IC and "Shy Bladder Syndrom"

[Mikki H]

Has anyone else struggled with these two problems simultaneously? I am right now. I feel I gotta go all the time, when I get there........ it takes LOTS of breathing, relaxing, rubbing fingers together (weird, I know) and then finally after visually picturing it getting closer and closer then I dribble out and only with proper breathing can I get a good void going - talk about frustrating!!!!!!!!

And what about holding it or not going when you should, that's gotta be bad for symptoms of IC......

[kelly McC]

I have had trouble having to go and sometimes I turn the water on and it helps other times I just relax and breath . It's definately not good to hold it in if you have to go. Best of wishes,
Kelly:grouphug:

[Mikki H]

thanks Kelly for both of your replies! Sometimes you know, I think I'm crazy and must be the only one with this ridiculous symptoms! I don't hold it, but sometimes I just can't get it going! I just get up and go back a few min. later and it works....

[gypsyjoy]

My Daughter in law and I both have IC. When she has a flare, she has a terrible time going, she can sit there for 15-20 minutes in some serious pain trying to relax enough to go. Now for myself I am in there 40 plus time a day and that is a good day if I am in flare which is on going lately 50-60 times. And all I have to do is sit.
JOY:kiss:

[Mikki H]

Joy, so are you saying when you're in a flare it comes easier? I go back and forth with this shy bladder thing, but I haven't figured out when/why. What a cruel addition to IC, isn't it? Thanks for sharing.

[janelle77362]

Mikki,
I have the same symptoms and what my uro suggested for me was to try "double-voiding" especially if you always feel like you have to go right after you have used the bathroom. Try going to the bathroom using basic breathing techniques. Then when you feel like you have gotten as much out as you can get up but don't leave the bathroom. Take about 5 minutes and brush your teeth, comb your hair, whatever. Turn the water on and go again as much as you can. This has helped me tremendously with both bladder pain and retention. I have had nearly no retention since double-voiding at least twice a day.
Janelle

[Audrey Rose]

When I flare, I also have a hard time going. I have to sit there and do deep breathing exercises and then a few dribbles...more breathing and then a few more... Sometimes, I will eventually get a stream going and actually void my whoppin' usual 60-90cc. But sometimes it is never more than dribbles. If I am home I get a book or my journal and just sit on the pot for 30 minutes and dribble away until I feel some relief of the pressure. Sometimes I have to go take a shower to relax and then pee in the shower. (Gross, I know) That usually only happens during my post DMSO treatment flares. But has happened a few other times too. It also happened a lot when I was on detrol. That is certainly not weird for IC patients. I know some ICers end up having to cath themselves sometimes. :(

That is what is so MEAN about IC. Somedays you have to pee all the time and the urine just leaks out on it's own in between and you get so frustrated. And then other days you are hurting so badly and the pressure is becoming so strong and you can't pee for nothing!!! AAAAaaaahhhhHHH!!! :headbang:
And people wonder why we get so emotional!! Hmph....

[Mikki H]

oh thank you thank you thank you - it seems to be coming all together the more I ask and talk in these forums.

I kept hearing and reading about everyone going all the time, so much and my doc was scratching his head a bit when I was saying that I don't go 10-15 times or more every day, but only some days.....

Hey, I don't think peeing in the shower is gross. It's my best pee of the day - lol and after all you are in the shower so...

I think after my little dinner of spag sauce last nite, I'm beginning a flare up now... I feel stupid, but hey I just couldn't believe that spag. sauce was not my friend anymore after such a long love affair - now I know....

[1tuffcookie]

Mikki,

I'm like Kelly--I have to turn the water on every time I need to go. I try not to think of all that water going down the drain...shh! Don't tell any water conservationists! I hate it when I have to go in a public place; if you turn the water on and go sit down, 2 seconds later someone comes in and turns it off! One time on a long car trip, I wore a Depends or something like that just in case there were no restrooms or places to go. It was the desert--nothing to hide behind or anything. So I tried to just let it go, but no luck. I've noticed that some of my meds make it harder to start the flow, too.

[Mikki H]

Thank you. I can't say how much it helps to hear that others have the same symptoms. That sounds cliche-ish, but really. Right now I'm in a bit of a flare, it's getting worse and I'm drinking as much water as I can take in and I also popped a few pyridium. I note that the water does help a bit. I don't turn on the water (I had to laugh at you turning water on in public and having it turned off!) but I have to sit forever, breathe just right and I find if I rub my fingers together (??) it sorta brings it on, and if anyone walks in the room - I have to start all over and of course this hurts! My husband has learned not to talk to me when I'm on the pot. I'm just diagnosed and trying to absorb all of this and it IS a lot to absorb.

I ordered 3 books from Amazon today, the IC survivial guide, "You don't have to live with IC" and the Taste of good live by Bev L. I"m looking forward to receiving those. It'll be good to have a reference that you can read over and over to take it in... KWIM? Oh, and I also bought Prelief today.

