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Does IC get worse and worse?

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  • Does IC get worse and worse?

    Hi, does IC generally get worse and worse over the years or does it kind of start at a certain level and stay there. I know some people have quite mild symptoms, but will they one day have much worse symptoms? That's what scares me most as I'm not too bad at the moment.
    Thanks for any advice xx

  • #2
    I've read different opinions on this and I'm not sure if anyone really knows the answer. Mine has never been as bad as when it first started and have actually diminished over the past few months. I've read that it usually stabilizes and stays at the same level on and off or lessens and can go into remission. It would be nice to know what the most current consensus is on this.


    • #3
      My IC was diagnosed 36 years ago and I am actually better than at diagnosis, I think largely because I know which foods and drinks are a problem for me and which treatment options help.

      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


      • #4
        I was diagnosed 3 years ago and I am definitely better than I was.It took about a year for me to have real relief but I no longer thinking about my bladder and vagina 24/7.


        • #5
          Thank you everyone, that's a much more positive answer then I expected. I'm still not on any effective treatment so still feeling as bad as ever, if not a bit worse. I'm going to see my doctor today and am really pushing for an IC diagnosis so that I can get my symptoms under control.


          • #6
            My doctor at Stanford told me that it sometimes can worsen up to 18 months after onset, but that it generally doesn't progress after that.

            I am much much better than I was my first year with IC. I've regained a very good quality of life. This weekend, I went to "coffee" with friends (I drank hot milk with honey), went to lunch with other friends, cleaned the apartment, went to church, volunteered after that, then went for a 90 minute hike at a lake, watched a dvd, and made dinner for me & a friend. My first year with IC, any one of these activities would have wiped me out. I still have some symptoms, but my IC is pretty severe (started out voiding 60x a day, always in pain), so I still consider my case a success overall.

            I agree with Donna, learning diet triggers and getting a solid treatment plan (including physical therapy to restore my ability to exercise) has made all the difference!

            Hang in there, it does get better!

            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.

            New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
            Source - Pinterest

            Current treatments:
            -IC diet
            -Elavil 50mg at night
            -Continuous use birth control pills (4-5 periods/year)
            -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
            -Pyridium if needed,
            -Pain medicine at bedtime daily, as needed during the day several times per week
            -Antibiotic when doing an instillation to prevent UTI
            -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
            -Dye Free Benadryl 50 mg at bedtime
            -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
            -Managing stress= VERY important!
            -Fur therapy: Hugging the cat!


            • #7
              I can't speak for everyone with IC but I can def tell you that I am a lot better now than when everything first started.

              -Started having symptoms in May 2009.

              -Doing pretty well on diet alone.


              • #8
                Well after two years of symptoms my doctor, yesterday, finally diagnosed me as having chronic inflammed painful bladder. She didn't use the words IC or PFD but generally accepted that that was what I had, so I'm really relieved. I'm going to try (again) a really bladder friendly diet and work on relaxing my pelvic floor muscles and she is starting me on cystostat which is weekly instillations that seem to do a combination of creating a protective bladder coating, reducing inflammation and reducing pain. So fingers crossed! I feel as though I could be a lot better in a few months time and your messages have reassured me that once I gain control it shouldn't get worse.
                Thank you xx


                • #9
                  Some people seem to notice a difference right away with the diet but it took me quite a while. I didn't think I was very diet sensitive at first but when I stuck to the diet for a couple months I saw that it really did make a very big difference. So hang in there with the diet, you may be like me in that it will take a while to see a difference. I'm still doing great - and I was in a tremendous amount of pain at first.


                  • #10
                    My IC stabilized after the first year or so-after getting the right treatment. (I was dx with IC over 20 years ago) and I feel pretty good. I am taking my meds watch what I eat, (not as diet sensitvie as a lot of ICer's are but I do have to watch not necessarily what I eat but where (I can eat Mexican food- but its at only 2 resturants and yesterday someone at work wanted to try another place they heard about--needless to say, I won't go there anymore!)
                    Anyway, since being dx I have raised 2 kids (now grown up) work full time (I can retire from the state in 1 year!!!!) do pretty much what I want to do, sometimes I might over due it and and am in bed the rest of the weekend, but thats my fault!


                    • #11
                      I suppose if you do not stay on the ic diet and do things you should'nt do its possible.
                      <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


                      • #12
                        Three years ago I was also diagnosed with IC. Fortunately, I was diagnosed within a few weeks.

                        I would say the first 3 months were the hardest for me. Between diet, CystroProtek, Vistaril and occasionally hycosamine, I am doing okay. At the 3month mark, I think the CystoProtek kicked in for me.

                        I still can't wear tight jeans (can't stand anything touching my bladder) and I do love the IC cushion for vibrations when ridding in the car. I can even ride in my Miata again. I also just love the clothes pin trick icdonna wrote about on this site (I really can't stand anything touching my bladder area!!!)

                        Every day is not perfect but there are more good days than bad days.


                        • #13
                          So I suppose it must be that some people just get a worse case of IC than other people do, because some people seem to have very small scarred bladders and loads of pain and frequency while others (like me) have less symptoms- good capacity to my bladder, frequency not too bad and not that much pain. Or perhaps the people who don't seek treatment gradually get worse and worse while those who take their medication and change their diets don't get worse.