Noob here too...

[Margerle]

Hi all -

Was diagnosed with IC about a month ago through hydro/cyto. It seems that the further I get on this journey the more aware of the problem I am, and the more pain I tend to feel.

:: blergh ::

:headbang:

I was pregnant and had my baby a year ago. Of course during pregnancy, one experiences those weird twinges and dull aches on the bladder, so when the didn't really go away after having the baby, I chalked it up to being older (I'm nearly 35.)

I attempted to renew my term life insurance policy after the baby was born and the insurance company reviewed my physical data and urine specimen and flagged it for abnormal. I attempted the tests 2 other times with the same result. So I head in to see my GP.

He determines that I have an abnormal amount of protien in my urine, so after 24 hour culture and some routine tests, he forwards me to a nice nephrologist.

The kidney doc looks at me and says she thinks I have IC but I need to see a urologist for confirmation. She wanted to start her treatment with getting this part diagnosed and get on a treatment schedule for that.

The urologist took one look at me and said IC is what I had, but since there is cancer history in my family, they wanted to do the hydro/cyto to rule out anything like that - which would also diagnose IC... which it did- and it did not find anything unusual other than that. (They also checked for reflux to the kidney's which was also negative - thank goodness).

So I'm on Elmiron - I have a background in healthcare, and don't mind doing instills - so that's the route I've taken. I take prosed prn, which is 1 or 2 a day.

I'm just so tired of being so AWARE of my bladder all the time. I'm grouchy, irritable, I gotta pee, but when I pee I just get that "pinch - you don't get to go now!" My eyes water when I finally do get everything relaxed enough to go, and thank god I don't have burning, or vulvar issues along with this.

I do have bloating, and tenderness and pretty decent back pain- though I'm still carrying my pregnancy weight a year later... which is depressing.

I guess, I just am looking for people to chat with because no one close to me really understands... I'm the caretaker in my family, I make sure all the kids are where they need to be, the dogs are fed and pottied, the clothes are washed, dinner is on the table, the baby is fed etc....

When do I get to get taken care of?

[vm]

:welcome: So glad you found us, but sorry you needed to find us.

The part where you talked about always being AWARE of your bladder? OMGosh, do I remember that and remember using those exact words. Ugh. I've been fortunate to be unaware of my bladder for several years now, so you may get there one day, too. I never thought I would in the beginning, but it happened!

[Mrs. Peel]

Welcome, IC Sister.

I'm pretty new, too. This is an excellent place to learn and to vent. I'm glad your kidneys are OK.

Moms don't have to have IC to want a break!

[c2miracle]

:smile tee Hello Margerle, and welcome. Having friends and family not "get it" is hard on your emotions and flaring. I found giving my family members pamphlets and info off the internet about IC helped. Of course they still have questions and may not understand why I can't show up at a function or be active in a certain activity when I'm flaring. It's something we need to accept, the fact that we will not be able to please everyone everytime and there will be disappointments. We are always here for you, hang in there and Think Positive! :smile tee

[Margerle]

Thank you everyone :)

I'm in a particularly hard flare. I was doing very well after my last instill a week ago, and as I started to flare the last couple of days, I was looking forward to another one... which I took yesterday...

WHoooo oeeee... Do I hurt today.

My husband has been trying so hard to remember to avoid little potholes and hard dips when we commute to work, but today I felt myself bracing for EVERY little thing... I know it was getting annoying for him. I don't know how to explain what I have to someone else?

I've given him pamphlets etc. and he reads them with great interest. But I think there's something missing from the 'intellectual' aspect of this as portrayed by the handouts and pamphlets to the actual APPLICATION TO LIFE. I know my family reads "painful bladder", and thinks of times when they've had stones or infections or whatever - and they can relate a bit, but for me, at least half of my frustration and pain and debilitation comes from the CHRONIC nature of this. The fact that it never goes away... the fact that "it" will always "be".

I am strengthened by the fact that so many here have been able to find relief. I have hope that the instills will offer an efficient treatment and I'll be able to see a light at the end of the tunnel in a few months. I've had 2 instills so far (not counting the one I may have gotten at the hydro/cysto). I'm hoping that the relief will allow me to get active again and get back to being the mommy and wife I want to be. :)

Thanks again for all your support everyone!

:: hugs ::

[SharonA]

You have probably already thought of this, but since you have been having problems since your instill, I am wondering if you have been checked to see if you have a bladder infection. It is always a possibility after being cathed.