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Thread: Emiron pain

  1. #1
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    Emiron pain

    Is it just me or does it hurt others who've had the Emiron instillation?
    Wasn't a very good experience & need to do this 2 more times? UGH

  2. #2
    ICN Member Snowden1's Avatar
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    I had the same experience. It may also be one of the other ingredients like sodium bicarb that is added to it. I won't do them anymore. Sorry you are having the same issue.
    Teresa

    We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

  3. #3
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    It may be the saline - good thought on this. Will mention to doc & try another just to make sure. Thank you - thought I was "weird" LOL

  4. #4
    Forum Manager ICNDonna's Avatar
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    Are they adding anything like lidocaine or marcaine? Just the catheter and liquid in the bladder can cause some temporary pain.

    Donna
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    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.

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  5. #5
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    Hello,
    They told me it was Emron (sp), lidocain & normal saline. It hurt most the day but today is somewhat better
    Think like you said just the cath alone can cause pain also. I appreciate everyones thoughts on this. Doc is considering some sort of pain block?
    Any thoughts on that?

  6. #6
    Forum Manager ICNDonna's Avatar
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    It's not unusual for instillations to take several before any real improvement is seen.

    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/patient-r...on/#icfoodlist

    You'll find my story at: http://www.ic-network.com/conditions...tories/page/6/

    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.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....

  7. #7
    ICN Member Snowden1's Avatar
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    What kind of pain block? Internal or external?
    Teresa

    We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

  8. #8
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    Hi there
    Not sure on what type - told me he would do a trial for a few days with it on me to see. I didn't know there were different types.

  9. #9
    ICN Member Snowden1's Avatar
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    I would ask. Just don't want you to be in more pain.
    Teresa

    We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

  10. #10
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    I asked today during my 2nd bladder lavage - was told "interstim".... will have to look it up. Good day today!

  11. #11
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    Wow! Started out feeling pretty good after my 2nd bladder lavage with elmiron then WHAM! It happened while voiding & it felt like something "popped" down low... immense pain & I couldn't void. Called doc who called in script (flavoxate), now much better but still irritated. Suppose to get 3rd lavage tomorrow but wonder if I should wait a few days to let bladder calm down. Does this ever end??

  12. #12
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    Elmiron Pain

    I had pain from Elmiron being instilled. Horrible pain. I couldn't continue after 3 of them. Then I had surgery to remove adhesion and cysto/hydrostention to look for IC. IC was confirmed, and adhesions removed. I was placed on Elmiron after surgery. Well I have been in dire pain (constant) for almost a year. I developed side effects from Elmiron. I stopped taking Elmiron and my pain level reduced. My body doesn't like Elmiron and it causes my pain to increase. I thought the hydrostention was causing me pain. Maybe the hydrostention helped, but the Elmiron masked the benefit. Why it helps some and hurts others is a good question. I read somewhere on this site it may be an issue with some individuals having an allergy to sulfur.
    Diagnosis: Endometriosis, IC, PID, PCS, PFD, PN/PNE, VV, fibro, Pelvic Adhesions, DDD, Hysterectomy at a young age. Unable to take estrogen, causes pain—extremely bad pain.

    Thankful: For all the support and comfort I receive on this site.

  13. #13
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    I believe someone mentioned the other additives in the cocktail as possible culprits.... something to consider. Sorry to hear you had the same issue - sometimes it's so discouraging but I thank God there is others on here to lift you up & encourage you! Thank you!
    I am looking into other options to the neuromodulation - there is sooo much info on this site it can be overwhelming - but I'm muddling thru for the best benefit for myself.

  14. #14
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    Elmiron Pain

    My new doctor said the pain from the instill could have been caused by the catheter size being to big. One size doesn't fit all. My pain was shooting and intense. I never been stabbed before, but it felt like I was being stabbed.

    I remember my first visit to this site. I was overwhelmed. Especially when I saw all the medications listed after each post. To be honest, this site scared me! I have really come to appreciate this site.

    I hope you start feeling better. My thoughts are with you.
    Diagnosis: Endometriosis, IC, PID, PCS, PFD, PN/PNE, VV, fibro, Pelvic Adhesions, DDD, Hysterectomy at a young age. Unable to take estrogen, causes pain—extremely bad pain.

    Thankful: For all the support and comfort I receive on this site.

  15. #15
    ICN Member Snowden1's Avatar
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    Thingone,
    So is the Elmiron helping you now? I am also scheduled for a laporoscopy in Dec to look for adhesions. What have you found helps you the most?
    Teresa

    We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

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