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  • Hi, I'm new

    I am also a male who has recently been diagnosed with IC. I am 23 years old. For almost 2 years I was told that I had prostatitis. I finally went to a different urologist, who immediately questioned my bladder as opposed to my prostate. He performed hydrodistention and told me that I had a very severe form of IC. He said that my bladder capacity was about half of what it should be, due to severe inflamation. I am now on Elmiron (100 mg) 3x a day. I have been on it for 2.5 months and haven't noticed improvement yet, but I am trying to be patient. Have any of you not been helped by Elmiron?

  • #2
    Hi Shane:
    Hey, we're in the same state! I'm looking to start a support group here and wondered if you were interested in participating? This disease can take its toll, as I'm sure you've read on some of the message boards. If you are interested, please contact me at [email protected] I'm sure we can pass some valuable info on to one another.

    I've been on Elmiron since March 2000. It takes about six months to feel any improvement, so be patient. Are you taking any other meds? Elavil and Vistiril are also popular in conjuction with Elmiron.

    It's great to have you here and I hope you find this site as invaluable and supportive as I have! [img]smile.gif[/img] Keep in touch>Tina
    What you are is God's gift to you...What you make of yourself is your gift to God.

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    • #3
      Welcome Shane:

      I am with Tina, Elmiron takes time. I have been on 300 mg for one year. I am increasing to 600 mg a day. I just started to notice an improvement so please be patient. I am so glad you have a correct diagnosis, now you know what your dealing with there is so much information available. Knowledge is our best weapon.

      Wishing you good days,

      Lisa <img src="graemlins/hi.gif" border="0" alt="[hi]" />
      "The supreme happiness of life is the conviction that we are loved." Victor Hugo

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      • #4
        Hi Shane,
        So sorry to hear about your diagnosis. You'll find a ton of support and information here on the ICN. I'm glad you found us.

        Let me ask first if you have tried elminating common food triggers from your diet? If not, I'd definitely suggest you consider it. I was quite surprised to find out how much food could effect my bladder when I was first diagnosed. Between avoiding diet triggers, taking Elmiron and Ditropan XL and going through physical therapy for my pelvic floor dysfunction, I got on the road to recovery. Now I'm doing great, with little to no symptoms most days. You can read more about my story by clicking on the link in my signature line.

        You might also want to chat with your uro about trying some other medications while you wait for Elmiron to work. Lisa is right - it can take a while to kick in. Research indicates that the longer you are on it, the better and better you feel. I've definitely found that to be true, with this year being the best yet for me.

        Hope this helps. Feel better soon!
        Melanie J.
        "The sun shines not on us, but in us." John Muir

        Living a happy life in spite of IC! http://www.ic-network.com/patientstories/melanie.html

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        • #5
          Welcome Shane <img src="graemlins/hi.gif" border="0" alt="[hi]" />
          I am 22 years old and have also had IC for a little over 2 years. I was on Elmiron for 10 months and had no improvement. That is totally not to say you will not, many people on this board have had significant relief and can better talk to you about it. I have been on Detrol, Ditropan XL, Pyridium, Neurontin, pain medicines, pain patches, nerve blocks, Interstim, Elmiron, Atarax, Elavil, and anything else you can think of that I haven't mentioned. I guess I am one of those tough IC patients the Uro's don't like because they can't do anything for me. I am currently back in college now because I have finally been given relief after being bedridden for over a year. I was seen by a Dr. in Portland, Oregon who introduced me to MSM(DMSO2) and I was given it through IV's and orally for about 2 months went I went into complete remission. I was finally living a normal life, but my dumb self stopped taking the MSM and now I am feeling pretty bad again. Not as bad as before, but I am back on my medicine and I hope to be feeling better soon. Again, welcome to the board....we need more men to talk with and understand.

          Hugs,
          Alisha

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          • #6
            Shane,
            I would like to tag on to the reply of Alisha's. I do not have ic, but I have a son who "had" severe symptoms of ic. He was actually debilitated with severe symptoms of ic. He had to quit college and could not work for about 3 years. He is now in complete remission from his ic symptoms by taking the oral form of dmso2 and also from doing the instillations of dmso2 which is actually dmso with msm in the solution. I guess you could say my heart goes out to the young males who have this disease as I watched first handed what this ic can do to a young man's life. THERE IS HOPE !! The question of Elmiron...my son was taking 900mg a day for about a year and a half...some benefits but not all that much. It was the dmso2 that gave my son his
            health and life back. I wish you well...any questions feel free to email me :
            [email protected]
            Brenda
            My son was diagnosed at age 21, I took him to about 5 doctors who also thought he had prostatitis, then, finally, one Urologist tested his bladder with a cysto/hydro..and found an inflamed bladder with little red places around it. He is now 25--back in college and working part time. You can get better!!

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            • #7
              Momoficson:
              You are too cool! [img]smile.gif[/img] Tina
              What you are is God's gift to you...What you make of yourself is your gift to God.

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              • #8
                Dear Shane,

                Welcome to the ICN! [img]smile.gif[/img]

                I'm almost 26, but was diagnosed 5 years ago. Elmiron, along with sticking really closely to the IC diet have done wonders for my IC symptoms. Elmiron doesn't work for everyone, we're all quite individual, but I would hang in there for a while longer with the Elmiron because it does take 3-6 months in order to become effective in some people. I was on Elmiron for 3 years, but it took me a good 3-4 months in order to finally get some relief. I know it's frustrating, but please hang in there!

                Also, have you looked into the IC diet? I eliminated acidic, spicy, caffeinated and carbonated foods and beverages from my diet, and it made a huge difference.

                Good luck and take care..

                Alexa [img]smile.gif[/img]
                My story of healing and hope http://www.ic-network.com/patientstories/alexa.html

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