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  • #1

    My story

    Hi,
    My name is Tabitha. I have had IC for about six years now. My IC was brought on more than likely by Chemo I had for breast cancer six years ago. I have pretty much been on DMSO treatments which seem to help alot because I get good remissions though each one seems a little shorter. My last one has lasted for about four months. I am now entering into another flareup. I have a great uro who works with me but she isnt always easy to get a hold of so tomorrow I will talk to my GP and see if she will order my treatments. We will see. It is nice to have someone to talk to. My symptoms are not nearly as bad it seems as some. I dont go to the bathroom more than 5 or 6 times a day during a flareup and rarely at night. I still hate this disease and even though my pain is not as great as some its still my pain and it is still terrible. Thanks for listening and glad I found this board.
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  • #2
    Hi Sweettabby and welcome!!! Sounds like you have already been through quite a bit with cancer and all. I'm glad to hear that your DMSO treatments send you into remission. I hope that the next one provides you with one as well. Keep posting, welcome to the family!

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

    Comment

    • #3
      Hi Sweettabby & A Warm Welcome to you.
      I'm still a "newbie" here and just trying to learn so I don't post much. Even though I can't offer much info, I can & do pray daily for a solution to this disease that affects so many lives.
      Again, Welcome to a group of nice ladies that I feel can help you with suggestions from their own experience. hi
      Carley

      They that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.---Isaiah 40:31

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      • #4
        Welcome glad u found us! Sandra grouphug grouphug

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        • #5
          Welcome to the IC Network family. I have a friend who also feels her IC was caused by a combination of chemo and radiation therapy.

          I have also been on DMSO for the past several years. Right now I am taking a break from the DMSO in preparation for taking part in a study of a new treatment for IC.

          When I first started DMSO I went for eight weekly instillations, then moved to a once a month schedule. This has worked out very well for me. You might consider regularly scheduled treatments instead of waiting for symptoms.

          I do hope you feel better very soon.

          Sending healing thoughts,
          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

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          • #6
            Thanks everyone. I intend to this time ask my doctor for maintence treatments which maybe will prevent these stupid flareups. I know from looking at this board that my symptoms are no where near what some of you experience, but to me they are horrible. I really want to try the natural stuff rather than keep going for the DMSO. Right now Im trying the AloeVera and I have thought about trying the Bladder Q which I saw yesterday. I figured this was a good time. Does anyone know how long it takes for these to kick in? Im a chicken for the pain so I will probably start with the DMSO and continue to take the natural.

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            • #7
              Welcome, sweetabby, and glad you found us!
              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

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              • #8
                Welcome Tabitha, glad you found us and keep posting and let us know how you are doing.
                Hang in there , There is hope.
                There is hope. Prayer works.

                Love, Debbie

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                • #9
                  Hi Tabitha and I am also glad you found this great IC family network, the gals here are so helpful and supportive, there are also a few guys on it as well. It does sound like you have had a rough time having had chemo. Do hope that you can get some relief from your IC and feel a little better, once again welcome great to have you here, hugs Iris hi grouphug
                  Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

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                  • #10
                    Welcome to the IC family, Tabitha. Like you, I don't usually have severe IC symptoms, but as you know, when they do flare up, it can have an impact on overall quality of life. It's good that you do have a urologist that is helping you with treatments, etc. I haven't tried the aloe vera or bladder Q. If you find that it helps, definitely let us know! So, based on what you've said, you tend to experience more pain than urgency/frequency?
                    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

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                    • #11
                      Well yes mostly. The pain is anywhere from an aching in the urethra to a burning. I do have some urgency but nowhere near what some of you are experiencing. I rarely get up at night. Its mostly during the day. Yesterday was great. Almost symptom free. However, I never count on anything because one symptom free day means nothing. Also Im not sure that food really affects my IC that much as when Im in remission I can eat anything and everything and never have a problem. My IC is very weird.

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