Deeply confused..

[fonaki]

Hello..

This will be my first post on this forum... after many years of reading everyones' stories.. I guess it's my turn...

I have had recurrent UTI's for the past 15 years and even though I told them it was IC, no one really cared nor listened. I was finally diagnosed with IC Feburary this year after a painful cystocopy.

However, I am either extremely lucky or maybe misdiagnosed, as I can eat pretty much what I want (I did the IC diet for one month and re-introduced my beloved wine and coffee with no consequence). I am also extremely lucky on the sexual front, I have more than enough natural lubrication and although there might be a little discomfort upon entry with sexual intercourse, afterwards its fine.

I just get the constant burning, urgency and frequency, (some days are better than others). I have been on Elmiron for 4 months with not much success (but I am crossing my fingers, as I know it takes time). Is there anything else I can do, as my diet does NOTHING to my pain... hence my confusion..

I realise that I am extremely lucky, but I am confused... could I have something else? I am going to my gyno in August (welcome to the waiting time for doctors in Montreal, Quebec) and my uro again also in August...

Thanks Everyone... and I just want to say that the courage and strength that I read in these posts, gives me hope and personal strength.. especially 3am in the morning.. when it is -27 c outside...

[SharonA]

:welcome: to the IC Network...I am glad you came out of the shadow lands and decided to introduce yourself.

:):):)

[traceann]

I'm with Sharon and glad you joined in! We all know what a frustrating road the diagnosing, the treating and dealing with IC can be! ;)

And from my experience around here, there are as many similar symptoms for all of us as there are different ones, lol. But they all still added up to IC. If you're unsure or not comfortable with your diagnosis, by all means chat up your gyno about it, or even talk some more to the uro who scoped you or get another uro's opinion! You need to be confident with the diagnosis! :)

Yup, you got it - Elmiron can take a few months to get working, if I recall correctly it's like up to 12 months to get the full benefit. I think I started noticing things getting better in about 8-9. Actually just started to notice fewer and fewer "bad days". In the mean time, for me diet was huge, but sounds like you're not to affected by it. I've also used the home remedy things, like 1/4 tsp baking soda in a big glass of water (though if you have health issues that are salt sensitive, lol, not a good idea ;) ). I've also used Tums, and Prelief went everywhere with me. Sometimes even if I didn't eat something that bugged me, those things seemed to "soothe" my urethra and bladder, though I was affected first and foremost urethrally, ugh.

I wish I had more ideas for you, but all I can think of are the few coping strategies like those I mentioned. Sometimes when feasible, I'd use a cold pack on the perineal area, seemed to help my urethra sometimes! ;)

[Mrs. Peel]

Yes, welcome. This forum has been a sanity-saver for me, too.

As for symptoms, the only thing that I'm sure will flare me is a car ride longer than 1/2 hour. Between the jouncing and the seatbelt... gotta find a way to fix it so it won't tighten on my gut.

Are you wearing tight clothing? Washing your knickers in regular detergent?

[ICNDonna]

:welcome: The only thing I can think of is to ask if you are drinking enough water. It's important to get six to eight cups a day. And if your water supply is clorinated, you might want to try drinking bottled spring water to see if that helps.

Sending healing thoughts,
Donna