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A lot of questions!

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  • A lot of questions!


    Reading around on this site is giving me a terrific education! I do have some specific questions, and I was hoping some of you kind people might be able to answer them.

    My urologist has not formally disgnosed me with IC; he still says there's a chance that my bladder can calm down from the inflammation I've suffered the past four months. Nonetheless, I think it's time to see a specialist. I am in Georgia, so I'd love to hear any recommendations for doctors and clinics where I am. I'd also be very interested in knowing, simply, who are the best doctors out there today, regardless of geography. I'm willing to travel for the best care.

    I had a cystoscopy and hydrodistension under general anesthesia in January, and my doctor says my bladder looks fine, that it has no visible signs of IC. He tested capacity and did biopsies, and everything was good with those as well.

    Presently, I am taking Ditropan XL 10 mg once a day, Zyrtec in the a.m. and Singulair in the evening. My main complaints are frequency and burning when it is bad. Most of the time, it's a dull and sometimes even a tolerable sense of pressure in my bladder. The drugs I am taking do help me. Going on the IC diet very strictly also brought me relief, but I had what I guess was a 2-3 week flare when I got careless about what I ate. I was able to bring the flare under control with Pyridium, some Ibubrofen, going up to 15 mg of Ditropan for a day, and getting back on track with the diet. I've just begun taking quercetin; I also went back on the glucosamine with chondroitin my orthopedic guy suggested for an old shoulder injury. This time I was careful to get some that had no added postassium to it. My urologist has offered me Elmiron if I'd like to take it, but he tells me that it doesn't work for everyone (as all of you already know!). In fact he thinks that it might not help me at all, given that I have no pinpoints or ulcers on my bladder. I'm reluctant, naturally, to take Elmiron if I can manage my condition without it. Any thoughts about this?

    While the Ditropan helps me, I hate the side effects (dry mouth and the inability to work up a sweat). I'm wondering if switching to Oxytrol would be wise, so I'd love any information any of you might have on that.

    One final question: I am a Pilates instructor, but my bladder problem has made it impossible for me to continue to teach the 6 classes a week I had been teaching last fall. I'm trying to do 3 classes a week, but I cancel those if I'm feeling really dreadful (as I was during this last flare). Does anyone out there know if Pilates is friend or foe with this disease? What about yoga?

    Yes, I have a lot of questions, I know! I deeply appreciate any information you can give me! Donna, I know you'll tell me to make sure I'm doing the diet...I am, and, you are right: it does seem to make things better!!!

  • #2

    First off, you may want to try controlling pain with something like Tylenol instead. Many ICers report that the metabolites of ibuprofen that are excreted in the urine are very irritating, and can actually prolong a flare. It's possible that this is not the case for you, since we're all different, but during the next flare you may want to try it and see if it makes a difference.

    Second... IC doctors. The ones that are most mentioned on this site as being GREAT IC doctors are: Ragi Doggweiler in Knoxville, TN; Robert Evans in Greensboro, NC; Robert Moldwin in New York, NY; Phillip Hanno (not sure of location); C. Lowell Parsons in San Diego, CA; and Christopher Payne at Stanford University in the Bay Area of California. These doctors are all world recognized IC experts.

    If any of you out there have doctor recommendations, please feel free to chime in here -- there is no way I can possibly remember everyone who has come highly recommended.

    Hope this helps

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. 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.


    • #3
      Dr. Grady Bruce-- Round Rock (near Austin) Texas - IC Expert. My regular uro. sent me to him. But even Dr. Bruce couldn't help me! Oh well.


      • #4
        I hear that most people with IC cant handle pilates. Some cant even go running. I just bought an ab lounge machine that works wonders. I dont have to strain my back doing situps anymore!!! i have to start running again when the weather gets nicer here in nj.
        I hope you find a great dr soon! I wanted to start taking Elmiron right after dxd... my uro told me that It doesnt work and started me on instills. Those didnt work so I switched uro's and started elmiron. He said it is a possibilty it wont work.... well since then I've seen a difference taking it. You never know untill you try!
        Good Luck


        Dance like no one is watching
        Love like you've never been hurt
        Live today like it's your last

        Dxd with IC in June '06


        • #5
          Hey, welcome to the boards!
          I had my hydro/cysto done and I didn't show any pinpoints or ulcerations either, but my urologist went ahead and tentatively diagnosed me with IC based on my symptoms. Since then, through diet and stress management, I've gotten much, much better. I've also been taking Elmiron since then, but the majority of my improvement was within the first month and I've hit a plateau since then. Elmiron can take months upon months to work, so for me it either just hasn't kicked in yet, or it isn't going to. Even with insurance it's expensive as all get-out. Personally, I'll keep trying it for another four months, but if I don't get past this level by then I plan on ceasing it. Some people really have benefitted from it, and the side-effects are pretty rare (though nobody likes thinking about potential hair-loss).

          As for pilates, I've not tried it, but I do yoga almost every night. Early on it was one of the few things that helped me with the pain. Each person is different, and if you love what you do, then I think it's worth doing whatever it takes to get back to that point.