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My experiences -> looking for some advice

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  • My experiences -> looking for some advice

    Hi all,

    Glad I found this place!

    I'm a 34M who has dealt with IC for about 11 years. I've seen multiple urologists and pelvic floor physical therapists without any substantive relief. I've had a few different diagnosis - initially thought to be due to an enlarged prostate but that's not the case.

    Symptoms:

    For the last decade plus I've been dealing with a constant sense of pressure- think of the sensation of waiting to go too long to the bathroom coupled with a false sense of urgency - constantly needing to go to the bathroom but not needing to.

    Roughly two weeks ago I tried Ditropam 10mg then 15mg. The 15mg caused urinary retention which subsided when I stopped the Ditropam but I've had difficulty returning to baseline since then, particularly with difficult sleeping over the last few days.

    What I've tried

    *Various medications: Ditropam (caused urinary retention), Flomax
    *Various OTC pain meds: Ibuprofen, Tylenol
    *Cystoscopy with hydrodistention: found my bladder was less than half the normal size
    *DMSO catheter installations: made some difference but too painful
    *Low FODMAP diet: some mild improvement but mostly in the GI realm, difficulty to maintain
    *Pelvic Floor PT: No meaningful difference
    *Dry needling acupuncture: Some GI relief but not much in way of urology
    *Bladder neck surgery: Improved the stream somewhat but no symptom relief

    What I'm trying now

    *Medication: Was just prescribed 25mg hydroxyzine - trying it for the first time
    *Yoga: Tried for the first time yesterday
    *Pelvic floor stretches: Have been largely inconsistent, seeking to practice more regularly
    *Meditation: Also have practiced inconsistently

    I've looked through the IC diet. In the duration of my symptoms, I've avoided things like caffeine/alcohol or had them regularly and it doesn't seem to make a difference.

    I'm wondering, or hoping, that someone here has had similar experiences and a breakthrough. Curious what has worked for folks and what hasn't. Thanks for the time and thanks everyone for sharing their stories.


  • #2
    Hello Chridandy, although I have not been diagnosed with IC I have been treated for bladder cancer using BCG immunotherapy. It has given me chemical cystitis which has all the hallmarks of IC. I have had this now since last October. I have flare ups (going through one now) whereby I suffer very painful bladder spasms. I have great difficulty getting hold of any medication that can help. I have been on Solafenacin and just stopped Amitriptyline both of which seemed to cause urinary retention thus more pain.
    . I struggle to walk sometimes and even sitting can be so uncomfortable it really puts a blight on life. Any relief at times would be good.

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    • #3
      to both of you!

      Have you tried going on an IC diet? If not, I think that's a good beginning step.

      Another thing you might try is to keep a detailed diary, noting everything that goes in your mouth, urinary frequency, pain levels, activities --- to see if you can identify your personal triggers.

      Sending healing thoughts,
      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

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