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Frustrated..support and advice needed

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  • Frustrated..support and advice needed

    I think I posted about a month ago but didn't get any responses. I'm having a really bad day and could use some support from those who understand. It's been 8 years since I was disgnosed with IC. Ive been through pretty much every test and the most common treatments. I lost insurance for a few years but got married in June and now have wonderful insurance. I ended up in the hospital in July with pyelnephritis (I've been hospitalized several times for it) and was told that I have a good bit of damage to my right kidney. There's a lot of scar tissue on and behind it. When they discharged me they set me up with a very good URO. MY first appt went pretty well. He asked me about bladder hydrodistention to treat my IC, I told him I had it done years ago and can only remember the extreme pain that followed. So he decided for now to set up a months worth of bladder instills since they seemed to work decently well with my previous treatment. He said after a month we would see how it was working and go from there on adding other treatments. He also told me he was almost positive that I have kidney reflux and set up a test for that a few days later. (The test came back positive, I have stage 4 so its pretty severe) He told me if the test came back showing I did have it that I would have to have surgery to fix it. The crazy part is that I had a VCUG done about 8 years ago to check for kidney reflux and the test came back negative.
    As for the instills I'm frustrated. I was doing home instill before with Elmiron and they worked decently well. I was doing those 2-3 times a week though. He has me coming in once a week for Heparin instills. I have yet to see any improvment. After the first one I noticed within about 15 min that my bladder seemed to be somewhat calmed, which may have been a fluke, but it didnt last very long at all. I went last Thursday for my second treatment and it was HORRIBLE! The whole process was much more painful than any Ive ever had and ever since my bladder has felt so out of wack. Ive been having horrible spasms and I'm starting to lose control of my bladder. With that being said, he told me that from the CAT scan he could see I had bladder wall thickening. Is that normal with the IC??? I'm wondering if the thickening could be causing the lack of control. I've noticed in recent months my control has lessened but today I was driving in the car and it hit me out of no where. I was trying so hard to hold it but wasn't able to. My bladder completely emptied but I didn't even feel like I was urinating. I feel so disappointed in myself and my body. I'm becoming more and more depressed and my pain level is at an all time high. I just don't know what to do anymore. I could really use some encouragment and some advice. If any of you can help with ANYTHING I've mentioned I would be so greatful. TIA and I hope you are all having an easy night.

    -Kaylie
    Diagnosed:
    October 2005 with IC
    June 2010 with endometriosis
    August 2013 stage 4 kidney reflux
    Chronic UTIs


    I have been without insurance for several years but luckily I just got it back. Curently only treatment is Heparin instills done weekly.

  • #2
    I don't really have any solid or helpful advice, but I thought I'd just send you a big I'm sure others will have some more constructive advice for you.

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    • #3
      I'm so sorry you're in such a difficult place right now. When I did heparin instillations I did them at home every day. If you got relief for even a few hours, I suggest you talk with your doctor about self instillations more frequently. It could be the irritation that caused you to urinate without warning. It may not ever happen again. One thing I suggest you do today is to purchase some incontinence underpants --- that should give you a little reassurance that you won't have another bad event.

      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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