Question for those with frequency issues

[phoenixgirl]

Do you get some relief from peeing?

My uro said that in her experience, a lot of people with IC feel burning or pain as the bladder fills up and voiding helps that even for a few minutes. I feel like I have to go pretty much all the time but I wouldn't say that there is "pain" or "feeling like ground glass in the bladder" type sensations. It's more of just feeling like I haven't gone for hours, even if I have just visited the restroom. There really is no time that I get relief from the full-bladder feeling, even while I'm going! I am just wondering if there are others that feel this way, too?

[lalarainbow]

I have that feeling often.. Pee and there is no real let up. I do find that Detol la helps. but I only can take that occasionally because it constipates me and that just makes things worse..

[phoenixgirl]

I know what you mean, lala. I tried Sanctura XL but didn't seem to help much. The doctor said that she didn't believe I have OAB so we'd try something else. For whatever reason, last week things seemed to get worse and I was going every 10 minutes. I begged her for something and she gave me oxybutynin. I've been on it for about a week with no change in frequency yet but my mouth is so dry that my voice is even hoarse and the constipation is only aggravating things. I'm so frustrated over trying to find something that will help with the frequency. I'm starting to think that it's unrealistic for me to expect to be able to hold it more than 1 hour.

[lalarainbow]

yes Dry mouth is a side affect-- I tried the patch which did not seem to help my frequency and it left a red patch on my skin and I did not like that much ..The patch does have less side affects but just did not work for me..

frequency is so annoying-- and I only hold a cup in bladder so I go alot!

[earthlady]

Gelnique, which is the gel transdermal form of oxybutynin seems to have way less side effects than the patch or pill form. I had no constipation at all with it, and very little dry mouth. Of course as we all know we all react differently to these meds, but it may be worth a try.

[izazen]

I find that sometimes the urge can get into my head! If I know I really don't have to go yet I feel like I do I can be pretty sure I'm bearing down on my lower abdomen and pressing on my bladder - its part of my general anxiety syndrome. I do this when I have a busy day coming up or have to do something I don't want to do.

When this happens I stop, slow down my breathing and be sure I'm not doing shallow chest breathing which opens the door to "bearing down" but, instead, 'am taking nice, calming breaths the type that make your stomach rise and fall.

Also to dissuade myself of the feeling I often pinch my anus muscles together for 10 or 20 seconds then release slowly (that's the key.) Also push your butt out - it re-arranges your internal organs slightly so they aren't pressing on on another.

May sound crazy but (!) it works for me. When it doesn't, however, a heating pad will calm me down real good!!

[kadi]

When I first got IC, I felt like I had to void all the time. Elavil helped significantly with that sensation. Home instillations of heparin, marcaine & sodium bicarbonate also help too.

[skybluesoul]

I have the exact sensations you describe. I'm still searching for the right combination of meds/diet to help. No matter what I drink, and most of the time it's water, I still have frequency issues. I haven't tried any overactive bladder meds except Gelnique, which gave me some side effects I didn't like. Maybe I should look into other options.

[musiclover]

Oh yeah, do I ever know what you're talking about! I used to feel like I had to go immediately after I went. On a good day, I would get about five minutes of relief before the sensation would come right back. But over time I've gotten a lot better so I don't feel like that most of the time any more. But I did feel like that for a good year and a half or two years.

[phoenixgirl]

Oh my goodness, musiclover, two years?!?!?! I really don't know how you were able to take it for that long. It's been two months for me and it's literally messing with my head. I haven't been able to sleep, which in turn makes it hard to think or concentrate on anything other than the fact that I have this freakin' spastic bladder. I started on amitryptyline (25mg) a few nights ago and so far it's been great. For the first time in weeks, I was able to string more than 2 hours of sleep together. I still feel tired but I think that may be a combination of being sleep deprived for so long and my body adjusting to the new medication. I also started on vesicare and got my first elmiron instill on Friday. Not sure which one of those are responsible for taking the edge off but I was actually able to go to an exhibit yesterday. Simple thing, but I wouldn't have even tried that 2 weeks ago when I couldn't go 15 minutes without hitting the restroom. I'm definitely still very aware of the freakout my bladder apparently still is having but I feel like this course of treatment might have me on the right track. At least it's something to give me hope.

[Zygala87]

Being one of the few who has opted for Hydrodistentions, the way I know I must have another is when I have horrible frequency. I go from sleeping 7 hours to getting up many times. I have pain and other problems but the frequency is the most terrible part for me dealing with IC. In my case the HYDROs really help. In about a week I return to something normal. Sure not pushing HYDROS for all others. This is just what works for my body. I have a good Doctor who know what he is doing. Hard to find. I hope you find something that will work for you. Hugs, Ziggy

[phoenixgirl]

Ziggy, yes, the frequency is near debilitating. People just don't understand how difficult it can be to 1) have that horrible, horrible sensation and discomfort ALL THE TIME, 2) Have to change plans or forgo activities because there isn't a bathroom around, and 3) try to deal with the social consequences of people wondering why you have to jump up and leave every few minutes. I'm lucky in that I haven't had the severe pain that some have described on here and I'm afraid that if I elected for a hydro, I could make my situation worse. It's bad enough with the frequency; I honestly don't think I could take adding another factor into the mix with this condition. I'm so glad the hydros have worked for you, Ziggy. Just out of curiosity, for about how long do they hydros usually give you relief before you have to get another one?

[musiclover]

Phoenixgirl, sorry I didn't mean to scare you. It took 2 years because it took me a while to try various treatments and find out what works. But you can feel better much faster than that with the right treatment. I highly recommend PTNS treatments for that type of frequency. They take several sessions to work but for me it became a sanity saver while I waited for Elmiron to help me. Anyway, I can't recommend PTNS enough!

[phoenixgirl]

Thanks. I would like to look into it. How might I go about finding a practitioner that performs that treatment? How did you find yours?

[polygon]

I've had frequency for 7 years now, even in my small "remission" the best I got was going every hour. I usually get a few minutes of relief after I pee, but by ten minutes in, I feel like my bladder is about to burst. When I went to my new uro the first time (when I was dx'd) he checked my bladder via in-office ultrasound when I asked to use the washroom (it had been about 30 minutes into the appointment) he said I was only holding 10mL, despite my bladder going crazy.
So far, elavil, bladder retraining, and Detrol LA have been working, although I still get spasms - just not as many.
The one thing I think is good with hydros, is that you can find out exactly what your bladder capacity is, and hopefully keep it stretched out further than before.
I read on this forum that if you keep peeing in short intervals, your bladder can shrink or adjust to only holding that amount, and the frequency just gets worse.
Good luck, I'm sure everything I wrote is stuff you already know :P