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IC smell?

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  • IC smell?

    I am really curious if any one else is/has experienced this... a few months after being diagnosed with IC, I've had a horrible smell. My uro said this is from the "infection" of IC. I have tried everything and finding it is putting a damper on my sex life with my boyfriend. Any feedback welcome eek

  • #2

    I am sorry, but I don't understand that part of "the infection of IC"...? I don't have an answer for you, but maybe someone will be along shortly. Just wondering what your doc meant.

    Good luck!
    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


    • #3
      All I can think of related to this - Are you getting DMSO treatments? They make you smell like garlic or cooked corn for a few hours to a couple of days after each treatment. Otherwise, as far as I know we do not smell due to IC, and I would get a 2nd opinion about what is causing your problem.


      • #4
        I never heard of an IC infection, but have you seen a gyno? Maybe you have a vaginal infection,could be bacterial, they ususally will give an oder. Especially if your boyfriend is noticing it, is it more predominant after sex? Sometimes it means infection. It is usually caused by the PH balance being thrown off in the vaginal area. I have had a few . They give you medicine to put in your vagina. Maybe you might want to see a gyno. Good Luck-JOJO


        • #5
          I also have never heard of an interstitial cystitis infection. And I've never experienced an odor from my IC. I agree that you need to be checked to be sure you don't have something else going on.

          Stay safe

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          • #6
            My urine sometimes has an odor, But I dont beleive that I do. And I have never had anyone tell me I had an IC "infection" (unles it was a regular old urinary tract infection..)

            I am with Karen, JoJo, and Donna. It could be a bacterial infection in the vagina, or even a yeast infection. I would get a second opinion asap, and I would probably go to a gyno rather than a uro. Im assuming your urologist has at least made sure you dont have a urinary tract infection?? I would go somewhere else if I could!!

            HOpe this helps a little,
            Let us know how you do!
            @[email protected]
            "Well the Secret O'Life is enjoying the passage of time." ~James Taylor


            • #7
              Count me in on this one I have never heard of an IC infection Please check with you gyn like JoJO suggested.. Here is something to dose your boyfriend drink alot or any.. I use to have a contius yeast infection with a smell when he drank, havent had one in the 19 months he's been sober. keep us posted and good luck
              'The will of God will never take you where the Grace of God will not protect you.'


              • #8
                Thank you all for your feedback. Actually it was a typo, I meant to say the inflammation of has caused a smell in my urine. I was on morphine for pain so I was a little loopy when I typed. I saw my uro again today and said this is a common side effect from IC. I was just curious if anyone else has it and if so what they do about it. Since my bladder leaks a little it accumulates in under garments and sprays and pads don't help. Kind of gross I know but welcome any feedback!!


                • #9
                  Are you drinking enough water?
                  My urine doesnt smell as much on days when I keep up with my water intake!!

                  It could also be medications...they are metabolized and usually excreted through the urinary system, so all the "garbadge" is in your urine, and that can cause an odor.....just like when you drink coffee, your pee smells like coffee.

                  Just a thought! Hope this helps,
                  @[email protected]
                  "Well the Secret O'Life is enjoying the passage of time." ~James Taylor


                  • #10
                    Jacqueline, I can always tell how badly I am flaring by the smell of my urine. I do not know how many times I have requested a urine culture because I was just sure I had an infection based on the smell...but nope it was just the IC being a bit worse than usual.

                    It's an awful, "sick" smell and like you there are traces of that smell that end up in my underwear, etc. (sorry to be so gross but it's true and I hate the smell.)

                    I do not have any vaginal infection at that time (no smell coming from my vagina at all) nor do I test positive for UTI. I DO test positive for nitrites or whatever they are, signalling extensive inflammation.

                    I think your doctor must be right, because I can tell you that even if I had no nerve endings and could not feel my bladder, I would still know what was going on with my IC, by the smell.

                    Love, ICY


                    • #11
                      P.S. And the smell is there no matter what I eat or drink, no matter what amount of water I drink. It is true that the smell is diluted somewhat by copious amounts of water, but only somewhat - it is still a very distinctive odor.

                      Love, Leora


                      • #12
                        Thanks Leora,
                        Glad to know I am not alone hi


                        • #13
                          Around the same time I got IC I also got bacterial vaginosis which can be the result of change in hormones and a change in the vaginal lining. I got a depository cream from the gyno that cleared it up. It has come back a few times. maybe this is it.


                          • #14
                            Hi, Mayray! I actually had BV once, and a yeast infection once in my life, so I know what each of them smell like....and the icky IC pee smell is something entirely different, at least for me, LOL!

                            It smells EXACTLY the same as if I had an active UTI - you know how your urine smells icky when you have a raging infection? That's exactly how my urine smells (and looks cloudy and dirty) when I am flaring but they say, no germs.

                            No germs in my vagina, either, besides normal flora.

                            So some of us...we just have IC pee smell...maybe it's rare, I dunno...

                            Love, ICY


                            • #15
                              I found this quote on some holistic health site doing a google search so at least some people are having this foul-smelling urine even with IC....because it says "both types of cystitis (UTI's and IC) can have all these symptoms..."

                              Both kinds hurt like hell. IC hurts like hell recurrently, and, sometimes hurts like hell without cessation.

                              Signs and symptoms of both types of cystitis can include:

                              burning pain on urination
                              lower abdominal pain
                              frequent need to urinate (up to 60 times a day!)
                              excessive urge to urinate at night
                              turbid, foul-smelling or dark urine
                              And my personal "favorite"

                              intense pain during intercourse