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Tested negative for UTI - is it an IC flare after all?

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  • Tested negative for UTI - is it an IC flare after all?

    Hey there,

    I've had ongoing bladder problems for a long time, am like 90% sure it's IC, but haven't been fully diagnosed with cystoscopy yet as when I got to that point I was moving so couldn't make an appointment. However, I've had symptoms for 15+ years, which have worsened over time.

    Anyway, the last week or so I've had worsening urinary symptoms and bladder pain, along with some quite severe urethral pain that refuses to shift. I took a sample in and went to the doctor yesterday, which tested negative for UTI. She's sent it off for a culture but I have my suspicion it likely will come back negative. The problem is, I'm still not 100% convinced I don't have a UTI. I don't normally get symptoms this severe, and it's unusual for me to feel this much discomfort around my urethra. (I get some, but this is another level lol). I'm also waking up every hour to go to the toilet, which isn't like my usual flare, where I will only wake up a couple times. (I also have to urinate often before I sleep and throughout the day as I'm never comfortable).

    Is this likely to be just a rotten IC flare up, or is it still possible it's a UTI? Could it instead be something like bladder stones or am I just being paranoid? (I don't have any blood in the urine, and apparently my urine is more on the alkaline side so I'm doubtful of this but figured it can't hurt to ask)

    I'm going on holiday in 2 weeks so I don't want to have any problems while in a foreign country. Just figured I'd get an idea of whether it's 'normal' for flare ups or IC to just worsen sometimes, and I just have to see this through.

    I don't know if it's relevant but I'm a 32 yo female.

  • #2
    Re: Tested negative for UTI - is it an IC flare after all?

    Unfortunately, we all are different with out IC symptoms. It does sound like you could just be in a nasty flare. On the other hand, maybe your culture will come back saying you do have an infection.

    You say you've never been officially diagnosed via cysto, but you're pretty sure it's IC. If you've had it for 15 years, it's likely you know what you're talking about.

    Do you have any types of meds to take? Have you ever seen a uro or got a prescription for your pain?

    It would be great if you could squeeze in a visit to a dr before your vacation, but I realize 2 weeks is pretty close. I will tell you one thing... I ALWAYS feel better when I'm on vacation. I think it's because I am so distracted from the every day routine. I have went on several vacations while in a flare. One was a two week European cruise. I did have a few days where it felt a little worse, but for the most part, my bladder felt better. I've heard a lot of people say that here.

    If you could just get a script for something to take with you...like uribel, or can you get AZO over the counter (I don't know what country you live in). Also, eat sensibly while on your trip - follow the IC diet.

    Either way, I do hope you have a nice vacation and your bladder/urethra behaves!
    Jane
    Diagnosed 1/7/14 via cysto/hydro

    Current Treatment:
    10 mg amitriptyline, DH Aloe Vera

    Used During Flares:
    Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

    Practicing bladder training and stress control (hot baths, pelvic stretching)
    Recently tried PT, do not appear to have PFD

    Things that have not helped in the past:
    Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

    Also have migraines and IBS

    Comment


    • #3
      Re: Tested negative for UTI - is it an IC flare after all?

      I'm glad they are doing a culture --- that should be a relief for you --- just knowing what's going on can help to relax. Whether it's a flare or infection, hopefully it will ease before your trip. If you can't get in to see your urologist before then, your primary care doctor will probably help you with some emergency medications; I always like to have something on hand even if it's only a few days on the coast 75 miles away!

      I hope it's a fun trip you have planned.

      Warm hugs,
      Donna
      Stay safe


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      Comment


      • #4
        Re: Tested negative for UTI - is it an IC flare after all?

        Originally posted by my2boys99 View Post
        Unfortunately, we all are different with out IC symptoms. It does sound like you could just be in a nasty flare. On the other hand, maybe your culture will come back saying you do have an infection.

        You say you've never been officially diagnosed via cysto, but you're pretty sure it's IC. If you've had it for 15 years, it's likely you know what you're talking about.

        Do you have any types of meds to take? Have you ever seen a uro or got a prescription for your pain?

        It would be great if you could squeeze in a visit to a dr before your vacation, but I realize 2 weeks is pretty close. I will tell you one thing... I ALWAYS feel better when I'm on vacation. I think it's because I am so distracted from the every day routine. I have went on several vacations while in a flare. One was a two week European cruise. I did have a few days where it felt a little worse, but for the most part, my bladder felt better. I've heard a lot of people say that here.

        If you could just get a script for something to take with you...like uribel, or can you get AZO over the counter (I don't know what country you live in). Also, eat sensibly while on your trip - follow the IC diet.

        Either way, I do hope you have a nice vacation and your bladder/urethra behaves!
        Thank you for the reply! I'm pretty sure it's IC, and the uro I saw before said that IC and PBS were pretty much the same condition.. I've had bladder symptoms since I was fifteen or so which just worsened over the years.

        I used to be on mirabegron but it stopped working so I haven't taken it now for a couple years. I'm not on anything else right now, and was told I couldn't get pain meds or any kind of meds to help until I'd been referred to a pain clinic (which would require me to have a cystoscopy/hydro first).

        Unfortunately my doctor is just a temporary doc as I'm still waiting to move into my new apartment so I'm currently having to stay with my mother. Which means I can't really ask for anything specific as they don't know me well enough. They don't sell anything like AZO here (I live in the UK, where bladder meds are pretty scarce) and I've heard of uribel but I don't think I'd be allowed to be prescribed it. In any case, I'm seeing a doctor on the 16th, so maybe I'll be able to bring it up. Thank you for your support!!

        Originally posted by ICNDonna View Post
        I'm glad they are doing a culture --- that should be a relief for you --- just knowing what's going on can help to relax. Whether it's a flare or infection, hopefully it will ease before your trip. If you can't get in to see your urologist before then, your primary care doctor will probably help you with some emergency medications; I always like to have something on hand even if it's only a few days on the coast 75 miles away!

        I hope it's a fun trip you have planned.

        Warm hugs,
        Donna
        Thank you, I'm going to South Korea and Japan haha, which is very far from home, so it'll be different. Do you know of any kind of meds I can ask for that may help? I'm from the UK and I don't know what is really available for me... Unfortunately I can't take meds like tramadol due to being on Zoloft as there's interaction between the two.

        It really doesn't help being constantly in pain, but like everyone says, all flares are different. I just wasn't sure whether IC suddenly worsening is something that can be normal in some cases.

        Thank you for your advice, here's hoping I get to the bottom of it or at least get some relief before I go away at the end of the month!

        Comment


        • #5
          Re: Tested negative for UTI - is it an IC flare after all?

          Can it be pre-menopause? This can worsen the symptoms. Make test to find out, maybe you need estrogen cream? Use also coconut oil in vagina and around urethra, maybe gives some relief.

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