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blondee
12-01-2003, 01:03 PM
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

ICNJess
12-01-2003, 01:56 PM
Jacqueline--

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. :confused:

Good luck!
Jess

KarenNielsen
12-01-2003, 05:36 PM
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.

JOJO
12-01-2003, 09:17 PM
Hi
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

ICNDonna
12-01-2003, 11:55 PM
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.

Donna

rnewman
12-02-2003, 01:50 AM
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!
Rachel

tigger_gal
12-02-2003, 01:54 AM
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
Brat

blondee
12-03-2003, 09:45 AM
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!!

rnewman
12-03-2003, 10:04 AM
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,
Rachel

ICyuck
12-03-2003, 11:05 AM
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

ICyuck
12-03-2003, 11:06 AM
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

blondee
12-09-2003, 03:33 AM
Thanks Leora,
Glad to know I am not alone hi

mayray518
12-11-2003, 08:35 AM
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.

ICyuck
12-11-2003, 11:46 PM
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

ICyuck
12-11-2003, 11:58 PM
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..."

XXXXXXXXXxx
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

erinaj1997
12-12-2003, 12:35 AM
Jacqueline,
Definitely ck with your gyn about the BV. I had that also and it does smell. You would also have a discharge that is almost like a grayish color.

The only time I notice that my urine smells is when I'm taking OTC Pyridium. I don't know if it's the dye in it or what. BUT eek YUCK

Erin

ICNDonna
12-12-2003, 12:38 AM
Some foods and medications can cause foul smelling urine. Insufficient fluid intake can also be a factor, especially if the urine looks fairly dark colored and murky.

Donna

blondee
12-19-2003, 12:55 PM
Thanks for all of your input...it really helps!! I went to both then gyn and uro and it is my urine that smells constantly (they said from IC, maybe from meds too??) and my bladder leaking a little on panties makes the smell more apparent. Guess I have to deal with it frown

Laurelmarie2
12-22-2003, 01:17 PM
I know exactly what your talking about. Its disgusting. Lots of water will take the acidity of it down. I shower alll the time lol.

YankeeCandle224
01-09-2004, 10:10 AM
Not to be nosy, but is it a fishy type odor? If so that is a sign of a possible STD or bacterial vaginosis. Especially AFTER sex and he has ejaculated inside you, if you smell that fishy smell I'd be checking it out fast. Any type of vaginal infection can lead to pelvic inflammatory disease and MUST be treated or it can lead to infertility.

Good luck.....Sandy

radstudent
01-09-2004, 01:30 PM
I notice that sometimes I too have a smell coming from "down there". I do not know what causes it. I do not have any type of infections.

ic-debra
01-16-2004, 04:21 AM
It sounds to me like you should consider changing urologists. This one seems uninformed. The definition of IC is that there is NO infection.

Laura E
01-22-2004, 11:16 AM
HI..i was told i have odor because of how often i urinate...that was the reason i got. I do have that smell and i jsut hate it. I dont understand the infection part the doctor told you. I get embarrassed of it. I have to wear a pad everyday and change it alot ..i seem to have a leakage problem!! that is another thing that gets sickening..going broke buying pads!!! lol I gotta laugh or im gonna cry about it all, ya know??? lol

Laura E
01-22-2004, 11:21 AM
HI..i was told i have odor because of how often i urinate...that was the reason i got. I do have that smell and i jsut hate it. I dont understand the infection part the doctor told you. I get embarrassed of it. I have to wear a pad everyday and change it alot ..i seem to have a leakage problem!! that is another thing that gets sickening..going broke buying pads!!! lol I gotta laugh or im gonna cry about it all, ya know??? lol

SueP1
01-31-2004, 12:02 AM
I have noticed urine smells really bad after eating asparagus, so I wouldn't be surprised if more foods cause this! :o

DeeOwlgrl
02-07-2004, 09:09 AM
Hi all!
When my IC first kicked in, my urine also gave off a terribly foul odor. I, too, was at a loss as to what was causing it, because I wasn't eating anything different, and I had been checked repeatedly for infections with negative results. No matter how much water I drank, the smell was always the same, and I just knew something had to be horribly wrong, because it had NEVER smelled that way before. Anyway, as I got the IC under control and my symptoms eased up, the odor gradually disappeared, and I haven't had it anymore.

hugs to all,
Dee

ICchell
02-08-2004, 11:29 PM
SueP1 ROFLMBO!!!!!!
That is too funny about the asparagus!!!

I haved asked people about the weird smell after eating asparagus,they're like "What are you talking about!".
Then they came back and said "Now I know what you mean about the smell".
Wonder what causes this??
Chell

ic-debra
03-01-2004, 08:37 AM
About that asparagus smell...

http://my.webmd.com/content/article/43/1671_51089