How is it for you?

[dreamy]

How often do you feel the need to go to the bathroom? Is it constant but you ignore it? Do you need to go at least once every hour or every 30 minutes or less? Do you always feel like you could go but you just hold it? How long can you hold it? Do you ever get a break from the feeling of having to go and do you ever experience no feeling of having to go in between voids and how long is it before the feeling is there again after going? Are you always aware of your bladder? When you go places do you just hold it the whole time and have that gotta go feeling but do things around it anyway? How long did it take for this to get better for you or are you still dealing with this? Has anyone with IC had this and now voids more normal? I would like to know how it is for others with IC. It would be helpful for me and others trying to deal with this issue.

I am having a difficult time with frequency and feel the need to go minutes after voiding. I am going anywhere from 4 ounces to 1 cup. I go approx. every 20 minutes lately but start feeling the need to go within 3 minutes after already going. I have a full bladder feeling constantly and always have some urine to pee out. I cant go to the bathroom every minute so I do hold it in for a reasonable amount of time. Its making me feel miserable. This is so stressful! I am trying to do all I can to help this. I dont know whats worse pain from ic or the frequency. I think frequency and urge is a type of pain because of how uncomfortable it is.

[my3boysmcr]

I was in bad very bad shape with thsi over the summer. In fact, it took the ever increasing frequency coupled with clean cultures to lead me to my IC diagnosis. That said, I used to go about 30 times a day before I went to the urogyn. After she did my cystos (one in office, the other under anesthesia) and biopsy, the frequency/urgency doubled. It was horrible! I was like that for about 3 months. Things settled back down to about 30 times a day and have slowly improved from there. I don't keep track of how often I go anymore. I'm sure that if I did, I would see that I still go too much compared to how often my doctor says a normal bladder needs to empty. But, most days I can go to the store wihtout using the bathroom anymore. That is HUGE compard to not being able to even get tot he store at my worst!

[leelee88]

Dreamy,
I have this off and on.. Sometimes I have a strong sense of urgency and other times I am fine. Like I have said before my meds have gotten most of my IC under control. I was a train wreck before..

[lisabar36]

I am with Ronda on that one. I think back in September before I started my meds and instills, I was going every 15 minutes some days. It varies for me, I have my good days and bad days, if I eat something and get bad frequency, I can go as much as every 15 minutes. It depends on the day if I am able to hold it or not, if I am having pain and I need to go, then I have to go. One of my main symptoms is frequency and pain, I have pelvic floor problems so the feeling that I always have to go when I relax my muscles is always there but I can hold it sometimes.

[ICNDonna]

I always feel like I need to go again for about ten to fifteen minutes after I urinate. Once I get past those few minutes, I can usually wait an hour in comfort before I feel like I need to go again. If I stray at all from my IC diet, I'm back to every half hour until it gets out of my system.

And I have more frequency if I don't drink enough.

Donna

[Tara_09]

I use to have to go about every 45 minutes to an hour before I started any medication. I would have a couple of days when I could hold it a little longer and I would also have days when I would have to go every 15 minutes. There were alot of times when I would feel like my bladder wasnt empty. It would vary day to day. Right now I am not taking any medication except for pryridum and have had a bladder cocktail and am Currently only having to go about every hour and a half but can hold it for close to two hours if I have too. There are days when I feel the urge to go but I try to ignore it. Sometimes it seems like if I ignore it for about 15 min it will go away for a little while. I do believe what has help me the most is the IC diet. I didnt realize that certain foods were a problem for me until I started the diet. When I urinate I dont void over 100 ml and Its usually closer to 50 ml. Sometimes when I go to the doctor and they do a bladder scan I will also have retention. Has your doctor ever scanned your bladder to see if you are retaining urine?

