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Finally diagnosed

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  • Finally diagnosed

    Hello all! I made a post on this forum a few months back when interstitial cystitis was initially suggested as a possible cause for my abdominal pain. 7 months and two cystos later, I finally have my answer: definitely IC. On the one hand, I'm certainly relieved to finally have a diagnosis. For so long it's been a 'maybe' and I'm just glad that I finally know for sure. And I lucked out with a great doctor, too! However, where do I go from here? Luckily my last cysto with hydrodistension has taken the edge off of the pain and I'm feeling pretty good for the time being, however I have been warned that this relief could only last for a short while. I've also been advised to look into the IC diet but it seems so overwhelming that I'm not sure where to start.

    I'd love any advice, diet and cysto-related or anything at all! I'm very thankful that this forum exists and that I have a place to speak with others who know what I'm going through. Thanks!

  • #2
    Hello and welcome Im sorry you have to be here but happy that we all have this place to come to to share advice and support.

    Did your doctor start you on any medications? Or does he prefer to see how you do with the hydrodistention? After my hydrodistention and cystoscopy I had only one mild flare in 9 years. Some people do get a great deal of relief from them. The IC diet is a must for many of us. Some people find that no food bothers their bladder. Some people find that many foods bother their bladder. Alot of that is trial and error. There are some things that often will hurt my bladder such as, regular coffee ( I can have one weak cup of Kava, acid reduced coffee per day) Anything acidic like tomato products, citrus fruits. Most fruits except for pears and blueberries will hurt me. I cant eat aged cheeses except for a nibble now and then. Chocolate is a no no for me. When Im not flaring I can have some foods on the bad list and I'll be fine but if Im hurting I have to stay away from them.
    Diagnosed with IC in 1997. Currently taking Elmiron, Hydroxizine, Aleve, Ditropan, Glucosamine, Chondroiten, MSM Quercitin, Vitamin D, Probiotics, Co-Q 10. Also working on bladder retraining

    “The art of healing comes from nature, not from the physician. Therefore the physician must start from nature, with an open mind.”~ Philipus Aureolus Parcelcus


    • #3
      Yes, I forgot to mention medications. He started me on hydroxyzine and amitriptyline which I take each night before bed. We discussed elmiron but at the moment it's just too expensive for me to consider. When my pain started, I lost my job (not being able to go in because you're in too much pain will do that) and I haven't quite gotten back into the game yet so money's a bit of an issue. My doctor also suggested trying prelief, which I have just started using. It is very much trial and error at this point.

      I've been advised to keep a journal of what I eat to help with figuring out what foods are wrong for me. And of course all of the foods that I like are high in acidity so eliminating them is going to be a major diet shift. I already miss my coffee!