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Just DXed in the middle of flare up

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  • #1

    Just DXed in the middle of flare up

    Okay, I have been having pelvic pain since my son was born in 2004. I have had left ovary romoved due to over growth of simple cysts with regular occurance of rupture, I suspect the IC was aggrevated by that condition. I got my period when I was nine therefore have been warned of early menopause. I am VERY emotional, I can cry at any moment. My sex life is over (my poor husband goes weeks sometimes months without) I have no life anymore as it revolves around whether or not I have pain. I have not had the Bladder distention yet have only recently been clinically dxed by gyno. She wants me to test for 8 wks the Elmoron-100mg 3x a day and Atarx 25mg at bedtime, .25 Xanex 1x daily for severe flare up.(Doesn't seem to help) I am just so tired of trying to exlplain how I feel to doctors, I hate askeing for pain meds as they all think you are an addict when you ask. They just don't realize how bad the flare ups are. I have been researching like crazy and am making an appt with my doc to get a referral to a Uro I have dealt with this long enough I need results. My husband is very supportive (Thank Heavens) but still doesn't understand what I have been going through for 3 yrs. Any advice is well received.


    Frustrated in Fort Worth
    Mia Sowell
    miasowell
    miasowell
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    Last edited by miasowell; 05-08-2007, 03:20 PM.
    Mia Sowell
    Fort Worth, TX
    2 Kids
    Ethan (3)
    April (17)
    Husband Eric (Very Supportive)
    Clinically Dxed 04-16-07
    Symptoms Since 2004

    Meds:
    Elmoron 400mg 2x Day
    Atarax 50mg 1x Day
    Xanex .50mg 8 hrs As needed
    Vicodin 5/500mg 4-6 hrs As needed
    Xanaflex 4mg 1x Day
    Urelief Plus 6 hrs as needed for Bladder spasms
    Prelief as directed

    Tags: None
  • #2
    Sorry that you're in pain, but welcome. You're in the right place. Talk to your doctor about the xanax. A dosage of .25 one time a day is teeny tiny. I take .25 a couple of times a day...sometimes I take .5 if I'm particularly uncomfortable. It does help with my spasms and pelvic floor muscles.
    mom_in_ma

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    • #3
      to the IC network. I'm so sorry that you're having such a hard time but very happy that you found us. There is so much info for you here. I know that it can be hard to get pain meds but you'd be surprised there are some very caring dr's out there. I seem to be one of the lucky ones who has a uro who will give me some pain meds. He doesn't give me a monthly supply or anything but at the moment I'm in a horrible flare and called and got an rx called in right away.
      You mentioned that your gyn wants to try you on Elmiron for 8 weeks. It can take a lot longer for it to work than 8 weeks. I have been on it since Nov and haven't really seen any improvement from it. I have heard it can take 6 months or longer for some to see benefits from it. I would also suggest that you ask about Elavil (an antidepressent) or one in the same class as that has been the one med that has helped me the most. It is used to treat chronic pain and it also helps with frequency. We're all here for you and more than willing to try to answer any ?'s you have.
      Christine



      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
      I have tried every oral medication as well as rescue instills and DMSO.

      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
      Also proud mom to the best Bullmastiff on earth, Claus

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      • #4
        Thank you so much. It is nice to know I have a place to go. Since I have been suffering I feel like I am just whining to my doctor. I tend to minimilize it. I will make an appt in the morning.
        Mia Sowell
        Fort Worth, TX
        2 Kids
        Ethan (3)
        April (17)
        Husband Eric (Very Supportive)
        Clinically Dxed 04-16-07
        Symptoms Since 2004

        Meds:
        Elmoron 400mg 2x Day
        Atarax 50mg 1x Day
        Xanex .50mg 8 hrs As needed
        Vicodin 5/500mg 4-6 hrs As needed
        Xanaflex 4mg 1x Day
        Urelief Plus 6 hrs as needed for Bladder spasms
        Prelief as directed

        Comment

        • #5
          I don't really have anything to add, but want to you to the IC Network family.

          Warm hugs,
          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
            now we know

            Well... its got to be a relief to finally KNOW what the problem is.

            The next challenge..is to try an find the right combination of medication.
            Thats the tricky part.
            But it can be done..it just takes time & patiences.

            Try to balance the success of the medications weighed against the side effects.

            Diet is also very important. Start that today. Even though you may miss the coffee..they are other things, I love Peppermint Tea!

            Come here as often as needed.
            Share whats working...and whats not. Its helps us all...get through this.

            Please remember..it could be worse.
            And..the flare will pass..it always does.
            Quit ELMIRON due to hair loss
            Cystoprotek ROCKS!

            find me on FACEBOOK -
            search my email [email protected]

            Current Meds:
            AM Cystoprotek & ATARAX 50mg
            Dinner CYSTOPROTEK
            PM Elavil 25mg

            Comment

            • #7
              You might ask your dr. about a referal to a pain clinic. A lot of people see specialists in pain for their pain meds and other pain control methods.
              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

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