constant sensation to go!!

[jamiet]

Hi,
I've recently been diagnosed with IC. After reading about other people's symptoms, I consider myself very lucky that I don't suffer the extreme pain that lots of you unfortunately do. However, my urgency and frequency are out of control and I have a constant sensation to go to the bathroom and even after i do go.
The sensation just doesn't go away. i'm sure I have retention and
i obviously have a small blatter but does anyone share this CONSTANT feeling of having to go? it is making me miserable and I have no life. I have found absolutely no relief. I eat a very bland diet and have been on elmiron for 4 months. Any suggestions would be greatly appreciated!
Thank you,
Jamie

[Kathi]

I'd give the Elmiron some more time. It takes 6 months or more to kick in. I know many of the ICer's suffer from urgency/frequency. If it gets very bad you might want to go into our Patient's Handbook & read about the interstim & discuss this with your doc. Hope you feel better soon, Kathi:hi:

[ICNDonna]

I'm very glad you found the IC Network. There's a lot of information and support here. I suggest you read the information in the Patient Handbook at http://www.ic-network.com/handbook/ You'll find date there about the various treatment options available.

Since Elmiron can take six months or more to be effective, you might want to talk to your doctor about something to help you in the meantime.

And that feeling of needing to urinate is one of the most common complaints with IC --- sometimes it can be so urgent that it becomes pain. When I flare, I feel like my bladder is trying to expel itself.

I have had diagnosed IC for 29 years now and I feel good the majority of the time. It may take a while for you to find exactly which treatments help you most, and which foods and drinks are a problem for you, but most of us do get there.

Remember --- for every individual posting here because they are in pain, there are hundreds out there with IC who are not posting because they feel good and do not need the support of the boards.

Sending a welcoming hug,
Donna

[Dixiefireball]

Welcome to the ICN family sorry you have IC but never give up there is always hope there is many new and old treatments out there that could help you the sad part is we are all diff and we have to try many things to find out what is best for us.
even the diet is diff. i had to make my own diet list i find i can eat alot of things that are on the no no list but some thing i can't fish kills my bladder i can't stand no type of tea (many can drink herb tea's) no tomatos unless there home grown and boy i can't wait until my tomato plants are big enough to start bearing LOL:dance: i find that my klonpins 1 mg three times a day helps my bladder alot plus i take my own dmso treatments heparin and marcaine one to three times a day as needed the cath i feel helps get alot of the urine out that i'm retaining. we are all diff., but we are here for you and we will do anything we can to help you.
just remember we are here for you and we DO CARE.:kissing: if you need anything please feel free to post or even pm me if you would like i would be happy to talk to you even ifs its to vent its okay. Remember your life don't stop because we have IC we just have to find the the a diff road sometimes to make our dreams come true. But we can do it.
sending you tons of hugs and prayers
Rhonda

[kadi]

Hi Rhonda,
What's klonpins?
Thanks for your helpful answer to my DMSO questions, by the way:)

[Katrina]

Hi! and Welcome to the ICN family. That is one symptom I am struggling to find relief from. It did improve some from elmiron though....so just because I can't get rid of it yet doesn't mean you won't have relief from it soon.

Healing thoughts,

[ICchell]

Jamiet,
I know how you feel,it stinks!!!!
I had alot of retention/urgency/frequency.Recently I started a new medicine called Flomax.It has been such a blessing!!!
It helps soo much!
It usually is given to men for prostate problems and now it is given to women also.
Before the flowmax,I was retaining a half Liter.I went to my Uro just the other day and told him "I know that I am retaining,I can feel it,my stomach is killing me".So he catheterized me.I went home and started the Flowmax that night.I've been taking it now for the past 3 nights ,it helps all during the day too!!
I am presently keeping a voiding log and I can see the difference.Before the flomax i would pee 16 -17 times a day!!!!!
Since Flomax, now it is 8-10 times,big difference.
Michelle

[jamiet]

I really appreciate everyone's feedback and suport!
Michelle, thanks for the flowmax suggestion - I'll definately mention it to my doctor... However, the stange thing is though, that the few times my doctor used a cath to empty my bladder I had to go immediately after that. The doctor seemed perplexed because he said that he completely emptied my bladder. Even when they performed a sonogram afterwords and it showed that it was empty, I still had to go! My doctors thought that it was impossible but I did end up going (even though it was only a tiny bit). Is this the same thing as retention or is it just sensation? I find it alarming that my doctors weren't convinced that I had to go.
Thanks for any advice!
Jamie

[ICchell]

Jamie
Yes that did happen to me to.my uro seem a little confused:confused:
After he cathe'd me I immediately got off the table and ran to the bathroom and went the normal amount.Then I walked outta the bathroom then boom right back again...had to pee more,this time it just dribbled out.Itold him I still felt full and he said" But I just emtied you, it is because of the position when i cathe'd you,you were laying back" Then he said sometimes the Bladder scan machine will show up that you are retaining urine if you have an ovarian cyst....????!! This is all so frustating!!!!


:headbang: :headbang:
Michelle

[ljl765]

Speaking only for myself, when I used Elmiron years ago, it caused severe urinary retension in me. My Urologist told me the retension aggrevated the bladder and made me feel like I had to go..a lot!! I use Xanax to relax or sleep..but the patches I use now take care of that problem. Only when in a flare is it like you described.

I once went 50-60 times a day and never slept!!
I remember how that felt..and I'm so sorry that this is happening to you.

Poor thing, I hope you're feeling better very soon. As you learn more about your own body and IC, perhaps you can find more ways to help yourself, like by looking for the drugs ingredients that might cause this to happen more often, and avoid them. Take care of you