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Just Diagnosed and confused!

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  • Just Diagnosed and confused!

    I was thrilled to find this website with so much information. I was DX in March. I have started RIMSO tx once a week for 6 weeks. The cocktail is heparin, lidicaine and sodium bicarb. I'm not sure if it's doing anything but I'm game to try it. I had been begging my ob-gyn to send me to a urologist since last February due to urgency, frequency and some incontinence. Finally in September I was seen and they tried me on three different medications ( Sanctura was one) none worked. I just figured there was nothing anyone could do and was going to suffer in silence. They had told me to come back in 6 months. Due to a pain in my right side I saw a surgeon who sent me back to the urologist to check out the pain. He thought it was connected to the ureter. They did a bladder distention and biopsy in late February. Dx was moderate to severe IC. I have started to see a nutrionist/homopathic DR. to help me with diet. Since the dx I have been on a very strict diet. They believe I have a candida yeast infection. My diet is restricted from all yeast, sugars, processed foods, etc. Coffee has been the hardest! I drink 1-2 cups low acid coffee day. All in all I have seen no change due to diet or treatments. I hope it is just that it all needs more time. My goal is to manage it and not let it manage me! Any advice???

    DX: IC,IBS, migraines, heartburn
    Medications: Topamax,25mgs 4 in am and 3 in pm
    propanerol 10 mgs 1x per day
    arthotec, 75 mgs 1x per day
    nexium, 40 mgs, 2x per day
    fiorinal as needed for migraines
    grapefruit seed extract 2 per day
    nystatin 1/4 tsp per day
    treatments: rimso treatments 1x per week for 6 weeks

  • #2

    You are right. This is a great site for people with IC. You will find a lot of support and tons of information. It seems that most poeple are food sensitive. I know there is information on the IC diet on this site. You might want to check it out.

    There are boards for rescue instillations and also DMSO under Treatments for Moderate IC.
    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

      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.


      • #4

        Hi! Nice to meet you. I know this sounds bossy, but I would give up the low acid coffee and any herbal teas until your symptoms are under control. After they are under control for a little while, then reintroduce and see if you can tolerate different things. Try one thing in a 2 day period, just so that it doesn't get confusing.

        I went through all that and finally had to accept that I could not do any kind of coffee. I held onto it for months while I was still in pain. I felt a huge difference after I gave it up completely. I don't know if that will work for you, but good luck.

        Diagnosed October 2006
        Monthly installations


        • #5
          Thanks for the welcome! I am typing challenged too, actually I am challenged by the compter in general, so all these threads and things to click on take some getting used to! Thanks for the info on the DMSO site. I will check into it!


          • #6
            Thanks for the welcome!


            • #7
              Thanks for the advice. I appreciate it. I am having the hardest time giving up deacf coffee, but your probably right. I need to do that next. It's so frustrating because I have so few things I really enjoy. I love coffee! I didn't even mind switching to decaf. Not having any will be hard. I love chocolate too but I didn't mind giving that up any where near as much. My entire diet is basically rice, steamed vegtables and chicken or fish. That's it. I haven't notice that much of a difference since I changed my diet (7 weeks). What's interesting is I've only lost 3 lbs! What else can I drink? Thanks for you advice. I'm new at this and confused with all the diet limitations!


              • #8
                I would recommend just water for now, until symptoms are gone. Some people can drink hot water and sugar but since you can't have sugar I am not sure if you can have honey. Also, I don't know if you cook much, but if you buy flour that is pure flour no preserves then you can make yummy things like tortillas. I really feel for you not being able to eat much Ooh maybe you can eat some potatoes both regular types and sweet potatoes

                Hope things get better


                • #9
                  Thanks for the advice

                  Thanks for the advice. It has been difficult trying to figure out what I can have and what I can't have. I was just diagnosed and just started treatments. Nothing seems to make a difference. I've been on this diet for 7 weeks and it hasn't really made a difference. Someone suggested an IC friendly version of coffee made out of fruits. I am going to try that.
                  Keep your fingers crossed!!