anyone have urgency / frequency only?

[gloriabono68]

I read all the time on here and i haven't been able to find anyone with problems/symptoms similar to mine and was just wondering if anyone had my end of the IC scale......
I pee all the freakin time....like every 10 to 30 minutes.....i do not have alot of pain with my IC , just occassionally. I literally cannot leave my house most days because of the constant going, nor do i sleep much at night. I feel like i have to pee constantly , that feeling never ever leaves. and yes i still pee everytime i go.......I am taking large amounts of ditrapan and urelle and now elmiron three times a day, i have been having bladder cocktails twice aweek until this week...just once a week. Nothing seems to be working or slowing it down any. I have had a billion tests it seems like and THey defintely say its IC. I have had three different opinons.....currently on my third.......all tell me the same thing. But then i see all these different medications and things people are doing that i havent done. SHe keeps thinking i am going to have to have the interstim done next.........if it would even help me that is must have more tests too find out........then i hear bad things and good things about that.........so i dont know what to do.......but i am miserable.....i never knew just having to pee would be life altering to the point of not being able to leave my house most days.......and i swear i am losing my mind its starting to "get" to me.......does anyone else take what i take or feel similar to what i am feeling and going thru?? email me please or respond on here.........gloriabono@yahoo.com
i need help and prayer and i don't know some relief........i cannot take this much longer........
gloriabono:( :(

[ICNDonna]

Were you diagnosed by hydrodistention? Did it help your symptoms?

There are many treatments available --- if those you mention are the only ones you have tried, there are a lot still left to try. The Patient Handbook at http://www.ic-network.com/handbook gives information on those.

If you're not having pain, you might discuss the possibility of pelvic floor dysfunction with your doctor --- some are really helped by physical therapy. Or, again when not in pain, another possibility is to work with your doctor on a bladder retraining program, where you delay a few minutes before urinating when you feel the urge --- and gradually increase the time between. It does work for some, but should not usually be tried if in pain.

Sending warm healing thoughts,
Donna

[vm]

Gloria - Please read my story. It is the link below my name. It sounds like your IC is similar to mine. I feel much better now thanks to treatment, but it sure sounds like the way I felt in the beginning. Please e-mail or PM anytime. :kissing:

[IWin]

Hi Gloria,

I, too, have primarily frequency and urgency. I've had problems since I was a kid and tried to get answers, but as most of us know, answers are not always easy to come by.

A few years ago the frequency and urgency got real bad, at least for me. I think I was going about 15 -20 times a day (which is far less than some) but made going out to do errands or going to work difficult. I can really relate to a lot of what you are feeling. I really let this take over my life.

The IC diet helped me tremendously. I always knew some foods made me pee more often, but it wasn't until I really started eliminating offenders that I saw how much they did affect me. I still had to pee pretty often, but the sense of urgency (that feeling that I've got to drop what I am doing and RUN to the bathroom) was less.

I am now on Elmiron, and it does help me a lot. It took a long time to work (9 months), and then several months later I stopped taking it because of side effects. I am back on it now and beginning to see results again.

I am now seeing a new doctor, who thinks I also have PFD.

I'm not a very patient person, but I am learning that I must be with IC. Answers are hard to get and treatments work slowly.

Please don't let this take over your life.....go out and live it. You may not have control over what IC does to you, but you do have control over how you deal with it.

[Ruby Mercer]

TO: Gloriabono68. I am new to this board and very, very new to chatrooms, as well as being old enough and non-technical enough to maybe be doing this all wrong, but I'm trying.
I was particularly interested in your story because it is somewhat like mine. I've never, every (thank God) had pain with my IC. It was diagnosed only about six or seven years ago, although I had it since I was fourteen years old. I can remember going to the little girls room between every class in high school. The condition has, of course, gotten worse with age. Now I've reached the place of going as much as forty times in twenty-four hours and as for a complete nightss sleep? Forget it unless I'm in the hospital with a catherter so I don't have to wake up every twenty minutes or so; I cope with sleep deprivation all the time.
And I have no medical help. I had some meds at the time of the diagnosis, but then my company changed insurance companies and the cost of the meds became prohibitive. And don't ever believe that Medicare will assume more than minimal responsiblity for your medical costs. It doesn't. I can't even afford the co-pays.
So you have at least one empathizer, for whatever it's worth. And yes, I do pray and I will pray for you as I pray for myself. I'm hoping that someone will have some encourageing words for me, too. Watching a TV show and heading for the bathroom every time a commercial comes on gets old really fast.
I do hope to hear from you again and that you've received some helpful information. Ruby Mercer

[gloriabono68]

Iwin...........what is PFD?? or something to that effect..........thanks for sharing your story.......sounds similar ..........i was starting to think i was the only one.........

RUBY.......bless your heart honey........:kiss: This message board is a life saver i cannot tell you how many times i have turned here for help and comfort.........I don't know how you do it with no medication.......have you tried to apply for medicaid or disability......
feel free to email me.......gloriabono@yahoo.com and please come back here often and tell us how you are doing and feeling......it reallyhelps......to talk to everyone in here.......

I try and be careful about what i eat and drink but this IC diet is very confusing to me ........i need major help with that as well......so any suggestions on that would be great too..........

I am so glad to know that other people have similar symptoms i was starting to think i was seriously the only one ..........i am just literally starting to go off the deep end.........