[Claredale]

Dreamy, I was very much like the others for years. It wasn't unusual for me to feel the need to go to the bathroom every 15 minutes. and it was common to feel the need to pee right after I finished pretty much every time I went to the bathroom. I had a 30 minute drive to work and I had to stop at least once and just pee a few drops. At work, I was glad my desk was close to the bathroom. I dreaded movies and car trips more than anything. I knew where every bathroom was in the stores I went to. I could only empty my bladder by actually going using a toilet. I know some people post that they were diapers or have things to pee in during car trips. I was never able to do that....believe me I was desperate enough to try many times! I remember my entire family went on a trip to St. Louis. We told the family to go on without us, since I would require more stops. There were very few rest stops or exits during alot of the way. By the time I got to St. Louis, I was in a flare from holding it, so I spent most of my time that week staying in the hotel room while the rest of my family enjoyed their vacation. We used to go on family vacations every summer. I never was able to enjoy being in the family "caravan" because of my urg/freq. Last summer we drove to Orlando and that was the first time in a long time that we were able to stay with the family on the road. There were times we stopped that I didn't even need to go! There were 4 kids under 8, so there were more stops than normal, but it wasn't because of me!

Now after trying many med combos and treatments including the interstim, I am actually as normal as any other person. The only time that I have urg/freq is in the evening when I have first started settling down, but it's not like it was at all. I can watch movies at an actual theater. I can actually feel comfortable not sitting at the end of an aisle. I can drive to see both my sons for a visit which is a 3 1/2 drive for either way. One lives in Birmingham and the other goes to school in Murfressboro. I can outlast my husband now on car trips! As long as I continue to stay away from my triggers and take my meds, I actually forget that I have IC. So I went from going probably 50 to 60 times..nighttime was miserable! Now I don't have urgency at all during the day. I normally wake up with urgency about 2 times on average at night. During the day I can hold my urine if necessary without having spasms after I empty which was my main problem for many years. That was my main trigger for my spasms and pain. I am so grateful for my doctor and pray that my meds will continue to allow me to live this way. There were too many times to count that I never thought I would be "normal" again.

Tracey

[mary124]

Usually, in the mornings (early say around 2am and then when I first get up do I have the urge to go within 10 minutes or so. Other than that, once I am up I usually can wait for over an hour before having the urge again. ( if I wait much longer after this time, then I have LOTS OF PAIN.) But thankfully the medications seems to help me.

[traceann]

Reading Tracey's story sounds a lot like how I was:) I can remember one Thanksgiving where we met my inlaws at a restaurant about 3 hours away, and as soon as we pulled out of the driveway I swear I had to go again - and I had just gone before I walked out the door. I was fine til we got to our destination (crazily enough), and then the every 10-15 min sprint to the bathroom started. Finally, when I just couldn't stand the feeling anymore I asked if we could leave (hubby's grandma had had a cottage in the area, so we went there while the rest of the family finished dinner) - that way I could use the potty as frequently as I needed to, and not walk past the same table of diners another 50 times, lol ;) It was so emabarrassing!!!

And that was in the early days - before my meds started to do their thing. There were days at work, where I was in the potty every 15 minutes. There were voiding diary entries of 40+ trips in one day - not counting night trips. I'd just get done and feel I had to go again. That's how an irritated bladder responds, it really doesn't have too many ways to "express" itself ;)

Some days were worse than others, diet really made a difference in that as well for me. It can be maddening - I think just about every one of us has had the "but I was just in the bathroom!" thoughts along the way. I did find that if I held out as long as I could until I knew that by the time I gave into the urge to hit the bathroom I REALLY actually would have to pee, I did better. If I gave into the urge all the time, that would set off my spasms as well. If I actually had something fairly substantial to void, I did much better.

The constant full-bladder feeling for me was just par for the course with IC. :( Once my meds started to do their thing and I was good with the diet, found my triggers etc, life pretty much resumed to normal, with just a few extra considerations that other people didn't have. But that was ok, I was feeling decent and it was worth it! ;)

[dverba]

I do feel like I hold it all the time. I try not to think about but so hard to do. I had to take a drug test for a new job I am applying for. The nurse told me I need to come prepared to pee in a cup. NO PROBLEM! It is better now that I have been on the diet for a couple of months. Some days seem more depressing than others. Just hang in there..We all know what it feels like.

