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  1. #1
    ICN Member
    Join Date
    Jul 2017
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    4

    First Instillation Experience - just felt like sharing!

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    20yo, been having symptoms for about 4 years but got diagnosed only recently.


    Just had my first instillation this week! It brought me about 3 days of relief from a flare I'd been having for 5-6weeks now. Doesn't sound like much, but I was pretty happy about it -- tbh pretty great being able to go to the bathroom without having to think about if like a little glimmer of hope that things can get better for me And I was surprised that it took effect so soon, even if it didnt last!

    It was pretty uncomfortable and painful, but it was ~borderline~ bearable since they numbed it a little, and it subsided pretty much as soon as the catheter was removed.



    Soo yeah, that's my experience so far. Hopefully things will start improving with more treatments (I have them lined up weekly for the next 6 weeks), and I also just started Elmiron.




    If anyone feels like sharing their own experiences, please do! Success stories, drawbacks/side effects, etc?

  2. #2
    ICN Staff ICNDonna's Avatar
    Join Date
    Mar 2000
    Location
    Oregon
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    41,681

    Re: First Instillation Experience - just felt like sharing!

    Thank you for sharing your experience. Do you know what was in the solution instilled?

    There are some ICers who do instillations at home --- if they continue to help, you might want to consider that as an option.

    Warm hugs,
    Donna
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    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.
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    Anyone who says something is foolproof hasn't met a determined fool

  3. #3
    ICN Member
    Join Date
    Jul 2017
    Posts
    4

    Re: First Instillation Experience - just felt like sharing!

    I believe it was heparin, sodium bicarbonate, and Marcaine. Wow I didn't know you could do it yourself! I don't know if I'm brave enough to try inserting my own catheter just yet, but we'll see down the road haha

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