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  • Overwhelming


    I was just diagnosed a couple of weeks ago with IC, though I had had symptoms for many years within the same healthcare system. I'm a bit frustrated about that, but I'm trying to let that go.

    It's very hard to know where to turn with the dr's recommendations, and website recommendations. Today I did have a good chat with a local contact mentioned on this site, and it felt like the FIRST time that I had spoken with anyone who actually had a sense of what I've been going through. She had many good suggestions. I actually found out the Elmiron is affordable, which my doctor had said was not the case.

    My doctor (probably won't choose to stay with her, and my insurance will change) recommended six hour doses of Extra-strength Tylenol and Advil, and the Advil is just too hard on my stomach.

    I'd be interested in knowing how people cope with the pain when it's most intense and when it's ongoing. I'm completely open to anyone's thoughts. I need to stay alert for work, so I'm trying to balance that with keeping the pain under control. I've also loved to do sports and camping . . . I know that some people have this where it's manageable, but what helped most in the beginning?


    Diagnosed 6/4/07
    Taking Tylenol and Alleve, Vicodin only at night if really bad,
    Changing diet -- oooh no more chocolate
    Using heat (best help)
    Trying Glucosamine (will try the other supplements one at a time to see what helps)
    Also have IBS, migraines, allergies
    Diagnosed 6/4/07, also IBS, migraines, allergies,
    hysterectomy, previous fibroids, cysts.

    Help measures in process -- hope to start PT, etc. Main pain meds: HEAT, Tylenol, Alleve, Working on diet!

    Cold infusion of Marshmallow Root tea 2x day, Citrus free Quercetin 2x day

    I am not my illness -- it's just a facet, I aim to enjoy life and pursue my dreams! I hope it makes me a more compassionate human being.

  • #2
    I'm sorry that you were just diagnoised but I'm happy that you found us, this really is a good website and support system.

    I work full time in an office setting and I find keeping a heating pad always plugged in at my desk can be a life saver. It is really nice to be able to use that on my pelvic region or my back if I'm really hurting. I also will keep at least one vicoden with me at work so if the pain gets too bad I at least have the option to take one.

    It's so hard to work full time with horrible pain, I know, I hope that you get a good treatment plan in place and start to feel better soon.

    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


    • #3
      HI Waves!
      I'm glad you are here too........sorry you have IC though!
      It sounds like you haven't tried Elavil? It's a prescription and really helps with pain, urgency and frequency. Have you tried Azo for pain? It a bladder anesthesia....really helps....and is over the counter.
      There's lots of info here on this site.....Hope you find some help! Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo:


      • #4
        Hi Waves, and welcome!

        I was diagnosed by a doctor who doesn't believe in giving pain meds for IC, so am pretty much left to self-help treatments when flaring. These are my strategies for coping with IC:

        Increase my water consumption (Untreated water!)
        Eat only IC safe food & drink
        Decrease my activity
        Azo or Uristat (OTC bladder med)
        Sitting in a warm bath
        A bottle of cool water to rinse with after urinating (helps with the burn)

        I'd have to say the thing that helped me the most in the beginning was the IC diet. Also this site, where I learned most of my self-help tricks & lots of support from really nice people!

        Hang in there, -for most of us living with IC does get better!

        "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."


        • #5
          Thanks to everyone for responding

          Thank you to everyone for the support -- very hard to go through alone when most people have never heard of this.

          I have tried some of the suggestions, but right now the diet is the big challenge for me. Nutrition hasn't been a strong point for a few years (OK, really more) so I'll work on that. Most of the trigger foods are now gone from the house, so that makes it easier I did see a naturopathic doctor/nutritionist, but I'm finding that even some vegetables must be more acidic than others -- had a bad reaction to beet greens. He emphasized seeing the foods I choose in a more positive life, as healing -- just hard when I want a triple shot latte, chocolate, orange juice, chocolate . . .

          My less-than-great diagnosing doctor had said that the Elmiron (spelling?) wasn't affordable, but I've learned that it is, through connections from this website. So, I've asked her to give me a hard copy Rx, so I can get it!

          The Azo, Pyridium is too harsh on my stomach, so that doesn't work. Much of my pain is general pelvic pain with some sharp pain. With IBS, sometimes it's a bit hard to tell what's what.

          The diagnosis explains many past physical problems though.

          Again, thank you to everyone.
          Diagnosed 6/4/07, also IBS, migraines, allergies,
          hysterectomy, previous fibroids, cysts.

          Help measures in process -- hope to start PT, etc. Main pain meds: HEAT, Tylenol, Alleve, Working on diet!

          Cold infusion of Marshmallow Root tea 2x day, Citrus free Quercetin 2x day

          I am not my illness -- it's just a facet, I aim to enjoy life and pursue my dreams! I hope it makes me a more compassionate human being.


          • #6
            Waves at the beginning the diet is a great way to try to get it under control. Sounds like you already made steps to try to get it under control. Elmiron is good for some people but it does take awhile to work so you will have to give it time.

            I love chocolate but that is a fast way to irritate the bladder. Tea is my worst enemy. You will find things immediately and than you will find things you can eat but not to much of it.

            Hope you start finding improvement in your health by what you already started. You are already on the right track, hang in there.

            Take care, Trishann


            • #7

              I think I am one of the odd balls. I have a lot of symptoms but pain is not on the list. Well at least it is not daily. I know there are lots of people here that have horrific non-stop pain. I so admire them. Some of them are awesome. I don’t know how you do it with daily pain.

              Just remember, there is power in number. You have lots of support here.
              Glad you have joined us.
              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