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  • It CAN get better!

    I know I have'nt posted here in a while, but wanted to share with those who may be just learning how to manage their IC that it can get better!

    So, here's my story.

    I've lived with IC since 1986 but wasn't diagnosed until 2010. In the meantime, 24 years to be exact, I was passed around from urologist to urologist, who all came up with "diagnoses" and proceeded with barbaric treatments. For about 3 years it was "recurrent UTI" and I was treated with antibiotics constantly. Then when the pain still did'nt go away, then I was sent to another uro who diagnosed "narrow urethra" and the treatment for that was urethral dialation, which was performed by inserting stainless steel rods in my uretha, each time each rod was gradually larger. That went on for about 15 years or more. Then off to another uro who diagnosed "urinary dysfunction syndrome" and gave me blood pressure pills for it (incidentally, he never even examined me). When that did'nt help I demanded a new uro and fortunately, (here's the light at the end of the tunnel) they had a uro/gynecologist just join their team. She did urodynamics, then immedialtely scheduled me for hydrodistention w/ cystoscopy. After that procedure was completed, my insurance carrier changed and I could no longer see that doctor (she was at Kaiser). So I had the procedure done but still did'nt know my diagnosis. So, on to a new general practitioner, and it takes several months for Kaiser to forward my records to my new GP. So finally, last October, they receieve my records with the diagnosis of IC. To be honest, eventhough I knew IC was a possible diagnosis when I had the hydro/cysto done, all I could mentally feel upon learning that it actually was IC was relief. I finally had a viable diagnosis to work with. Then I had to be referred to a new uro, and wasn't able to get an appointment till the week after Christmas. Luckily, this new uro is one of the best in this area. He examined me, reviewed my records from Kaiser and told me, that in addition to IC I also had severe bladder prolapse. He was very pragmatic in his approach to treat my symptoms. He prescribed Elmiron, hydroxyzine, cimetidine (an acid reducer) and the IC diet. I had surgery on 4/26 to have my bladder prolapse repaired. I have to say, just not having to deal with the symptoms of the bladder prolapse has significantly improved my quality of life and has helped me to focus more on the IC symptoms, as at times I could not tell if my pelvic pain was caused by the IC or the prolapse. Now, after 7 months of treatment for IC, I can now say that I have my IC under control!

    I did stop drinking caffiene (I used to be a heavy coffee drinker, but now I have switched to a low acid decaf and have only 1 cup a day, with cream). Caffeine and aspartame (which by the way is said to convert to formaldehyde at 84 degrees farenheit) I have learned are major triggers for my IC. Also, for years, I drank cranberry juice thinking it was good for my bladder, but have since stopped. The acid reducer, PRELIEF, has also helped tremendously. I feel like I have my life back. I can enjoy an occasional caffiene free soda, as well as a glass of white wine or a beer with no problems.

    There are some days though, that I wake up and feel that "IC twinge" and I have found on those days if I drink extra water and be careful about what I eat it usually subsides within hours. For once, I feel I have control of this disease, rather than this disease having control of me as it had for more than 20 years.

    To my sisters and brothers out there with IC, DON'T EVER give up hope! It can get better!

    And I have found that when I found out what worked for my IC symptoms, that having a mindset of gratitude helped tremendously in my mental outlook on this disease. Don't ever stop seeking out the correct treatment for you, and NEVER GIVE UP!

  • #2
    Thank you for sharing your success. We all need to hear from people who are feeling better.


    Donna

    P.S. If the blood pressure medication prescribed was cardura, it has a dual purpose --- it helps lower blood pressure AND also relaxes the smooth muscles in the urinary system.
    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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    • #3
      the blood pressure medication was Terazosin.

      Comment


      • #4
        Wonderful news...........thank you so much for sharing. So many times people come here for the first time and get scared when they read the worst of the worst, forgetting that when people feel good, they don't always post!

        Bless you for taking the time to share your story!
        Julie Beyer, MA, RDN
        IC Dietitian, Patient Advocate, Speaker, & Author


        Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

        Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

        You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

        ........ ........


        Other IC Diet Resources:

        IC Diet Webinar
        IC Diet Website
        For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
        Free IC Diet Booklet: What Can I Eat?
        Confident Choices IC Diet Blog
        IC Diet Newsletter


        *Let's Connect!*

        Comment


        • #5
          I completely agree!

          Mine is quite a long story (and some of you old-timers on here may remember me from 2003-2007) but the upshot of it is that my symptoms have been in remission since 2007 and I no longer take any medications for IC or OAB. I still have some OAB symptoms (always have) but they are greatly improved since my bladder healed up.

          Like DonnaBee, I occasionally have the "IC twinge" if I eat something that irritates my urinary tract - it might be short term urgency/frequency or urethral burning but if I drink water, it will subside in a few hours (and it is mildly annoying, not agonizing.) I haven't had a flare since before I went off my meds.

          Finding a treatment regimen that works (whether it's meds, supplements or a combination of the two), following the diet and knowing your triggers, managing your stress and maintaining a positive attitude ("I am a healthy person" as oppposed to "I am a sick person") can make a huge difference in how you feel and how your body heals itself. Our bodies ARE capable of healing themselves, but the right conditions need to be in place for that to happen, and that is different for everyone.

          Wishing you all healing and remission!
          Namaste

          "You must be the change you want to see in the world." - Mahatma Gandhi

          "The most important medicine is tender love and care" - Mother Teresa

          Proud mother of Ahleia, born on April 9, 2007

          -----------------------
          Diagnosed with:
          IC, OAB, Congenital urethral stricture, IBS, Vulvar vestibulitis, Heart murmur, Congenital cervical stenosis...but otherwise doing great!

          Meds:
          Currently in remission, but took the following for 3 years: Elmiron 200 mg., Elavil 25 mg., Detrol LA 4mg, Ovcon-35

          Health treatments/practices:
          Kripalu yoga, Chiropractic, Massage therapy and Reiki

          Comment


          • #6
            it can get better

            Hi,
            Great post. Thanks for sharing your story with us.

            If you don't mind my asking ,where was the Kaiser that had a Urogyn? I live in Northern Va. and as far as I know, the Kaisers here do not have that specialty.

            Thanks.
            Laurie

            Comment


            • #7
              the Kaiser was in Walnut Creek, California....she was in the urology dept though, rather than gynecology...

              Laurie, I also sent a reply to your PM. Sorry it took so long I've been super busy the last few weeks-this past week was my first week back to work after having my bladder surgery.

              Comment


              • #8
                Glad you're feeling better, DonnaBee! How long did it take the Elmiron to work for you? I've been on it for just three months now but haven't seen improvement yet.

                Comment


                • #9
                  Thanks for the positive post!! I have been feeling down lately because my IC has been in a flare for several weeks now. So, I went to the IC Success Stories forum for a pick-me-up!! Glad things are going well for you. Thanks for giving us all hope!
                  ~Valery~
                  Dx with IC 3/2009 - Cysto w/Hydro
                  Meds: Elmiron (400mg), Atarax (10mg), Elavil (20mg), Pyridium (as needed)

                  Comment


                  • #10
                    cjc: give it a few more months. After about 4 months I started to see improvement with the elmiron. After 6 months I felt pretty good. I still take the hydroxyzine at night, and will continue to do so since it apparently helps me sleep thru the night without having to get up to go to the bathroom.

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