[1tuffcookie]

Mikki,

I'm in a flare right now, too. Not fun! I'm doing the same things as you: guzzling the H2o and popping Pyridium. I finally called my doc. I've been taking the anti-inflammatory, Bextra, for a while, at 20 mgs. He said for a few days I could double the dose. I took an extra pill last night, and the swelling has come down some already. I'm going to put a post about this under the flare section of the forum. Perhaps it could help someone else. I have to take 2 meds for my stomach, too. Otherwise, I wouldn't be able to hack an anti-inflammatory.

Mikki, you are on the right track, doing all the right things! It's great you ordered books--knowledge really IS power. I did the same thing when I was diagnosed.

I'm glad I made you laugh--that was my goal. I have another funny story I'll tell you later...gotta go now. Keep in touch!

[Mikki H]

Thanks, hey I LOVE a good laugh - I have to have it to live and it helps with everything. My fav. shows are funniest home videos or life's funniest moments. Laughter IS the best medicine, until I got IC of course. :D

Do you find that anti-inflammatory drugs help? What is swollen, (if you don't mind my asking). I find that when I'm flaring, it hurts almost on the outside of my urethra and I constantly have my hand pulling my underwear away (lovely). My nurse told me ice pack, but I haven't had the guts to try that yet, it just doesn't sound pleasant - I want a Rx for lidocaine - I go back June 1 and will ask about that. HOpe you're doing ok today.... I upped the shipping on my books to get them faster!

[Kiki42]

I am sure glad to hear all of these comments. I have IC since 1998 and I hate it. After all this time, I am learning to cope and live with it. I, too, double void. Many times I go into the bathroom and sit and sit and sit. So I get up and walk around for a couple of minutes and low and behold, I can go. After all the years that I bragged about how long I can go without a pee and now it has come back to haunt me. By the way I used to post on these message boards. I was away for a few months and am just now posting again. However, when I went to login I could not remember my user name. So here I am again and it is good to be back. I was shocked to read about Aunty Deb, she was a real angel, indeed.:angel:

[1tuffcookie]

Anti-inflammatories are like some of my other meds--I start thinking they're not helping, but then if I quit taking them I get much worse. So yes, I think they help. What's swollen is my abdomen. It's what we call the "IC belly." It looks like you're 4 or 5 months pregnant! It's very uncomfortable.

Ouch! That's a bummer about your urethra. Mine doesn't usually hurt, but it's pretty sensitive. I'm always amazed that some ICers can catheterize themselves at home. I'm like NO WAY am I doing that! Even when they use Lidocaine, it's a killer.

I agree about laughter. I think the reason it's so great is because, like exercise, it releases endorphins, our natural painkillers. I'm all for hugs, too. I read one time that we each need 12 hugs a day!
Here's the story I was going to tell you: My husband and I were on a long bus ride in the Philippines. It was hard because we went for a couple hours without a bathroom break. I guess I wasn't the only one suffering, because finally this one dude staggered down the aisle to the driver. Clutching his crotch, the guy pleaded with the driver, "Please, I'm begging you! Just pull over and I'll go out the door!" The driver did. I yelled, "Hey, what about us women? We can't do that!" He either didn't hear me or ignored me. When we finally stopped at a real restroom, I zoomed down the aisle, vaulted down the stairs, and practically trampled anybody or anything between me and the bathroom. Oh, that reminds me. My bladder also gets shy if the restroom and/or toilet is too dirty.

[Mikki H]

Kiki, isn't it good to know that it really does make sense finally - the weird symptoms sorta come together and you don't feel crazy anymore. I was so glad to hear about the shy bladder thing, bc I think I thought that since I'm not always going many many times a day that I didn't have IC, but I think I feel better knowing I do and that I can learn about it and start to do better.

tuffcookie, my bladder is shy in public restrooms mostly because someone could come in and I have to hear them move around the room, etc. Actually, with IC it's gotten better bc the frequency sometimes will override the shyness!

I'm doing ok today IC-wise, I did take some Prelief earlier, but I'm not stinging like yesterday and the day before....

I'm keeping a symptom journal, are you?

oh yeah, and catheritize at home!!!!! NO!! I couldn't even take it in the procedure room. I did do better last time bc the nurse could tell I was nervous and I told her it was very painful for me so she put 2 of the "little gell pack things" in for me - it helped. I DREEEEAAAAAAADDDD being cathed.

[Anita4]

Sometimes whenI am trying to pee I will have to lean my body to the left and place my forehead on the wall and I can go alittle and then when the pee stops but I feel there is still more........I lean my body to the right of me and I am able to go a little more.
I know this sounds silly, but the leaning in different positions seems to relieve my bladder a little.
Hope you feel better soon.

[Mikki H]

that does not sound silly at all. I lean different ways too and what I do that sounds silly to me, is rub my fingers together - it's a sensory thing or something....

I just ate a donut or two, I hope it's on the probably ok list of IC friendly things to eat....

[1tuffcookie]

Mikki,

The thing about diet is, everybody's different. It would be a whole lot simpler if a certain diet worked for everyone, but it doesn't. Just like all the treatments for IC! I would guess that if the doughnuts do bother you, it might be related to yeast. Yeast like sugar.