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  • My story.....

    I have had pelvic/bladder pain for as long as I can remember.....Dr's thought I had endometriosis I didn't), but after repeated bladder infections and severe kidney (flank) pain I had had enough and was referred to a urologist. During this time I would have a urinalysis after repeated 'bladder infections' and there would always be a high white blood cell count and moderate to large amounts of blood.

    Finally, I had the cystoscopy with distension. However, my bladder appeared quite healthy, which stumped my doctor. He put me on something for an overactive bladder, which helped but I was still having lots of pain, bloating and extreme lethargy. After one of my visits I ended up in tears and he decided to try me on Elmiron. It worked!!!!!!! I have now been on it for a year, and my doctor believes I was in the early stages of IC -- honestly, I can't imagine pain any worse. At least I have something -- a drug -- that helps me lead a normal life, I was getting pretty scared. Now, I know what triggers my flare-ups and I have a better understanding of it. I have yet to hear of anyone suffering from kidney/flank pain who has IC -- is it uncommon?

    Thanks for letting me share a bit of my story. This site is very helpful.

  • #2
    yes it is comman i'm one of those people. i also get polyofirs (sp?) In my right kidney and my white blood count goes up.

    Oh welcome to the icn board i hope you enjoy it and fine many answers you are looking for. wink
    Medicine taken daily or as needed:
    1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
    2. MS.Cotin 100mg 3x daily
    3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
    4. Fentanyl 100 mg Change every 48hrs.
    5. Gentamicin 80mg install after each rescue treatment
    5 Leviquin 500mg self start as needed.
    6. Klonopin 1 or 2 daily as needed.
    7. Prosed/DS as 1 every 6hrs as needed.





    I have IC, but IC doesn't have me anymore!

    Comment


    • #3
      I also have the flank pain, on my left side and sometimes on my right. Also, I have read about people who don't have the pinpoint bleeding, but do have IC because they have no other diseases. Glad that the Elmiron is working well for you. Welcome to the boards!!!

      Hugs,
      Jess
      Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

      Comment


      • #4
        ashleigh, may i ask how long did it take for the elmiron to kick in. I've been on it fice and a half months now, and nothing much happening yet. I have good days, but not continually. I'm planning on staying on it, just wondering about your timetable to get relief with this drug.

        Comment


        • #5
          Hi and welcome to the boards. I do get flank pain with my ic and my white blood count goes up too. I guess I am not alone in this. I will have to ask my uro why the white blood counts go up. I am glad to hear that the elmrion is working for you. Please keep us postedon how you aredoing.
          Hang in there , There is hope.
          There is hope. Prayer works.

          Love, Debbie

          Comment


          • #6
            Hi Guys

            I thought I would share my story as well. I am 29 yrs of age and have been suffering from bladder problems for 10 years. I live in Australia however I wasnt diagnosed with IC until 2000 when I was living in USA for 18 months. It was one of the happiest days of my life to know that this wasnt in my head and I do actually have a medical condition. I was put on various medications and DMSO treatments and my frequency went down from 25 times a day to 10 times a day. I felt I had some control in my life. However since returning to Australia I have nothing but problems and my bladder frequency and pain have returned to back to the beginning before I was treated. I assumed that returning to Australia (another civilized, westernized country) I would be able to continue with a similar successful treatment. However the urologists I have seen here seem incompentent and are very unhelpful. The urologist I saw this year has just put me antidepressants to help me sleep at night. Which they do help or else I would be up 6 times a night. However it has got to the point where I cannot have a good nights sleep without them. They wont prescribe me any other tablets and they dont think much of Elmiron.
            I decided to also see a Naturopath too, however I could only afford to see her a few times as they are very expensive. So far she has helped with my general health and improved my energy but has not helped with my bladder yet. So again I have reached a deadend, which I will endeavour to overcome, but it gets so frustrating at times. Last night I could not help but cry in bed as I realize my bladder is ruling my life once again.

            Comment


            • #7
              Tiffany--
              Hi I am so sorry. Are you thinking of coming back to the states for treatment? I know what you mean, I was so relieved when I found out that there was something actually wrong with me, that it wasn't all upstairs! eek Maybe you can get in touch with the international IC network and find a uro that you can see. I hope you find the help that you need.

              Hugs hugs and more hugs,
              Jess
              Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

              Comment


              • #8
                Tiff,
                Welcome to our board! You will find alot of helpful information here. if you need anything just ask someone will try to answer your question.
                Medicine taken daily or as needed:
                1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
                2. MS.Cotin 100mg 3x daily
                3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
                4. Fentanyl 100 mg Change every 48hrs.
                5. Gentamicin 80mg install after each rescue treatment
                5 Leviquin 500mg self start as needed.
                6. Klonopin 1 or 2 daily as needed.
                7. Prosed/DS as 1 every 6hrs as needed.





                I have IC, but IC doesn't have me anymore!

                Comment


                • #9
                  Tiffany - there is some good info on the site about natural remedies. They do recommend you be cautious and really research them, but here's a link to the page: http://www.ic-network.com/handbook/herbs.html

                  You might also be interested in this page: http://www.ic-network.com/handbook/naturalfoodsupp.html
                  Kim

                  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

                  Comment


                  • #10
                    I think you might like this guest lecture, also: http://www.ic-network.com/guestlectu...cript0503.html

                    I don't know about the availability of these supplements in your country, though.
                    Kim

                    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

                    Comment


                    • #11
                      Tiffiny- I hope you find relief soon. Don't give up. We've all felt the "dead end" part of an Ic diagnosis. Hugs to you!

                      Ashleigh-Boy oh boy, hon I have kidney problems as well as IBS with my IC. Others can list many more. But follow the IC diet along with the Elmiron and add foods back slowly so you don't trigger a flare. And I'll not talk about stress cause that triggers mine more than anything.
                      Take care and I hope you keep feeling better!
                      Jaime
                      Tons of support,
                      Jaime

                      IC angel helping families in need for the holidays. [email protected]

                      Comment


                      • #12
                        Tiff welcome to the boards. You are not alone, and please keep posting and let us know how you are doing. I know there is some information on internatinaol drs on the site that you could see possibly in your country. Let me know how you are doing.
                        Hang in there , There is hope.
                        There is hope. Prayer works.

                        Love, Debbie

                        Comment

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