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Not sure if this is where I ask

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  • Not sure if this is where I ask

    I have a couple of questions, First is that I was just recently diagnosed a couple weeks ago with IC and Fibromyalgia, however I have have the symptoms for quite some time. I have started taking Elmiron and trying to watch what I eat until I get the cookbook to go on the diet fully. However, I am noticing that I am having quite a bit more pain and frequency. I feel like I am getting worse, even though what I have read says that you shouldn't get worse. Is this normal or possible? Also, every time I put in a tampon, I feel like the pain is horrific. Is this normal???
    (was dogbite5)

  • #2
    Some people don't respond well to Elmiron, and I've heard a few say they felt worse on it. You might discuss that with your doctor.

    As for tampon use, many ICers just cannot use them at all because it is too painful. I can do it since I only need low absorbancy ones, but I have to be VERY careful about how I insert it, because if I hit my bladder.... ooooohhhhh.... bad....


    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. 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.


    • #3
      I use playtex slmifits or tampax slender regulars-SPARINGLY. I mostly have to use pads because my pfd is so bad. As for elmiron, it made me very, very sick and didn't help. Elmiron is wonderful for many patients but it can take up to 6 months or longer to work!

      IC diagnosed officially via cysto/urodynamics 1/26/07

      Grade II Endometriosis diagnosed via lap 12/11/07

      "Fall down seven times, Stand up eight."

      "Life is a tragedy for those who feel and a comedy for those who think."

      Current Treatments:
      Interstim Since 5/25/07!
      Birth Control


      • #4
        OW, tampons -- the last time I put one in, it set off a flare that has so far lasted two years and a half, and is only now beginning to improve. I would stay away from them, even if it means you miss out on doing something once in a while.
        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


        • #5
          I agree with Sarojini - there is a small group of Icers whose symptoms get worse on Elmiron. I think it would be a good idea to talk to your doctor about it - just in case that's what's happening.

          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


          • #6
            If you have only taken Elmiron for two weeks don't give up. I used to think that I was getting worse and that it wasn't helping but I gave it time and it has really helped me. I would never go off of it now.


            • #7
              This is random but if you are also on ibuprofen, which I was before I was diagnosed, it can cause a flare. Also, Elmiron can cause stomach upset like diarrhea that can cause a flare. If you take off the capsule and just take the medicine, you may feel better. Worth a try.

              Diagnosed October 2006
              Monthly installations