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  • #1

    mucosa compositum

    Hi everyone,

    I tried bladder instillations about a year ago, as you can see in my signature. I decided I want to try them again, and my doctor suggested using different ingredients. So I had one on Friday, and have had relief from the terrible urgent feeling I usually get, and even a little less frequency. It's pretty miraculous since the old instills took a few times to kick in....before they stopped working entirely. So these new instills have sodium bicarb, marcaine, and something I've never heard of: mucosa compositum. I'm just wondering if anyone else has ever used that particular ingredient and if you've had success with it. I was told it was more "homeopathic" than other things used in bladder cocktails.
    ----------------------
    -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
    Tags: None
  • #2
    I have never heard of that ingredient but, hey if its getting you relief thats good news. I hope you continue to feel better each day keep us posted.
    <center>
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    Comment

    • #3
      That's a new one on me. Maybe someone else has had that in their instill and will post. I would be interested in knowing what it is and if it helped.
      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

      Comment

      • #4
        The only thing I've managed to learn is that it's often used with diseases that cause inflammation, so it's obvious why it would work for some IC patients. I've had my second one, and it was a little disappointed since I didn't respond as well. I know sometimes though that these things take several times, so I'm going to keep it up and try to keep everyone updated.
        ----------------------
        -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

        • #5
          An update and a question for you all....

          I've had 6 of these instills by now, each about a week to 10 days apart. At first, no problems. I was having some relief of frequency. I still am. I also am not constantly aware of my bladder. (Still am sometimes, but not nearly as much.) It's been so much easier to drive further than 30 minutes and not have to worry about finding somewhere to stop or wearing a pad.

          Anyway, my question is about leaking. The last 2 instills have leaked out of my bladder. Not all at once, slowly over the course of 20 minutes or so. I know that leaking/incontinence is not usually (or never?) a symptom of IC, so I'm a little concerned at this point. The first time, my NP said it wasn't a big deal, that maybe I was having spasming, or my urethra was irritated. I wasn't expecting it to happen again. The instill stayed in longer this time, but still. Anyone ever experience this, or have any theories as to why it happened? I'm going to see my doctor tomorrow, so hopefully she can shed some light on the matter, and ease my worries. Perhaps instillations are just never going to be the right treatment for me, no matter the ingredients.
          ----------------------
          -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

          • #6
            Originally posted by skybluesoul View Post
            An update and a question for you all....

            I've had 6 of these instills by now, each about a week to 10 days apart. At first, no problems. I was having some relief of frequency. I still am. I also am not constantly aware of my bladder. (Still am sometimes, but not nearly as much.) It's been so much easier to drive further than 30 minutes and not have to worry about finding somewhere to stop or wearing a pad.

            Anyway, my question is about leaking. The last 2 instills have leaked out of my bladder. Not all at once, slowly over the course of 20 minutes or so. I know that leaking/incontinence is not usually (or never?) a symptom of IC, so I'm a little concerned at this point. The first time, my NP said it wasn't a big deal, that maybe I was having spasming, or my urethra was irritated. I wasn't expecting it to happen again. The instill stayed in longer this time, but still. Anyone ever experience this, or have any theories as to why it happened? I'm going to see my doctor tomorrow, so hopefully she can shed some light on the matter, and ease my worries. Perhaps instillations are just never going to be the right treatment for me, no matter the ingredients.
            Hey skyblue, I was wondering if you're still having this problem, and anything your doctor has said about it?
            I know that after my cysto, I had a bit of leaking the first day, but it cleared up immediately. I haven't had this problem with my instills though.
            I hope everything is well for you!
            21 years old
            dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy

            ♥ looking for a way or medication to help stop spasms ♥

            Comment

            • #7
              I've still been leaking them out about 15 to 20 minutes after they're put in. Still, no one seems alarmed by this, and I don't leak other than that. I suppose I could ask them to clamp me and lie there for 20 minutes (which is how long they advise leaving it in), but I can usually retain them for that long anyway. I used to hold them in for longer, so perhaps maybe that has something to do with it?? The IC bladder is so mysterious.

              The instills continue to help me, so I'm very glad. I'm spacing them out about 2-3 weeks now with the goal to stop soon and see how lasting the good effects will be. The only time when sometimes my frequency kicks up is right before my period. And generally, when I flare, it will be over in a matter of a few hours, not days.
              ----------------------
              -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

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