Announcement

Collapse
No announcement yet.

I have suffered with EC for at least 15 yrs

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • I have suffered with EC for at least 15 yrs

    It is good to finally find a community of people that know the dibilitating pain this condition causes. I have suffered with EC for at least 15yrs but wasn't diagnosed until 3 yrs ago. Once my condition had a name I thought this is great now they can fix it. But as I am sure you all have experienced the doctors are clueless when it comes to managing this condition. I have one ulcer, which causes me relentless pain. I have tried instillations, steroids, I have had the area cortorized more than 5 times and I've tried all types of meds and now even pain medication doesn't help. I have also tried some natural approaches but to no avail. The only thing that I have found that is easing my pain and discomfort is alkaline water. not the kind you buy at the store but the one that sits on your kitchen counter and you actually filter it. I guess my urine is not as acidic when I drink the water so it eases the burning and discomfort. It would be great if we could all share anything that has helped in anyway. The best place to hear ideas is from others experiencing the same sickness because the doctors don't have an answer. God Bless you all.
    Last edited by ICNDonna; 07-19-2009, 05:36 PM.

  • #2
    I'm so sorry you have EC. We don't have many with EC on the forums, but hopefully some will respond.



    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


    • #3
      To the ICN
      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


      Link to Patient Handbook:
      http://www.ic-network.com/handbook/

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Comment


      • #4
        Hello and ... We are very glad you are here.
        Sharon

        Shopping??? Did someone mention shopping? I'll get my hat... ;-)

        Where I can be found most days.



        Link to the ICN Patient Handbook:
        http://www.ic-network.com/handbook/

        Link to the IC Diet:
        http://www.ic-network.com/diet/


        IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

        Comment


        • #5
          Hello English. I am happy you found this site. I am ashamed to say I do not know what
          What EC is. I did not know what IC was until I relized I have it two years ago. It just goes to show no matter how old we are we learn something new all the time. Sending all my best wishes. Ziggy

          Comment

          Working...
          X