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Unusual Urine Smell Only During IC Flares..?

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  • Unusual Urine Smell Only During IC Flares..?

    Hey everyone. I've been diagnosed (officially) with IC since March 2009. Just recently though (in the last month or so) I've been noticing this horrible smell (sulfur is actually the best I can describe it) coming from my urine ONLY when I'm having IC symptoms. So I do not think it is a UTI because when I'm not experiencing symptoms, my urine does not have this smell.

    Has anyone experienced this and know what it is from?

  • #2
    The only time I have that sulfur smell to my urine is when I have a UTI. Sometimes, The only thing I have is the smell and sure enough when i go to the doctor, it is a uti. I have been using something called D-mannose that I got off of amazon. It has really helped prevent me from getting uti's and some people say it makes their IC feel better. You might want to make a dr. appt. I would hate for you to have a uti that gets worse.
    Kathy Strong

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    • #3
      Uti..?

      It is sooo weird though that the smell comes ONLY when I have IC symptoms. I will stop by Walgreens and maybe pick up a dip stick, but I don't see how the bacteria that causes a UTI and the symptoms that go along with it can "come and go" like my IC symptoms do.

      I'll let you know what the results are with the dip stick test..

      In the meantime, thank you for the D-Mannose suggestion. I am always willing to try NATURAL ways to help!

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      • #4
        I was dx'd in '03, & for a month or so before my symptoms actually started, I had this horrid smell to my urine, and I couldn't figure out what it was. At first, I though maybe I had an infection, but there were no other symptoms. I went to the doctor anyway, and my urine was negative for bacteria.

        I drank lots of water anyway (still do), so I knew that I was getting enough fluids. So yeah, I think the smell was a precursor to the actual IC, because I'd never, ever had my urine smell like that before.
        Like no one's watchin'!

        "Go confidently in the direction of your dreams. Live the life you have imagined" -Henry David Thoreau

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        • #5
          I thought I was the only one. the smell to my urine started when I was a teenager. I was embarassed cause my granny assumed that I wasnt taking care of my hygiene. Im Obsessive Compulsive about my hygiene so I knew that wasnt true. I never had a yeast infection, utis, or bv till I turned 20 years old. so there is no reason my urine should have been smelly. when that first uti hit. IC followed. Im embarrased to use public restrooms, because I dont want anyone to have to smell me. the smell in my urine is like 70% of the time. my sisters urine smells too but when she drinks a ton of water it goes away
          Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

          I have moderate-severe IC

          Currently stopped taking all medications due to pregnancy

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          • #6
            weird bacon smell

            Yep... I've had that if I've been in a flare-- I never could figure out if it was food related. Sometimes, I'd even have the bacon/urine smell for no reason. Not in awhile thank you very much. Ugh weird. J

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            • #7
              Bob also has what can only be described as "thicker" bubblier urine with an odor during flares. No infection. You surely know by know when you have an infection. Bob has never had one (TY) yet. When he is in a flare we are extra careful with diet and beverages. Lots of alkaline rich foods, marshmallow root tea and water. Clears up the urine within a day or two, and the end of the flare follows. Just what works for him, everyone is different. Good luck. Jill, wife of Bob

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              • #8
                My urine only smells real strong when I have a uti.
                TheresaMae

                Dx'd with IC May3,2010
                Dx'd with MS in 2002 and declared Disabled due to it in 2006.
                Severely Incontinent Due to MS and IC Flares make it even worse.

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                • #9
                  Asparagus can cause a strong and unpleasant odor in urine.

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                  • #10
                    Thank you everyone for responding!

                    I checked, no infection of any kind. My urine only gets the smell when I'm having an IC flare. I don't think it is from food because I've been eating the same type of foods all my life. So now I'm at the end of the line, so I'll look at the brighter side... I can use the smell as a signal letting me know I'll have a bad flare soon

                    If I find anything out new on this subject I will definitely post news

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                    • #11
                      Usually changes in urine odor are related to food or drink. I think when we have IC we tend to pay more attention to appearance, odor, etc., of our urine. It can be very difficult for an ICer to tell the difference between a flare and infection so I think the test strips are a good tool. If I get a "positive" for infection, I know I need to see my doctor.

                      Donna
                      Stay safe


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                      [3MG]

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                      • #12
                        Originally posted by kmstrong07 View Post
                        The only time I have that sulfur smell to my urine is when I have a UTI. Sometimes, The only thing I have is the smell and sure enough when i go to the doctor, it is a uti. I have been using something called D-mannose that I got off of amazon. It has really helped prevent me from getting uti's and some people say it makes their IC feel better. You might want to make a dr. appt. I would hate for you to have a uti that gets worse.
                        I hadn't heard of that one (D-mannose). I have been taking aloe vera and cystoprotek, what does d-mannose do for you exactly (and uti's)? Right now I take a macrobid after sex because the last couple years I keep getting UTI's no matter how careful I am. The macrobid has pretty much alleviated the problem but it would be nice if there was a natural alternative. Thanks
                        Cindi


                        Gelnique for frequency/urgency - works great
                        Macrobid after sex
                        Prilosec, continuous birth control pills
                        synthroid .088mg, mucinex-d, restasis

                        Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                        Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                        IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                        AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                        AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                        Great treatment flowchart on page 19 of the pdf

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                        • #13
                          to evemarie, i also have the same rpoblem with my urine smelling differently when i have ic symptoms. dont know why but it is definelty not an infection and only get it when my ic is bad

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                          • #14
                            I also have that problem. My urine began to smell "nasty" a day or two before my flare!

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                            • #15
                              Mine too smells funky when I'm having an IC flare. It NEVER used to and I'm 57.

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