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Is there hope?

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  • Is there hope?

    I was diagnosed in October 06. My bladder only held 450cc under anesthesia and my doctor told me that I had a moderate to severe case of IC. Are my chances of becoming asymptomatic very slim because of having a moderate to severe case? Does what your bladder look like directly coincide with treatment success? I've never really had a lot of bladder pain. I've been on Elavil and Elmiron for about 3 months and I have noticed improvement...but I want to be better than this? Is there any chance of this happening or should I be happy with what I've gotten?!?!??!?!


  • #2
    Dawn, there is ALWAYS hope - so, don't give in or up! If you've seen results this far on the meds, there's all the possibility you'll see even more improvements! Positive attitude is just as important in my eyes as medication and our docs, lol! Sounds like you are on your way up, so keep on keepin' on!!!!!

    BIG HUGS!!!
    How do you eat an elephant? One bite at a time...

    Harry arrived 2/23/09!

    *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    IC Diet Cheat Sheet:

    IC dx'd Nov 2004
    Lymphocytic Colitis dx'd July 2005
    Possible IBS
    Current IC Meds
    Vistaril 25mg in the evening
    Previous IC Meds taken:
    Cystoprotek - 2 caps 2x's a day
    Elmiron, 100mg 3x's a day
    Ditropan, 5 mg 3x's a day
    Wellbutrin 150mg 2x's a day for Anxiety/IBS
    Pepcid 40mg a day for GERD
    Zytrec for Nasal Allergies
    Align Probiotic daily for IBS


    • #3
      Hon, there is always hope

      No, the severity of the IC doesn't correlate with treatment failure. A horrible looking bladder can respond very, very well to treatments, and sometimes a bladder that looks pretty mild can be hard to treat. IC is weird like that. I have very severe IC myself, and yes, I have had to try a lot of meds and also have had the InterStim implant put in last month, but I am still working full time and have many, many great periods. Yes, you will probably always have some symptomatic days, but remissions are possible.

      If you feel you could be doing better, discuss that with your doctor. There are more treatments available that you can add to your regimen that might just give you the extra bit of help you need Just keep fighting to get the best care possible and don't give up until you are feeling good!

      *Diagnosed with severe IC in 2004
      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

      **I am not a medical authority nor do I offer definitive medical advice. 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.


      • #4
        There is absolutely hope that you will continue to improve. Elmiron can take six months or longer before it becomes effective; some find it almost totally controls IC symptoms.

        Warm healing thoughts,
        Stay safe

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        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


        • #5
          Thank you ladies!

          I went up to bed after typing my post and sat and cried my eyes out because I am so scared! I quick came down and got on the computer to see if anyone had responded...and now I'm crying even more.......THANK YOU so much. I get on this site faithfully every day because no one else "gets it" all truly understand...and you are such an inspiration to so many women!!!!! thanks again!


          • #6
            Definitely hang on to that hope. I know how scary it can be to hope b/c there is the worry that it will all come crashing down. If you have already seen some improvement with just 3 months on Elavil and Elmiron then I think you should hope for better days ahead. Absolutely the longer I have been on Elmiron the better and better I feel. I haven't had symptoms in months and months now and as each month passed in the first couple of years on Elmiron especially, the flares got further and further between and less intense. I can't remember my last flare now.

            Definitely hope.

            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