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  • Any suggestions?

    Hello... I have been reading the forums here as a guest for a while and have learned a lot of things. I have always had extreme urine frequency, gave me a lot of problems when I was a kid in school. I was dx'd with IC 10 years ago, been thru several urologists. Currently I am just taking Enablex nightly. I was on Elmiron for years, did not know if it helped or not. Stopped it about a year ago, after eliminating artificial sweetners from my diet and rarely ever flaring. I avoid acids when I am in a flare, and put sodium free baking powder in my low acid coffee. I rarely sleep (insomnia since childhood.)
    About 6 months ago I was practically pain free and then it all went bad. My husband and I decided that we were going to move 3 states away to the families farm that they are giving us. I would move all the animals and start to work part time, he would stay at his job and try to sell the house (dead-end, cant even give it away.) I thought I could deal with the separation, but apparently I cant. The stress has caused me to be so flared-up. I found a new primary MD who suggested I start an antidepressant due to starting to have anxiety attacks and a lot of weight loss. I suggested Elavil since I had read that it helped some IC patients. She suggested I started on 10mg/day and increase 10mg every 3 days until I was up to 50mg. I started on 5mg, for 3 days I could not sleep, funtion, eat. Had nausea at night.
    I finally got into a new urologist this Mon I got off this website. I thought she was very knowledgeable and aggressive. She talked me into starting instills with heparin/kenalog/marcaine. I did my first that day. She took urine and urethral swabs for cultures, and sent blood to test my hormone levels (females in my family have a hx of early menopause, I am 40.) My biggest problem now is not my bladder, but extreme urethral burning for a few months now. My bladder felt better after the instill, but I dont know if it made the urethral burning worse. I am suppossed to get 5 more weekly instills. In 2 weeks I should have the hormone panel and all the cultures back. She told me to stop the elavil since I was so snowed, she did not think I would be able to tolerate a therapuetic dose. I will have health insurance for a few more months, so am going to keep seeing this urologist as long as I can. She said dont bother going back on Elmiron since I cant afford it without insurance. She gave me estradiol cream to try 2x a week to see if it helps with the burning. I use ice and heating pads for the burning, but nothing seems to help. I have lidocaine gel, but am scared to put anything near my urethra for fears of getting a uti. I dip my urine daily to check the PH, having a hard time keeping it alkaline even eating a bland, depressing diet. I quit jogging and have just been walking. Anyone have any suggestions, I would be greatly thankful.
    I have basically done every treatment for IC except cyclosporine and botox. Everything has failed. I live on pain meds all day. My diet is so strict that I now have multiple vitamin deficiencies. I have also tried numerous alternative therapies. I would do a cystectomy, but doctors seem to think living in pain is better. Currently taking Synthroid, Elmiron, Percocet, Toradol, Desert Harvest aloe. Interstim done 4 times, what a waste. Also newly diagnosed with Hunners Ulcers on cysto. Now disabled due to IC. A body of life, a bladder of hell.

  • #2
    Sorry I can't help, but i'm sure some of the long timers will chime in after work hours. I wanted to say welcome to the IC family.
    IC diagnosis 3 weeks ago.
    Vesicare 10 mg once daily
    IBS and Gerd-Zegerid
    IC diet
    Elmiron 100 mg three daily
    Hydroxyzine 25 mg at night
    Amitriptyline 10mg at night
    Diovan 60/12.5 daily
    Topral 50 mg daily
    Zoloft 100 mg at night
    Klonopin .5 twice daily

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    • #3
      insurance sucks, doesn't it? if you have AAA auto, they have a prescription program that gives you a discount on meds. it's not much, but these days any little bit can help. since you're worried about a uti when you use the lidocaine, make sure you cleanse the area around the urethra well, and also the opening of the lidocaine tube/jar/whatever it comes in. use alcohol pads found in first aid kits or rubbing alcohol. you can get latex gloves at walmart and other places to make the process a little more sterile, if you like. maybe that'll enable you to keep the pain/burning under control until a better option kicks in. good luck!


      Live until you die.....don't let IC control your life. Rock your world and as my heroine says, "fiddle dee dee, tomorrow is another day!"

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      • #4
        Normal, healthy urine is very slightly acid. Alkaline urine can be a breeding ground for infection. If you have insurance now, I suggest you look at getting a continuation policy if the insurance is with employment. With a pre-existing condition, getting insurance can be close to impossible.

        Warm 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

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        • #5
          My husband and I can take out COBRA for 18 months after he leaves his job and moves up here, but it will run $800-1000 a month for both of us. He can live without the insurance, but since he is the policy holder, they wont let him keep the COBRA on just me. I have started to research companies that take prexistings, but cant get any quotes until I officially do an application. I pray that the IC will go back into remission once I get thru these stressful times. In TN, the state has a policy for people with preexistings once they have been refused coverage and six monthes has elasped. It will run $394 a month. Will have to work on getting my TN residency. Thanks for the advice
          I have basically done every treatment for IC except cyclosporine and botox. Everything has failed. I live on pain meds all day. My diet is so strict that I now have multiple vitamin deficiencies. I have also tried numerous alternative therapies. I would do a cystectomy, but doctors seem to think living in pain is better. Currently taking Synthroid, Elmiron, Percocet, Toradol, Desert Harvest aloe. Interstim done 4 times, what a waste. Also newly diagnosed with Hunners Ulcers on cysto. Now disabled due to IC. A body of life, a bladder of hell.

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