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Is Bladder Instillation Effective???

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  • Is Bladder Instillation Effective???

    Hi everyone,

    I'm 23 years old and I've been diagnosed with IC for 5 months now. I'm certain I'm the bladder wall subtype because I had multiple UTIs that led to my IC. My gynecologist performed a cystoscopy and saw that there was scarring in my bladder wall.

    I've tried almost all the oral medications e.g. Zyrtec, amitriptyline, flavoxate, and Elmiron to calm my bladder. I didn't feel much effect with Elmiron, and I only took it for 2 months because I had a retinal hole procedure in my eye earlier this year and i found out about Elmiron's detrimental effects to the retina thanks to my ophthalmologist. While flavoxate helped with calming my bladder, it's not a long-term solution so I decided to stop all forms of oral medication. Every now and then, I will take the desert aloe vera supplements, but it doesn't stop the IC flares.

    My gynecologist told me the only solution left is the bladder instillation, which i am pretty scared about. I want to know if it's a painful procedure and if anyone experienced any short or long-term side effects from it? I read from this website that the instillations can help with the bladder wall subtype, but i'm not sure if it's worth the risk and pain or if my bladder will heal on its own? My gynecologist said it's possible for the bladder walls to heal on their own, except it'll take a long time. I'd really appreciate it if anyone found remission from going through the instillations. The instillation solution that my doctor recommended to perform contains rimso-50 50%, heparine, and lidocaine. It also costs over $700 for me since my insurance doesn't cover it, so i'll have to pay upfront for each instillation. Once again, i'm not sure if it is worth dropping thousands of dollars for.

    Looking forward to hearing your bladder instillation experiences (esp for those with bladder wall subtype). Thank you!

  • #2
    First of all, I'd like to say to the IC Network. I'm glad you found us.

    There are different mixtures that can be included in bladder instillation --- DMSO (Rimso-50) helps some ICers, but can be painful --- I suggest you talk with your doctor about using a mixture that doesn't contain it. Have you tried an IC diet? If not, I suggest you begin today. The diet list isn't 100%, but is a good starting place --- and if you keep a diary for a while, you can develop your own diet list. You might also want to try a smooth muscle antispasmodic to see if that helps.

    It can take time to find which treatment options work best and to identify your triggers, but most of us do --- an most of us feel good most of the time.

    Sending well wishes,
    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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    • #3
      Hi when I was first diagnosed back in 2008 my Dr. gave me instills as first treatment of just Heparin 10,000 units every day and had hydrodystension (sp?). I am now prescribed 40,000 units (4ml) heparin, 3ml sodium bicarbonate and Lidocaine 1% (20ml) you can also get 2% licocaine (10ml). I have also read that DMSO is an old treatment and can hurt; a lot of people are on the combination I am. I am pretty sure the Heparin is to help the bladder wall, the sodium bicarbonate is for Ph balance and the lidocaine is for pain. So when I'm not in pain I would only use the sodium bicarbonate and heparin. At one point sodium bicarbonate was not available so I was only doing the heparin. There a lots of combos. Is the DMSO what is costing the most, if so i would ask your Dr. if you could do just heparin if in no pain, if in pain add lidocaine and as an extra add the sodium bicarbonate. I have insurance but not sure if these drugs are covered the heparin cost me $10 for 8 vials of 40,000 units.
      Diagnosed with IC sept. 2008, treatment then was hydrodistension, heparin instills for about 4 months and IC diet; symptoms lasted until sept 2009. Then only a couple of relapses overworking, stress etc. Then completely in remission until Jan. 2016 now pretty much symptom free as of mid august 2016.

      Symptoms: overall body aches, dryness feeling at vaginal opening, sitting makes it worse, standing makes it worse, stress makes it worse, no frequency or urgency, worse symptom is at night with panging of uretha/bladder.

      - went on diet, started Cysto Renew 3/31/16 and yoga at least twice a week.
      - tried uribel but really not for my symptoms since it seems it is for frequency and painful urination which I don't have
      - Ativan when needed to relax.
      - Elmiron only took for a couple of days; didn't like it
      - took atarax 1/2 10mg atarax pill at night really helped but gave me nightmares
      - tramadol worked great for back aches
      - generic claritin D worked best for me for calming bladder down and my panging
      - still taking cysto renew 4x a day and believe this and diet helped the most.
      - took dosage of cysto renew down to 2x a day and still ok

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