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  1. #1
    ICN Member
    Join Date
    Jan 2018
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    2

    Mild/Moderate IC Success Story

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    Hey Everyone,

    I just wanted to share my journey with the hope of encouraging some other people. I know when I was in the hardest part of my IC battle, I came here and gained a lot of knowledge and encouragement from reading others' posts.

    I was diagnosed with IC about a year ago, at 37 years old. I of course thought I had a UTI, but after two rounds of antibiotics, a trip to the gyno to ensure i didn't have more ovarian cysts pressing on my bladder (i'd had some cysts removed 3 or 4 years ago), and a couple of visits to a urologist, it was confirmed as IC. I'd had a UTI maybe once or twice before, but never chronically. And no other issues down there.

    Just before I was officially diagnosed, I had done some googling, and was pretty sure I had IC. I started combing the internet, including this forum, and started taking everything from Quercetin and Bromelain to Marshmallow Root and Desert Harvest Aloe Vera. I even tried D-Mannose, in the hope that mine was bacterial related. No dice. The D-Mannose just made it worse! (and yes, it was the kind that was just the sugar, no acid)

    Finally, on my second visit to the urologist, I got a Cystoscopy and I was prescribed Elmiron and low-dosage Amytryptiline (an anti-depressant, but not used as one here. the doc said it works in tandem with the Elmiron, but they don't know exactly how/why). The cystoscopy showed irritation, but thankfully no lesions or anything more serious. When I went to pick the meds up at the pharmacy, the Amytriptiline was dirt cheap, but the Elmiron was $700, for a 1 month supply. I almost cried in the pharmacy.

    I managed to pay for two months' worth by depleting a significant chunk of my savings. Of course, right as my pills ran out, I was starting to feel a little better. But after a few weeks of no pills, it was back with a vengeance.

    I did more googling and found a compound pharmacy that delivers to my state (CO). They charge less than half as much as the cost of Elmiron. Still not cheap, but way more do-able. (Ends up being about $150/month) Thanks to those of you who have posted about compound pharmacies. My urologists had never heard of anyone compounding PPS (pentosan polysulfate, aka Elmiron), so once they verified the pharmacy was legitimate, I was able to get back on the generic Elmiron.

    Also, I learned some good stuff from the PA I see now at the Urology office I go to. (She's WONDERFUL—better than they specialist at the same place who I went to first.).

    • She has me on 1500 MG of Glucosamine daily. And honestly, this might be the thing that helps the most for me. I notice that when I forget to take it for 4 or 5 days, my symptoms tend to creep back in slowly. She said Glucosamine is one of the few things that's been medically studied and seems to work. Some of the other things I've taken had some Glucosamine, but nowhere near 1500 MG per dose.

    • Baking Soda and water. She told me to drink it BEFORE i go out somewhere for a drink. And it has really helped! I still take Prelief, but honestly, drinking a half teaspoon of baking soda in water 2x a day or so (or just when i know i'm going to have a cocktail or glass of wine), has helped immensely.

    • WATER. I didn't drink enough water before. Now I make sure I have a minimum of 2L a day, every day. I pee a lot, but since I drink a lot, that makes sense. At one point I was afraid that me peeing all the time meant something was still wrong. So the PA I was seeing had me track my fluid intake and out put for 24 hours. It was annoying, but it was WORTH IT! My bladder was basically doing it's job—filling to capacity, and telling me to go when it was full or very close to full. IC can be a crazy maker, and so tracking my fluid intake/output helped me not feel like a crazy person.

    I'm now doing REALLY well. Of course, I never had the severe issues with IC that so many others have had, but I can tell you that for several months last winter/spring, I was in a lot of pain, and cried a lot, and was living with a lot of fear. It wasn't until September/October this year that things finally normalized. But I drink half-caff coffee every morning, eat mostly what I want, and enjoy cocktails and wine on a relatively regular basis.

    This week I've been having some minor issues, but it's also the first week back to work after a break (I always do really well on breaks, but when back at my desk job, that seems to make things worse initially. I had a special cushion for a while that helped some; just got rid of it before xmas). Also, I've had a fair amount of pizza and wine and chocolate, and haven't been keeping up all that well on baking soda or Prelief. I wouldn't say I'm totally in remission yet, but I'm close. My quality of life is back up to 90-95%, as opposed to last winter/spring and early this summer when it was closert to 40-50%.

    If you are struggling, hang in there. This IC thing has been so hard. I wish I could do the last year of my life over again; I was so miserable. But, I got better enough that I feel really good. I hope and pray you will too.

    For what it's worth, I'm praying for all of you. I wouldn't wish IC on my worst enemy. And, I know it's exhausting, but, keep fighting. Do the research, get to the right doctors (ones who will listen and who will help!), and don't give up.

  2. #2
    ICN Member
    Join Date
    Oct 2017
    Posts
    34

    Re: Mild/Moderate IC Success Story

    that is a great post!! thanks for posting it. Did you ever get the bladder instillations? How did you know when the elmiron/generic elmiron started working?

  3. #3
    ICN Member
    Join Date
    Jan 2018
    Posts
    2

    Re: Mild/Moderate IC Success Story

    you are so welcome!

    i never had bladder instillations. that would have been the next step had the elmiron not worked as well as it did/does. i could tell the elmiron was working because the pain was waaay less intense. and, eventually, i noticed i didn't have to pee as much, and i could do things like sit cross-legged in my chair at work for longer than a minute or two (at first, i couldn't sit that way at all—it would immediately irritate my bladder and make me feel like i had to pee, even if i had just gone).

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