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  • Older IC patients!

    For any older IC patient who has had it for like 10-20 years and got diagnosed around 20 I have a couple of questions. Did things get better or worse over time? Has it affected you having children?
    Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

    Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

    Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

  • #2
    40 yrs and counting

    I had this IC for 40 years, but I don't consider myself as having severe IC at all ever. True, I have had infections and non-infective flares, but never constant pain for more than a few days at a time. I always got a break but I never returned to real normal, either. It totally destroyed my intimate life because there was ALWAYS pain after and I just couldn't deal with it anymore. BUT I survived 2 pregnancies (2 miscarriages, too). I also quit work because I could and because it seemed I couldn't hack it and raise a family. I think when I was younger I think I was not as so prone to flares, but I did have them. There are times now however when I feel probably as good as when I did when I started to get IC. What I am trying to say that I think it is age that has worsened IC, not that IC itself got so much worse. At the moment now I'm only slightly uncomfortable. I week ago I had a flare for a few days and I took prosed/ds and valium. I don't like drugs in general. Through the years I tried a lot of different things and I really wasn't to happy with anything. But drugs it is hard for me to take for the long term, so now it is the first time I really am trying something - the elmiron. I'm kinda of prepared if my hair falls out ( I think). I really wish that I found something natural but I haven't. I do believe it is out there but it is hard to try something gentle when you are in a lot of pain. I think if you can short circuit the pain before years go by maybe you can block those pathways from setting up. I had IC so long before it being diagnosed, I could not do that.
    I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

    Comment


    • #3
      I've had diagnosed IC for 36 years and feel better than at diagnosis. I think it's because of treatment and diet.

      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

      Comment


      • #4
        I'm like purpleviolet. Have had it since I was about 25 (though only recently diagnosed) and it hasn't changed for me much at all. I just have days where my bladder "bugs me" and I go all the time and days where it doesn't. There doesn't seem to be rhyme or reason to this. I have two kids, 18 and 12. I think alot of people go into remission when they're pregnant which is promising. It doesn't necessarily get worse. I think it depends on that GAG layer in your bladder and if it becomes more compromised over time. A good reason to start elmiron I guess (I see my uro next week and will ask him to start me on it), I've been paranoid about the hair loss thing.
        Cindi


        Gelnique for frequency/urgency - works great
        Macrobid after sex
        Prilosec, continuous birth control pills
        synthroid .088mg, mucinex-d, restasis

        Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

        Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

        IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
        AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
        AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
        Great treatment flowchart on page 19 of the pdf

        Comment


        • #5
          My IC symptoms began 35+ years ago. I would have weeks where I felt perfectly fine alternating with symptom episodes that were just plain horrid. Doctors assured me I was fine so I found no help there. I did my best to "live with it".

          In 2003 I finally had enough and went in to my doctor with the ultimatum that this either gets fixed now or I wanted my bladder out. By 2004 I had my IC diagnosis, started the diet & meds, and everything improved dramatically from that point on.

          So even though not diagnosed in my 20's as you'd asked in your questions...
          Did things get better or worse over time?
          My IC still never progressed in all that time left undiagnosed & untreated. After the symptoms began they remained the same for almost 30 years. Once I began diet, meds and made some lifestyle changes my flares lessened to where today, IC rarely impacts my life any more. I can't help but believe if only I had been diagnosed and made these changes earlier I could have avoided so many years of pain!
          Has it affected you having children?
          No. I've had three pregnancies and each time my symptoms went quiet throughout pregnancy & breastfeeding. It always returned once my children weaned.

          Vicki
          "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

          Comment


          • #6
            That sounds promising! I see two of you wrote that u take elmiron. Have you tried cystoprotek, my new uro just started me on it and it works much better than elmiron for me and no hair loss. you can buy it through this site at the icnshop.
            Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

            Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

            Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

            Comment


            • #7
              I took Elmiron for two years following diagnosis but due to it's cost switched to Cystoprotek about three years ago. Both seems to work equally well for me.
              "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

              Comment


              • #8
                I have been taking cystoprotek for about a year I think. I don't think I'm doing any better now then I was then. I'm no worse so I guess I'll just keep taking it.
                Cindi


                Gelnique for frequency/urgency - works great
                Macrobid after sex
                Prilosec, continuous birth control pills
                synthroid .088mg, mucinex-d, restasis

                Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                Great treatment flowchart on page 19 of the pdf

                Comment


                • #9
                  I'm not sure if any of you can answer this... I've been diagnosed for 2 1/2 years almost, with IC, but suffering for 5 years. I took vesicare, and elmiron and it didn't help at all. Did rescue instills for 12 weeks, 2x a week for 6 weeks, then 1x for the remainder, this didn't help either.

                  So I guess I'm getting at...Does elmiron/cystoprotek really help some patients in a way that it is beneficial to take it and can you tell the difference if you don't take it.

                  Right now I'm not taking either of them anymore... Just elavil, atarax, tramadol, percocet. But I am starting to wonder if I should start taking them again, my dr wants me too, but all my meds are expensive now, and cystoprotek is the most expensive one and I don't want to waste money if it isnt going to work.


                  Has anyone else on here not got relief from either one? Or does it take sometimes up to 6months-1 year for it to reach the theraputic affect?
                  Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

                  Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

                  Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

                  Comment


                  • #10
                    Originally posted by ginaaa22 View Post
                    Does elmiron/cystoprotek really help some patients in a way that it is beneficial to take it and can you tell the difference if you don't take it.
                    I think these meds do really help "some" patients. The strange thing about IC seems to be that one person's remedy doesn't necessarily work for the next person. It seems like I've read that Elmiron works for about half (or maybe a bit less?) of the people who try it. I don't know why this would be? Could it have to do with a variable in what is behind our personal versions of IC?

                    Anyway, in my case after two years of Elmiron I decided to stop it and try to manage with diet alone. At first I thought that was going to work but then gradually my baseline symptoms started to ramp up and my flares became more & more frequent. Rather than go back to Elmiron I decided to try CystoProtek. Soon my symptoms were back to being quiet 95% of the time.

                    I don't want to waste money if it isnt going to work
                    I know. It's really a shame we are put in this position!
                    Last edited by VickiB; 02-22-2011, 01:52 PM. Reason: addition
                    "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

                    Comment


                    • #11
                      For someone who cystoprotek/elmiron works for.. What does it actually do? Decrease urgency/frequency? Pain?
                      Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

                      Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

                      Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

                      Comment


                      • #12
                        I had IC like symptoms since I was 18 years old, finally got dx at age 32 (I am now 50 years old) after almost of 5 years of tests, procedures till my doctor at the time conference with another doctor who specialized in IC and he mentioned this to him but told him I was too young to have it.
                        I have my good days and bad days (mostly good) I have had 2 children they are now young adults; worked full time.
                        I am taking Elmiron - on it since 1997 seems to help along with Neurontin.
                        so between diet and medications/treatment I think I am doing pretty good.

                        Comment


                        • #13
                          I have had IC for about 16 years. During those years I have been able to cope with it and generally lead a normal life until recently. I have now been diagnosed with IBS. It has triggered not only the digestive track but my bladder as well. I am starting the no glutten and dairy diet, but the bladder is in a lot pain. The Gastro says it is very hard to treat me because of so many issues at my age (72). I use 1 Vicodin a day to control some of the pain. I am very careful not to use more. I have drinking perppermint tea, which I think is an irritant to my bladder - which tea is safer?
                          Been a supporter of IC awareness for many years.

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