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New To the Boards,but not to IC

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  • New To the Boards,but not to IC

    Hello everyone!
    I have not logged on in a long time but I missed sharing with everyone so I'm back! I was diagnosed in 1993 after 3 years of wondering (along with my doctor) what was going on. Kept thinking I had a bladder infection,test would be negetive for bacteria...finally has the cystoscopy with hydro-distention and there was the answer to what I had was called iterstitial cystitis.
    At that time very few doctors ,nurses,hospitals or for that matter just about anyone ,knew what the heck it was! It was very frustrating and I even more devestated that after they told me what iI had ,the doctors also told me there was no known cure only treatments which may help.Heck they didn't even know what caused it!!!
    Well.that was then ,this is now and my life ,although has been quite a challenge has made me a much more determined person. I have done many DSMO treatments,bladder cocktails,I learned to cath myself,I was not a good canidate for Elmeron(had Ic 4 yrs before it was available),but I manage my pain much better since I started going to a pain clinic about 4 years ago,because my urologist suggested they may be a lot more helpful in pain
    management...boy was he right!
    I no longer take vicoden or percoset because these drugs have a short delivery time 4-5 hrs. I wa put on Methadone 5mg,3 x a day and also I take Ativan which helps with spasms and also lets me sleep more than 3 hrs. during night . What a difference!!! I still can have flares ,and have no idea where they come from! I have been on the IC diet for many years and that also helps a lot.
    One last thing I must tell everyone who has IC that I have found invaluabe is:
    Take time out when you are in pain!!! Get on that couch get a heating pad and learn that this will be the quickest way to get out of a flare or just calm down the pain.
    I fought this idea for years until I realized I do have a condition that will win if I push beyond where my body can go! DIscomfort is one thing I've learned to live with...but now after 14 yrs. I don't get in my own way when I really need a time-out!
    Hugs to All

  • #2
    I am so happy that you have found a solution that works for you. :woohoo: I know you are relieved. I hope this continues. It's awful to not have answers.
    TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
    My Helpful Hints for Home Instillation:

    Institute of Female Pelvic Medicine (J. Dell, My MD)
    Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
    I post to encourage and offer total support for rescue instillations.
    Find me on facebook: L. Clark Thomas


    • #3
      Abby. Glad that you're back. I know what you mean about over doing it. My hubby was just talking about doing all this work in the back yard this weekend. I told him that I can try to help though I don't know why he needs it when we have 2 teenage sons to help. However I told him that I don't want to do too much because then I will be flaring and will be miserable and will not be able to enjoy the rest of my weekend before having to go back to work. I'm happy you found something that works for you with your pain.

      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
      I have tried every oral medication as well as rescue instills and DMSO.

      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
      Also proud mom to the best Bullmastiff on earth, Claus


      • #4
        Back Abby...
        I believe to IC is trial and era.. Some things that work for one person may not work for another, you just have to find the right thing that works for you.. Well glad your back maybe you share some of the things that have helped your IC..


        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:

        Diet Reference Sheet:

        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.