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Struggling with ic

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  • Struggling with ic

    Hello everyone,

    My name is Julia and I'm located in vancouver. I been diagnosed w ic 9 months ago and all treatments help only temporarily. I had 12 bladder installations, a hydrodistention and just started amytriptoline. I'm in lot of pain and misry. What worked for people? Any suggestions?

    Thanks,
    julia

  • #2
    Hey Julia,

    I am on the same boat, trying to figure out what works. I have not even been diagnosed with IC yet. I have been having debilitating bladder pains. What I am doing is the Desert Harvest Aloe Vera (so far 5th week on it), acupuncture, and tons of relaxation and mediation. The pain has been getting better but I still have long way to go...

    I'm sorry I can't offer much help as I am so new to this disease, and I would also be interested in knowing what has helped others.

    Hang in there, you're not alone!

    hugs

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    • #3
      :welcome; To the IC Network.

      Having IC can be a real challenge. Are you following an IC diet? That can be a very important part of dealing with out disease. I was diagnosed 46 years ago and there are foods and drinks that I still must avoid --- but it's well worth the effort.

      If bladder instillations helped, you may want to consider learning to do them at home. Do you know what was in the solution instilled? There are some ICers who instill every day. What is your dosage of amytriptiline? Our doctor told us that it helps with pain by interfering with the pain receptors in the nerve system. My husband took only 10 mg nightly for arthritis pain and it definitely helped.

      The most important thing I can think of to tell you is that, while it can take some time, most of us find successful treatment options --- and most of us feel good most of the time.

      Sending healing wishes,
      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

      Comment


      • #4

        Hi Julia! This site has a great deal of information. Your physician/urologist will make suggestions to help you I'm sure. You may find that some things may work for you and some may not. I rarely post now as it has been a bit over 15 years that I was diagnosed. In the beginning I was very strict with my diet. I started using Prelief with my meals. Eventually I was able to add many foods back ( in moderation, of course) and still using the Prelief. I have been on Elmiron since diagnosed and it has helped me although there is controversy about it now due to an eye issue. I have had my eyes checked every 6 months and all is well. My gynecologist recommended Estrogen cream to thicken my vaginal walls so as not to feel the discomfort as much. The combination of the 3 has helped me. I tried hydroxyzine but it wasn't helpful for me. Yet others do well with it. Everyone is different and unfortunately there is not one cookie cutter remedy; sometimes it is trial and error. Physical Therapy & Pelvic Floor Therapy helps certain people also. I was on this site daily for the first year or two of my diagnosis. As things improved I check in once in awhile. I just wanted to respond as I remember being newly diagnosed and felt helpless. My urologist is the one who told me to get on this site. I'm glad I did. I found a lot of support, and had plenty of questions. Read through topics and success stories. My improvement was slow, but it did eventually come. I am wishing you well, a great deal of positivity, and hoping you find the relief you need.

        Comment


        • #5
          Thank you guys. I tried alovera and it made things worse. Diet didn't help. Tramadol helps somewhat. No benefit from amytriptoline yet but I'm at a low dose of 10 MG. My urologist said he doesn't know what to do and reffered me to another urologist. So frustrating.

          Would like to hear what helped people?

          Thanks u all for the kind words. Can't wait to get some relief.

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