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ic nightmare

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  • ic nightmare

    I was just diagnosed to have IC a couple of days ago after suffering the terrible pelvic pain for over five months. Despite 6-8 visits with my ob-gyn, nothing helped. Finally I was recommended to a urologist who first saw me 8 wks ago but was only given homework to journalize my daily voiding before i was to see him again two days ago. All these months, I couldn't endure shopping, walking for more then ten minutes and even cooking for over thrity mins at home. I was a total wreck to everyone. Although I worked in an office I had to go the restroom almost every 30 mins, as well as taking aspirin to ease the pain almost daily. I am now taking an anti-depressant pill that seems to have relieve my pain quite a bit and at least helped me sleep two to three hours without getting up to void at night. Before this I barely slept straight two hours every night. Typically, I would get up every hour to void even just a few drops- forced by pain in the lower part.
    The effect of the medicine I am taking seems relieving but I get very dry-mouthed and dizzy, even a bad headache but aspirin is not recommended for now. I am trying also to avoid citrus fruits and acidic foods, which I was habitually consuming in huge amounts daily. Guess I must have burned my bladder wall from all that acidic foods I have been taking all these years. Imagine, I could easily gobble up 5 oranges in few minutes sitting in front of the tv.
    I hope to fully recover from this horrible ic even if I have to make over my eating styles. I read, however, that there is really no cure for this. Am I to take this medicine for a long time? [img]confused.gif[/img] [img]confused.gif[/img] [img]confused.gif[/img]

  • #2
    Welcome, Morrey. There is no cure and I don't think eating citrus and acid foods causes IC, but stopping eating them, as you have, could sure make a difference. It made a HUGE difference for me!

    From what I have gathered from my year or so of dealing with this disease, most if not all of us will have to continue taking medication or using whatever kind of treatment we do until they find a cure.

    I have to tell you, though, I am on 4 medications that space out to 5 different doses a day. In the beginning that seemed so overwhelming - but today I am on autopilot with it. I have the doses separated out into weekly medication organizers and I really almost never forget a dose. It is no big deal now. So worth it in order to not be in pain, or not in pain as often. But a cure sure would be nice!!! [img]smile.gif[/img]

    And since you just got diagnosed, there are still a lot of different options for you treatment-wise --- you may find something that makes a really big difference for you!

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


    • #3
      Welcome to the IC Network. You have found a place where you can learn about your IC and also receive some support in dealing with it.

      First of all, you did not cause your IC. Acid foods can be irritating to an IC bladder, but will not harm a healthy one --- so if you had a healthy bladder, the oranges and other fruits would not have caused you to get IC.

      The best suggestion I can think of for you is to read the information in the Patient Handbook on this site. You'll find it on the "Browse Our Site" pull-down menu at the top of this page.

      Sending a welcoming hug,
      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


      • #4
        Aloha, Morrey.
        I'm so sorry to hear of your recent diagnosis. Right now, there is no known cure for IC. However, there are many, many IC patients who have found treatments that control their IC. I'm one of them. You'll find that each one of us might have different responses to various medications and foods. Each of us has to explore and find the right combination of us. For me, Elmiron and Ditropan XL - along with avoiding diet triggers - has allowed me to return to a mostly normal life. Most days I have little to no symptoms, a far cry from my pre-treatment days with IC. Had you told me back then how much better I would feel, I wouldn't have believed it. [img]smile.gif[/img]

        I cannot emphasize enough how totally worth it taking these medications and altering my diet has been. Like VM, I also don't give any thought to taking my meds now. I do still grumble over the diet and cheat sometimes but a painful flare up reminds me of why I shouldn't. It will get easier for you, so hang in there. It's definitely worth the work to feel so much better.

        In addition to reading the ICN's patient handbook, I'd highly recommend two great books on IC - Dr. Robert Moldwin's Interstitial Cystitis Survival Guide and Bev Laumann's Interstitial Cystitis Cookbook. Both are must haves for the IC patient.

        Welcome to the ICN! You aren't alone!
        Melanie J.

        P.S. My hubby and I honeymooned on the Big Island in February - beautiful! Which island are you on?
        "The sun shines not on us, but in us." John Muir

        Living a happy life in spite of IC!


        • #5
          Thanks so much for sharing your experience and support. I suppose from the onset i should psyche myself to live with ic. I don't mind taking medication but it is the side effects that i have difficulty dealing with: dizziness, dry mouth and a lingering and throbbing headache now and then--more now than then in fact--not being able to take aspirin for fear of complications.

          I hope in a few days my system will get used to the medication and i won't have to deal with the rest. I must say, though, that the relaxant pill has practically keep my pelvic pains at bay--hopefully for good--wistful thinking?

          I live on Oahu, Melanie, and have been working here for the past six years now. I used to be active physically but now i just go to work and rush home to drop literally. I seem to have no energy left for anything at all.

          Thanks, again, for your kind support. Aloha. <img src="graemlins/angel.gif" border="0" alt="[angel]" />