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Newbie here, Bad flare up, any advice?

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  • Newbie here, Bad flare up, any advice?

    Hi everyone. I was diagnosed with a "sensitive bladder" about 2 years ago. This was after about 6 years of supposed UTIs (tests always came back negative) and frequent bladder and urethral pain. I was prescribed potassium citrate and advised to use OTC Avo or Cystex for the urgency and burning. I have flare ups every few months, and most times the potassium and the OTC stuff helps. But the last few flares have been nearly unbearable. I get pressure in the bladder itself and incredible stinging/burning pain in my urethra. I began researching online and found this site, which has been a huge help and source of support for me- even though this is my first post. Just knowing that I am not alone and crazy makes me feel so much better.

    I finally made an appointment with a new urologist and saw him today for a consultation. I am scheduled for some tests next week. I won't actually see him for the bladder exam until next Friday. In the meantime, I've been taking vicodin for the pain as well as some herbal supplements I read about on this forum, like marshmallow root. I've been drinking almond milk and aloe vera. So far, the only thing helping ease the pain is the vicodin, which I know is not good and just masking the problem. I have been using a heating pad between my legs at night, and that definitely helps me fall asleep.

    But here's the trouble- I work in a public library (I'm a children's librarian) and unfortunately, since my job is so public-facing, there is no way I can take painkillers during the day. I have already missed a lot of work and can't afford to keep using my sick days. Does anyone have any advice to help me get through the next few days until my appointment? At night I can come home and take a painkiller, but how do I get up, commute, and work all day long with this kind of pain? I am so grateful to have found this online community and the wealth of resources!

  • #2
    Hi Grace,
    Welcome to the ICN!
    A few thoughts...
    If you've not tried the IC diet yet, that's a great place to start. And it's something you can do for yourself that doesn't cost money, no side effects, and no insurance hassles
    Here's a link to a diet "cheat sheet" - I found it helpful to print it out & use it to plan meals from the left hand column. It takes a few weeks on the diet to reach full effectiveness, but you may find relief faster than that by eliminating trigger foods.

    Stick-on heating pads help a lot also for managing flares at work. Bodiheat is one brand, Thermacare is another. They can be used for menstrual cramps or IC flares, just stick them onto the inside of your underwear & they work like a heating pad without a cord!

    Have you tried generic acetaminophen which is what is in Vicodin, without the sedating narcotic ingredient? This might be an option. If you decide to try this, you might try it on a weekend. Many IC patients are ok with acetaminophen. For some weird reason, I'm not & usually flare, which is why I'm mentioning a weekend trial.

    The aloe vera you're taking, is it Desert Harvest Aloe Vera? Desert Harvest is the most well researched aloe vera for IC patients. The reason I'm asking is that some other brands of aloe vera available at health food stores can trigger IC flares. One brand I saw also contained citric acid! (very bad)

    Has your recent flare occurred at the same time as any changes in diet, activity, supplements, exercise? Just asking because some flares can sneak up on you over time. I didn't realize the avocado I was eating in my sandwiches was a problem until I'd been in a flare for several weeks, remembered I'd just started eating it, took it out & then the flare ended....

    I hope your appointment with your doctor gives you some answers, things to try and relief soon!

    Wishing you better days in 2011!

    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.

    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest

    Current treatments:
    -IC diet
    -Elavil 50mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic when doing an instillation to prevent UTI
    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!


    • #3
      Thank you!

      Thank, kadi. I am definitely taking the IC diet very seriously. In the past, I have cut out bad foods and drinks (coffee, wine, spicy foods) during and right after a flare up. But then, once I start feeling better, I lose my self control and go right back to the bad stuff. This flare has been so intense and after reading your advice and other threads on this forum, I can determined to stick to the IC diet. I'm going to give the stick on heating pads and the acetaminophen a try at work this week. And thank you for the info about the Aloe Vera- turns out I was using the wrong kind! That could explain why it seemed to be making it worse! Thanks for the warm welcome.