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TL;DR personal and embarrassing

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  • TL;DR personal and embarrassing

    This is an embarrassing subject. I wasn't officially diagnosed with IC but my urologist believes it, they did the potassium test and I had some pain to it, but it wasn't enough.. He wanted to get me tested at hospital where they do some procedure there and my health insurance denied it. I was prescribed emiron, but they wouldn't pay for it and I would have to pay like $800 which I don't have the money for.... I started the diet, nothing but rice and it improved somewhat, but the symptoms remained where I had to go to the bathroom a lot but it wasn't bad. He put me on some medicine for bladder like oxybutynin and it didn't help much... I am in a major flare right now, have been for the past 6 weeks. I had allergies few months ago, the doctor prescribed oral steroids prednisone, antibiotics, and another one and it put me on a major flare for 6 weeks with constant urge to go. I asked my urologist to see me, and there's a wait time due to covid, he wants to do injection of some kind of cocktail to see if it helps....

    I shopped around for alternatives, I found marshmellow root tea it soothes the bladder for couple of hours not much, and I found AZO which helps but it turns my urine different color which stains my clothes.. Sometimes, I can't even get a drip. I just called my neurologist because I have epilepsy to ask if I can take aloe vera from desert harvest and he said it's probably no issue. So, I finally ordered some from Amazon, let's see if it works.

    I feel embarrassed about this topic. I used to wet the bed between when I was a kid to 18 and I stopped when I was an adult. I used to wear 'adult briefs' but I just call them diapers for that is what they are. I did it because, I used to sweat a lot on plastic sheets. My mother recently reminded me of it, that was several years ago as I'm not even a kid anymore. She mentioned I should probably try to start wearing them... I started wearing different types and found the thick ones with tabs suits me better, and less worry of azo staining my clothes. I

    I pretty much started using it at night to 'wet' because I can't sleep, I had to get up like 15 times during the night where I can't sleep..... I pretty much started wearing them 24 7 and it gets annoying. It does feel really comfortable. It's nothing sexual, I thought about it.. It seems my boxers and jeans didn't help that much, boxers are polyester and seems cotton helps underwear and I started wearing sweatpants or whatever that was loose, it helped to reduce the sensitivity down there.

    I don't know what to do, how do I get out of this flare? It's constant, it's not going away and my urologist is two weeks away. How long does it take for aloe vera to kick in? I should get it monday. It's expensive, but compared to emiron it's cheap.

  • #2
    I know aloe vera works for many, but not for everybody. It came in today, I took it this afternoon, I don't notice anything.. How long does it take for it to work? I notice perhaps 1 to 2% improvement, not much, but any improvement is better than none increasing dosage from 3 in the morning to 4 in morning and 4 evening...
    Last edited by pepersauce; 12-18-2020, 10:19 PM.


    • #3
      First of all, I'd like to say to the IC Network. I suspect the injection is an instillation --- using a catheter, a solution is put into the bladder and it can be a huge help. There are different solutions used in instillations. If you're contemplating doing this, I suggest you find out what's in the solution and post here so others can share their experiences. There are people with IC who do instillations at home --- so if it helps, you might want to consider that.

      I hope the DH aloe-vera helps. It may take a while so don't give up on it. It's also available in the ICN Shop (see link at the top of this page).

      It actually may be fortunate for you that your insurance denied Elmiron. They're finding an unfortunate effect on eyesight after years of use.

      I had a severe incontinence problem when I had pneumonia and ended up wearing what I called "pull-ups" when I was in the hospital.

      Diet absolutely can have an effect on symptoms --- it's good that you are working on that --- there's diet information on this site, including food lists. I suggest you stick with the bladder safe list for a while before adding anything. I think it's also a good idea to keep a diary so you can track what helps and what doesn't.

      I almost forgot --- many ICers find wearing plain cotton underpants works best for them --- and nothing tight.

      Sending healing thoughts,
      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      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:


      Diet list:

      AUA Guidelines:

      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