[navemj]

I have frequency a lot. I am now doing better since I went off Yasmin birth control. I have no idea why, but when I was taking it I was going to the brathroom every 30 minutes. But after I cut down my salt intake and went off the birth control I am back to normal. Just some pelvic pain around the bladder. My doctor is trying me on a different pill. Hope it don't do the same thing.
Maryann

[formom]

I too remember those days. With patience in finding these right treatments with meds and supplements, thank God:angel:, the frequency and pain subsided big time!!!!

Not to loose track here, but what is sad about this disease is when I was speaking to a cousin of mine about being diagnosed with ic, she said "oh a girl in work had that. She would go to the bathroom constantly and she would be in pain when she peed and when she didn't pee." So I asked her how the girl was doing, and she said "oh I don't know, she got fired!"

How nice is that? It just makes me sick that people have no idea what we go through. To have to the urgent need to go and the pain is just awful! My cousin works at a law firm also. Shame they don't research this disease!!

Sorry, just made me sad for that poor girl who will probably not be able to afford her meds now that she is fired for being sick. :rant:

[dreamy]

Hey all I really appreciate each and every comment. It has really helped. Trying to deal with this does get hard but its support and hope that can really get you through. I needed others with IC to help me know things will get better and they do get better! Your right about the bladder reacts when irritated. I just need to focus and stay positive although I feel so bad right now. It does get better.

I was just thinking about IC and all the things you read about IC and you wonder if once you have IC is how you feel currently stay like that always or does it improve over time. Then when you are struggling with your symptoms for a long time you start hoping and praying things do get better and need to know that others can relate and have been there and now they are better so you know its just a phase and IC does improve over time. Thats the best motivator when having a rough time because you have something to look forward to. Im really worried about all of this. Im mostly frustrated because I just want to go back to normal. I wanted to have more children and how I feel right now I dont see how I could comfortably and that hurts me more than anything. If others with IC do feel better eventually that gives me hope that I can have a normal life. I want to be positive about this although going through it does cause you to feel upset at times. I am very happy that people seem to be okay after a while and things get better.

Currently, I feel like I cant go anywhere because of the symptoms and I really think I should get out and try to do more things like I would usually. I am not getting enough excercise like I normally would. I was active before but I have been more sedentary since the IC. I guess I will just have to start trying to excercise and just hold in my pee. Its so miserable to do that though. Do you just workout and ignore the gotta go feeling? Its kind of hard to ignore. I will just have to do that because I want to be fit again like I was before.

[dreamy]

Hey formom, I hope that she gets another job that respects her and does not treat her differently because of IC. There should be more tolerance in the work place for such things.

[my3boysmcr]

Currently, I feel like I cant go anywhere because of the symptoms and I really think I should get out and try to do more things like I would usually. I am not getting enough excercise like I normally would. I was active before but I have been more sedentary since the IC. I guess I will just have to start trying to excercise and just hold in my pee. Its so miserable to do that though. Do you just workout and ignore the gotta go feeling? Its kind of hard to ignore. I will just have to do that because I want to be fit again like I was before.

I have never been one to work out so I can't speak to that specifically. But, I have always been active and did have a lot of down time over the past year especially. On a good day, I can coach my kids' soccer team by actually getting out there and playing the game with them to teach them strategies, etc. On a bad day, I am at the field with a little potty in the back of my best friend's van so I don't have to use the dirty porta-potty at the field. Running makes me feel a LOT worse when I am in a flare. Heck, so does sitting. People look at me like I am crazy when I don't bring a chair to sit at a game when my hubby is coaching! Anywa, I am not able to be active like that when I am feeling the way that you describe. Therefore, I would say that exercise would be out until the symptoms improve. I don't have the ability to ignore that intense feeling. Good luck!

[Bea]

I constantly have that frequency urge, and just try really hard not to think about it.. sometimes I can go to the bathroom every few minutes.. i hate it.. otherwise.. sometimes I can go 30 min without... or 45 on pain killers..