I hope we all can get some help and soon...........permanant help......

I will pray for all of you as well.................
gloriabono

[sparklebabyprincess]

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I pee all the freaking time....like every 10 to 30 minutes.....i do not have alot of pain with my IC , just occassionally. I literally cannot leave my house most days because of the constant going, nor do i sleep much at night. I feel like i have to pee constantly , that feeling never ever leaves. and yes i still pee everytime i go....

so i dont know what to do.......but i am miserable.....i never knew just having to pee would be life altering to the point of not being able to leave my house most days.......and i swear i am losing my mind its starting to "get" to me..
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I could not have typed the above better then you, only I pee from a matter of seconds to every 30 minutes I have found foods that will make it worse and bring on the pain like tomatoes that are to soft, lemonade, anything with to much lemon in it, some times tomato sauce, soda I have noticed that fountain drink's are the worst for me but I can get away with drinking a can, wine or anything alcoholic most things that are spicy.

I'm on elmiron three times a day also
My peeing also gets worse the more mad or nervous I get, and car rides are awful for some reason I do better in the truck then I do in the car, the car just seems to have more vibrations then the truck but you would think it is the other way around.

I get out of this house if I'm lucky five times a month, and I know I'm loosing my mind. I know its bad when getting the mail is the thing I live for and if something comes for me it makes my day every day at 2:00 PM I walk out and get it. To be honest it's the main reason I get out of bed. <--- see told you I'm loosing my mind. I do all my living through the Internet also and I collect my little ponies. I like getting them from thrift stores (only after moving there are no thrift stores) so I can fix them up it means so much just to be able to do something I enjoy that help get my mind off of my stupid bladder.
yes my friends make fun of me I'm a 23 years old that collects my little ponies I really don't care though they make me happy and I need that. now we have moved away from all my family and the thrift stores. so the only thing to do is get the mail and get on the Internet. wow my life is exciting. well I do exercise every day when I can, I look forward to doing that also. I'll stop before i make myself look really weird

you are in my prayers and I hope you can find something that works for you :) please feel free to email me at travkru1859@aol.com

[sleepyangel30]

sparklebabyprincess. I'm so sorry that you don't get very much sleep. peeing all the time will drive you crazy gggggrrrrrrr. I remember I use to go every few mins myself now I go every 2 or 3 hours. Some how it stopped. I guess because I stop eatting certain things that I used to. I have not any flares in a long time. If I eat something bad I will start peeing alot. I told my husband my name might as well be pee girl and he goes no your name should not a pee girl lol. Well if you needing someone to talk to feel free to email me at sleepyangel30@hotmail.com Take care god bless!

[IWin]

Gloria,

PFD is Pelvic Floor Dysfunction. Let me see if I can explain it as my doctor did...... Because I feel like I have to pee so often from the IC, I have become used to tightening my pelvic floor muscles (a natural response to trying to "hold it"). I don't realize I am doing anything or feel like I am. When you urinate the bladder has to contract and at the same time the pelvic floor muscles have to relax. My muscles don't, so my bladder doesn't always empty...... thus part of the reason my bladder feels full, is it may be partially full. And an IC bladder doesn't like much urine at any time.

A natural response to trying to empty the bladder, especially if we know we are going to have to go again in a few minutes, is to try and push and strain. This only makes the problem worse. Thus a big viscious cycle is set up.

I had a uroflow done which showed my urine stream stopped then started again. He did an ultra sound that showed I still had urine in my bladder. Then he poked around internally and said most to the places he touched were tight and I was uncomfortable with his poking. Since he told me all of this I have paid more attention to how I pee (do normal people even think about these things???!!!). I do have a lot of hesitancy. But stangely, it is mostly during the night and in the morning.

It's very interesting. I think there is info on it in the Patient Handbook. Dr. Moldwin's book has a lot about PFD in it.

I really think the Elmiron is helping with the IC and we have to work on the PFD.

Hope this helps.

[gloriabono68]

Thanks.........apparently i do not have that yet , praise the lord, I couldnt handle anything else right now. I have had so many tests done its unreal. I have had that ultrasound thing done several times but they my bladder empty's pretty well. So they don't think that is contributing to the problem., as of yet. I do however , they have found have a very small bladder. ITs half the size of a normal bladder. which believe me works against me too............
some days i literally feel i cannot win for losing..........but still life goes on and i must find a way to shuffle through and count the many blessings that i do still have.........
take care
gloriabno

[IWin]

I, too, had two ultra sounds done showing my bladder empty, but the third one showed otherwise. Also, this is the second uroflow test I had done. On looking back at the first one, I can see where my stream slowed then got stronger again...but that doctor never said anything about it. My problems with the PFD seem to be mostly at night and in the am. Maybe because it's not all the time it wasn't picked up sooner???

I am now on my third urologist, and he IS one of the best. And he's the first to mention PFD....it really makes sense. My second doctor was baffled by the morning thing so suggested I see the third.

You might want to ask about it, especially, since you say you pee every time you go.

[gloriabono68]

Thanks..........i will certainly check into that...........I don't know whether to switch doctors or not..........i am just so confused and overwhelmed but all the complexities of this illness..........its gonna drive me crazy i think.........
thanks again
kristi

[blue]

I started out with just frequency and urgency. Then, the pain came! I just thought it was normal! Right now, I'm going 3 times an hour!