comfortable trying next.
                    You can always revisit medicines since the body does change, sometimes something doesn't work then a few years down the road, it does.
                    But it is your body, your health.
                    Read up on any type of treatment you feel comfortable with and have a list of medicines and talk to the doc about those possibilities.
                    I do hope you find something that helps.
                    We are all in this together and we try to help each other along the way.
                    Take great care and keep us posted.
                    Have dealt with chronic pain and gerd/ibs since '98 endometriosis, vulvodynia diagnosed 2000, ic diagnosed around 2004, chronic epstein barr-like virus 2011
                    Hysterectomy/oophorectomy 2014 endo had destroyed everything
                    Now dealing with recurrence and menopause in late 30s
                    Other things--migraines, chronic hives, eczema, raynauds, congenital scoliosis, broke 3 vertebrae in middle of back when i was 16, heart defect (ventrical septal defect)

                    Comment

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