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Recently diagnosed and trying to learn my triggers

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  • Recently diagnosed and trying to learn my triggers


    I’m happy to find a place where people will understand what a strange and unpleasant experience this has been. I was diagnosed with IC about a month ago following a prolonged period of symptoms that were almost, but not quite, UTI symptoms. I was put on several cycles of antibiotics unnecessarily, including one that it turns out I have an anaphylactic allergy to (that was fun!). The pandemic made that whole process take longer than it would have under normal circumstances, I think, because my (several) initial doctor appointments were by e-mail to avoid in-person contact. Had I had an actual urine test to begin with, I probably would have been diagnosed sooner or at least not prescribed every antibiotic that exists. Several tests later, here I am.

    I am no stranger to chronic pain conditions. I started having debilitating Fibromyalgia symptoms nearly a decade ago and got that diagnosis after several years of eliminating every other possible diagnosis. It took hospitalization, heavy medication, and then a lot of therapy to get me to the point where I was mobile again and off all pain medication. Remission had lasted almost an entire year, and then these IC symptoms started. Honestly, I feel like it’s just Fibromyalgia in a new (and more annoying) part of my body. Before, my pelvic area was the only place that didn’t hurt! I guess it wanted a turn.

    I’m about three weeks into a strict elimination diet. I also already have Celiac disease, so I’m pretty well-versed in reading labels and cutting things out of my diet. It’s going pretty well except for not realizing I should look for citric acid (whoops). After about four days on the diet, my symptoms became less pronounced, and the flares I’ve had since have been relatively mild and clearly related to stress. I am sure that the stress of a variety of things in my life right now compounded by the stress of pandemic-related issues is what triggered this problem. My body likes to turn stress into pain. I’m hopeful that by controlling my diet and trying to manage my stress (hard under the circumstances!), I will be able to get this mostly under control. My Fibro only flares up one or two days a month these days; if I could get the IC to that level or less, then I feel like I could live a pretty normal life. If that’s not possible for most, allow me to be blissfully ignorant for a while longer, please.

    Because of all the antibiotics, I am concurrently avoiding sugar and starchy foods to get my gut back in line since antibiotics have led to yeast overgrowth. I should be able to start adding those things back in moderation soon and at least have a little variety. I’m trying not to think too hard about how I’ll eat with the Thai half of my family, what the point of living in Southern California is if I can’t have most Mexican food, how much I enjoy a good red wine with dark chocolate, or how to celebrate Robert Burns Night without a nice haggis doused in whiskey (we’ve already de-glutenized haggis in my family, for goodness’ sake!). I’ve been down this road before to some degree with Celiac, but with Celiac it’s 100% clear what I absolutely cannot eat. With this, I have to test everything, and it sounds like what might be safe one day might not be another if I’m under extra stress or have already irritated my bladder in some way. I’m not a big fan of the unknown.

    I do have some questions.
    1. As of right now, I was thinking I’d do the elimination diet for a month and then start adding potential triggers back, starting with the least likely ones. Is a month a long enough time, or is my bladder probably going to still be too sensitive to really determine if it’s a trigger or simply a reaction to an already inflamed/irritated/sensitive bladder? I am very bored on this diet at the moment, but I will take boredom over pain any day.Are there any potential triggers that you think I shouldn’t even bother to reintroduce in the first year or so (or ever)?
    2. Are there any potential triggers that you think I shouldn’t even bother to reintroduce in the first year or so (or ever)?
    3. Do you have any positive stories to share about recovery? I’ll be wading through the forums as well, but I have to be careful to avoid the truly scary posts, at least at first, because I know enough about my chronic pain reactions to know that I am very suggestible. If I read enough about IC pain, I’m likely to start feeling symptoms just because they’re on my mind! But stories of recovery, remission, or even just getting through the day successfully would be a great way to refocus my attention. If you have had a victory, even a short-lived one, and are willing to share it, it could go a long way in helping me. Hopefully in the relatively near future, I will be able to provide the same for others.
    4. Are there others on here with multiple chronic pain conditions? Are there any on here with concurrent autoimmune diseases? I feel like I keep getting diagnosis after diagnosis. It’s rough, but it also doesn’t seem to phase me quite so much as when I started getting chronic health problems.
    I look forward to meeting you all. I might be a bit needy as I learn the ropes, but once I get a handle on this, I hope to give back to the community.

  • #2
    Sometimes identifying problem foods and drinks can be challenging. One thing you could do is to keep a detailed diary, jotting down time of day, everything that goes in your mouth, urinary frequency, activities, along with pain levels, can help in developing a diet that's right for YOU.

    My IC was diagnosed in 1975 and I've had quite a few medical problems --- I won't mention them all --- I was diagnosed with non-hodgkins lymphoma nine years ago, several years later with colon cancer, which was successfully removed, type 2 diabetes, and a few allergies. At the time the lymphoma was diagnosed, I had back surgery to remove some of the cancer tissue, and there was some nerve damage, which resulted in pretty bad pain. I was referred to a pain specialist, who implanted a pain pump and prescribes pain medications for me. I suggest a pain specialist for anyone who experiences pain that can't legally be treated by primary care doctors or urologists.

    At the time I was diagnosed with IC, not much (if any) thought had been given to a food connection. I identified my food sensitivities by experience --- interestingly, my food problems are pretty much the same as those listed in the IC diet.

    I hope you feel better soon.

    Stay safe

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    I am not a medical authority nor do I offer medical advice. In all cases, 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.

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