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I am very new to posting and hope you can help me.

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  • I am very new to posting and hope you can help me.

    I am new to IC and have not been diagnosed but have the symptoms for the past 6 weeks. Have had frequency for a few years but suddenly got worse and pain in pelvis one early Sunday morning in August and had awful pain in bladder area. Went to urologist said I did not have infection, gave me Sanctura SR which landed me in the hospital with heart palpitations. I was given vicodin and sent home. Went back to urologist (heartless urologist) who scheduled me for Urodynamics end of September, so I am supposed to sit here with no pain meds until when? I decided to go to urologist #2 who did urodynamics and cystoscopy same day (that was fun) and said nothing is wrong must be neurological. Went to neurologist did mri's and nerve test, no nothing wrong there. Went to gyn dr and she said sounds like IC and here is a RX for Elmiron but I am so scared to take it because it is a blood thinner and I am prone to nose bleeds especially this time of year when the weather gets cold and dry ( I have very sensitive nasal membrane) due to over use of nasal sprays in the past, so just don't know what to do. I have tried Elavil but it gave me heart pounding and skipped heartbeat but it DID take away the pain, cannot win. Xanax takes the edge off but how much of that can I take? I am waiting to see a pelvic pain specialist ( she is a urogyn) but that is Nov 10th. I will take any suggestions please. I am ultra strict on the diet and take prelief if I think anything may be acidic . I am also taking Cystoprek but its so expensive, God! Thank you everyone for all your posts it is so comforting!

  • #2

    Sorry to hear about all of your frustrations. I can relate. I was just given a prescription for Elmiron today by the IC specialist I saw. I don't remember seeing anything in the literature that it is a blood thinner. That would be a disaster for me since I suffer periodically from colitis.

    I have never been on meds so this is scary for me too. He did tell me because we caught the disease at such an early stage I would have my best chance of controlling it if I took the meds sooner rather than later. I threw caution to the wind and took the first one right at the pharmacy. It scares me too but I guess I'll give it a try for 6 months and see what happens. Please keep us posted as to what you decide. Thinking of you!



    • #3
      Thanks for replying. I am going to wait until I have a talk with the specialist on Nov 10. I know the pharmacist told me there is a chance of nosebleed because it is a form of heparin which is a blood thinning agent. So read the literature. We have to look out for ourselves in this world. Its a rare side effect but hopefully won't bother you. I am so paranoid about all these drugs. Thanks for your reply and hope to talk to you again soon. I know that Elmiron takes awhile to work. Did the dr give you anything else while you wait for a fix?


      • #4
        No, nothing else. I don't tolerate the rescue installations. They aggravate the urethra and then caused a flare a few days later. He said it was best to avoid them. I'm hoping for the best!!!


        • #5
          I should also mention that I am doing accupuncture that is administered by a GP. I also do weekly massage therapy to reduce any stressors. At least I have an excuse to pamper myself a bit now


          • #6
            Elmiron is a super mild blood thinner... my gynocologist didn't even have me come off of it for surgery, and I had no extra bleeding whatsoever.
            Symtoms started July 2010.
            Severe pelvic floor pain only.

            2 time PT graduate!
            In medical remission since August 2011; able to eat and drink anything I want currently.

            IC meds:
            200 mg Elmiron in the morning
            100 mg Elmiron @ night
            Macrobid after intercourse

            03/11 07/11 01/12
            If at first you don't succeed: 07/26/2013!