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  • #1

    Trying Med-Free

    I was DXed just last January, and I've been trying to control my symptoms with diet alone because my husband and I have been trying to conceive. At first, it was fine.. the diet didn't really help - but I have been in pain for so long, I figured "Great.. now I have a name for the pain, so I just have to wait a few months to get pregnant, and then I'll be fine.. after the baby pops out I'll be able to start some meds and get on track with this whole thing" Well, it's been 3 months and I'm not feeling so upbeat anymore. The diet isn't helping. I am so strict but I'm still in constant pain, I have constant pressure, and my flares occur daily - and they seem to be getting worse not better despite my strict diet and large amounts of water I'm drinking. So tomorrow I'm going to see my doctor to see if there's a better treatment plan. I'm so nervous.. because I don't want to be in pain anymore but I also want to have a baby.

    You know, any advice you have would be great. About what to ask my doctor tomorrow, or what to expect from the appointment. Any treatments any of you that are pregnant (or trying to get pregnant) are using and that are actually HELPING! I just want to have some hope. Thanks!
    I am Jenny.
    "Karma is affiliated with the Neopagan law of return or Threefold Law, the idea that the beneficial or harmful effects one has on the world will return to oneself."

    Dx:
    -UTI's and Kidney infections: Since 6 months of age
    -HPV: November 2005
    -Advance high-grade pre-cancer cells found in cervix: January 2006
    -LEEP procedure: January 2006
    -IC: January 2007

    Medications (Began Treatment 3/27/07):
    -Elmiron 100mg 3 x per day
    -Elavil 25 mg
    -Hydroxyzine HCL 10mg
    -Sanctura 20 mg 2 X per day (added 07/24/07)

    Weekly Instillations @ Doctor (Starting 07/31/07 instillations will be performed by self at home - Wish me luck!)
    -20cc Lidocaine 2% Plain
    -2cc Sodium Bicarbonate 8.4%
    -1cc Heparin (10,000 units/cc)
    Tags: None
  • #2
    Same boat

    I have no advice, but I feel for you. I am in the same situation, and looking for a solution myself. Hang in there, though...

    Good luck
    Dx's:
    IC -February 2007
    PCOS - August 2005
    Asthma and Allergies - 2003
    Depression - 1997
    Scoliosis/Sciatica/arthritis - 1997
    Hip Replacement -2001
    Possible IBS -2006

    Current IC meds:
    Elmiron, 100mg 3x's a day

    Other Meds:
    Metformin 850 mg/2x a day
    Singulair 10 mg/1x a day
    Albuterol and Advair
    Femara (infertility)

    Comment

    • #3
      You may already be doing this, but when you drink water make sure to only drink sips throughout the day. If you drink a whole bunch in one sitting it can be too much and can stress your bladder out.
      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

      • #4
        I was just curious about the type of water you are drinking. I've been finding that I can't drink some kinds. Probably not the problem but you might try different types.

        Comment

        • #5
          Water Choices

          I've heard that different waters can cause your bladder to be tempermental as well! I drink Deer Park, and then tap water from my home and work (i refill the water bottles). But I never drink tap water from another source, because I'm not sure if I'll have a bad reaction to it. I read in "A Taste of the Good Life" That most ICers are fine with Deer Park, and I believe that I am.. because I've never gotten a flare from just water before. Although that may be the cause of my constant pain/pressure. So maybe I should try a different brand and see if that helps to improve my symptoms. Do you have any suggestions?! Thanks!!
          I am Jenny.
          "Karma is affiliated with the Neopagan law of return or Threefold Law, the idea that the beneficial or harmful effects one has on the world will return to oneself."

          Dx:
          -UTI's and Kidney infections: Since 6 months of age
          -HPV: November 2005
          -Advance high-grade pre-cancer cells found in cervix: January 2006
          -LEEP procedure: January 2006
          -IC: January 2007

          Medications (Began Treatment 3/27/07):
          -Elmiron 100mg 3 x per day
          -Elavil 25 mg
          -Hydroxyzine HCL 10mg
          -Sanctura 20 mg 2 X per day (added 07/24/07)

          Weekly Instillations @ Doctor (Starting 07/31/07 instillations will be performed by self at home - Wish me luck!)
          -20cc Lidocaine 2% Plain
          -2cc Sodium Bicarbonate 8.4%
          -1cc Heparin (10,000 units/cc)

          Comment

          • #6
            Sandberg just beat me to it. I was going to suggest drinking bottled spring water to see if that helps. When you say you are drinking "large amounts of water" how much do you mean? It's possible to drink too much. You need six to eight cups per day --- and kim is right that it's best to take small drinks frequently.

