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  • Sandpaper bladder

    Ever since I started experiencing bladder symptoms, they've always been limited to severe frequency/urgency (which is QUITE enough, thankyou ) without pain. The Desmopressin has been helping me to sleep 4-5 hours at a time at night without having to get up, which has been a godsend really. There are still nights when I have flares, but those have gotten to be fewer. I still sleep with an ice cube wrapped in a towel between my legs every night.

    However, during the last few days right at the very end of every time I urinate, it feels like my bladder is about to fall out. It feels like my bladder/urethra are lined in sandpaper, and the burning lasts for about 20 minutes at the most. This happens even with my steady flow of Pyridium and using Lidocaine in my urethra. I've never had pain as a part of my urinary issues, even when I've had a UTI, so this is brand new. Drinking baking soda/water and milk seems to help a little bit, but only until it's passed though my system.

    I'm really scared that this is the beginning of a new, awful, long-term symptom for me. What could've caused this sandpaper feeling? Nothing in my diet or meds has changed and it only started a few days ago.

    I've been afraid that I'm just biding my time until the pain of IC starts too, in addition to my other symptoms. I'm trying not to let myself believe this too much, but these new symptoms are scary.
    28 y/o female

    [SIZE="2"]
    Bladder Symptoms:
    Severe urinary urgency/frequency with no bladder pain; severe urethral spasms (3x 'normal' pressure). Symptoms began in 2009.

    Failed medications:
    Ditropan XL (severe retention); Hyoscyamine (made bladder spasms worse); Marshmallow Root; D-mannose; Pristiq; Cymbalta; Lyrica; Nortryptaline; Prelief; Enablex; Baclofen; Ativan; Myrbetriq, Valium Vaginal Suppositories; Amitryptaline; Hydroxyzine

    Failed treatments:
    IC Diet (diet does not trigger or improve symptoms); Hydrodistentions (x2); Bladder instillations (made frequency worse); Heating pad (makes frequency worse); Surgical removal of adhesions on bladder

  • #2
    Hi, hkh5 ~ Wow from reading your signature you sure have been through a lot. Since I'm not familiar with most of what you've experienced the only thing I might offer is to see your doctor for a possible UTI.

    Prayers that you receive some help/relief soon. Please keep us posted.
    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

    11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
    8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
    8/2010 Surg gallbladder
    TREATMENTS (updated 4/15)
    IC Diet since 8/2009 (Able to vary 4/15)
    Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
    Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
    Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
    *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
    Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
    PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

    Comment


    • #3
      Thank you! I still feel like I have sandpaper for a bladder lining...it's not good. I don't for the life of me know what is causing it. I'm still very afraid it's the start of a long dark painful road ahead...the website of my new urologist claims that IC is a progressive disease. I've read in other places that it isn't, but that it can be for some people. I sure hope I'm not one of those lucky few.
      28 y/o female

      [SIZE="2"]
      Bladder Symptoms:
      Severe urinary urgency/frequency with no bladder pain; severe urethral spasms (3x 'normal' pressure). Symptoms began in 2009.

      Failed medications:
      Ditropan XL (severe retention); Hyoscyamine (made bladder spasms worse); Marshmallow Root; D-mannose; Pristiq; Cymbalta; Lyrica; Nortryptaline; Prelief; Enablex; Baclofen; Ativan; Myrbetriq, Valium Vaginal Suppositories; Amitryptaline; Hydroxyzine

      Failed treatments:
      IC Diet (diet does not trigger or improve symptoms); Hydrodistentions (x2); Bladder instillations (made frequency worse); Heating pad (makes frequency worse); Surgical removal of adhesions on bladder

      Comment


      • #4
        I agree that it sounds very much like you might have an infection. With IC it can be very difficult to tell. Please do have your urine checked.

        Only a very tiny percentage of IC patients find it progresses beyond the first couple of years when it's initially developing. My IC was diagnosed 36 years ago and I am much, much better than at diagnosis --- it took some time to find which treatment options work for me and which foods and drinks I need to avoid, but most of us do get there --- and most of us feel good most of the time.

        Sending encouraging hugs,
        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

        Comment

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