            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

            • #7
              I've tried Evian before and really like it, but can't afford it. Mostly I drink Aquafina at work and do okay. I have a reverse osmosis filter at home and really like my water there. Donnas probably right about the spring water. Sometimes its so hard to tell whats bothering you. I do know to stay away from Dasani. It gives me great urgency.
              Hope you feel better.
              Anne

              Comment

              • #8
                Originally posted by ICNDonna View Post
                Sandberg just beat me to it. I was going to suggest drinking bottled spring water to see if that helps. When you say you are drinking "large amounts of water" how much do you mean? It's possible to drink too much. You need six to eight cups per day --- and kim is right that it's best to take small drinks frequently.

                Donna
                Well I say large amounts to emphasize the fact that I drink ONLY water.. which is good. I don't guzzle down gallons at a time or anything. I have a bottle at my work station, and I just drink it normally throughout the day. I usually get about 4 to 5 bottles in a day, which is about 7 cups.. so I'm right on target. And Deer Park is spring water, so I don't think it should be that causing me problems. I'm not sure though, does anyone else have problems with Deer Park water? I think I'm going to stop using my tap water and just stick to the bottled water, maybe that will help some.

                Thanks for all the suggestions!!
                I am Jenny.
                "Karma is affiliated with the Neopagan law of return or Threefold Law, the idea that the beneficial or harmful effects one has on the world will return to oneself."

                Dx:
                -UTI's and Kidney infections: Since 6 months of age
                -HPV: November 2005
                -Advance high-grade pre-cancer cells found in cervix: January 2006
                -LEEP procedure: January 2006
                -IC: January 2007

                Medications (Began Treatment 3/27/07):
                -Elmiron 100mg 3 x per day
                -Elavil 25 mg
                -Hydroxyzine HCL 10mg
                -Sanctura 20 mg 2 X per day (added 07/24/07)

                Weekly Instillations @ Doctor (Starting 07/31/07 instillations will be performed by self at home - Wish me luck!)
                -20cc Lidocaine 2% Plain
                -2cc Sodium Bicarbonate 8.4%
                -1cc Heparin (10,000 units/cc)

                Comment

                • #9
                  Originally posted by sandberg4 View Post
                  I do know to stay away from Dasani. It gives me great urgency.
                  Oh yes! I didn't like Dasani even BEFORE I started to have symptoms!! It just tastes funny to me.. and it's made my coca-cola, which just makes it seem fishy to me lol! I've had Evian before.. not recently though. And you are right, it is so expensive!

                  What about storebrand bottled water, like from Costco? Has anyone tried that before with success?
                  I am Jenny.
                  "Karma is affiliated with the Neopagan law of return or Threefold Law, the idea that the beneficial or harmful effects one has on the world will return to oneself."

                  Dx:
                  -UTI's and Kidney infections: Since 6 months of age
                  -HPV: November 2005
                  -Advance high-grade pre-cancer cells found in cervix: January 2006
                  -LEEP procedure: January 2006
                  -IC: January 2007

                  Medications (Began Treatment 3/27/07):
                  -Elmiron 100mg 3 x per day
                  -Elavil 25 mg
                  -Hydroxyzine HCL 10mg
                  -Sanctura 20 mg 2 X per day (added 07/24/07)

                  Weekly Instillations @ Doctor (Starting 07/31/07 instillations will be performed by self at home - Wish me luck!)
                  -20cc Lidocaine 2% Plain
                  -2cc Sodium Bicarbonate 8.4%
                  -1cc Heparin (10,000 units/cc)

                  Comment

                  • #10
                    The store brand water from Costco works fine for me, and you can't beat the price!
                    Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                    Wishing you happiness and good health, and all the best out of life.

                    Peace, Carolyn
                    ___________________________________________________

                    Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                    On the Beach with IC

                    Comment

                    • #11
                      I too have stopped taking my meds. Well except elmiron. I was told to stop the neurontin for sure while trying to get pregnant. I wish you the best.



                      Diagnosed with IC 3-30-2003

                      Flare ups 1 time a month lasts for days.

                      Comment

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