Frequency question

[born2swim Angel watching over us Find all posts View Profile Close born2swim]

I have another question (bare with me guys)!. My worst symptom is this constant, unyielding, never-ending need to urinate. As my bladder fills, the worse it is. Even if I empty, it doesn't go away. I know that pain is the most common symptom with you guys... but does anyone else have this never-ending urge to pee? Do your meds actually cut down that feeling? I'm on Elmiron (oral and instills), Atarax, and Ultram. I can't take Elavil.

This feeling is driving me nuts!

Thank you for your help! This is so hard for me!

[Berkshire Road ICN Member Find all posts View Profile Close Berkshire Road]

I think pretty much everyone has that feeling.

[jjt001 ICN Member Find all posts View Profile Close jjt001]

Yes, when my bladder is irritated I feel like I have to go all the time. Luckily I can take Elavil, and when my bladder pain is under control I don't have that urge. However, whenever I get a flare-up (they're rare, but they do still happen) I get the never-ending urge to go along with the pain.

[leelee88 Support Volunteer Find all posts View Profile Close leelee88]

YES!! That was my main problem.. I always had that feeling but also with throbbing to.. My GYN put me on Cymbalta she said it treats nerve pain, but also helps with depression.. It has help with both for me.. I also was taking Elavil but have to stopped due to it was making me gain to much weight very fast, so I am praying the cymbalta will keep that urge feeling away..


Ronda

[L. Thomas Support Volunteer Find all posts View Profile Close L. Thomas]

I not only had frequency but I always felt like I needed to pee, even when I just got off the toilet. I just always felt full. OAB meds didn't work. All they did was reduce the stream to basically a dribble and did nothing for frequency, fullness, or urgency.

[born2swim Angel watching over us Find all posts View Profile Close born2swim]

Carolyn, I guess I just thought that most of you guys have moments with strong urges, but I didn't realize that the 24 hour, unyielding feeling was typical. Thanks for clarifying that for me! Boy I'm learning so much from you! Thank you!

[born2swim Angel watching over us Find all posts View Profile Close born2swim]

jjt001, boy I wish I could take Elavil! Sounds like a lot of people get help from it! Thank you for sharing with me!

Yes, when my bladder is irritated I feel like I have to go all the time. Luckily I can take Elavil, and when my bladder pain is under control I don't have that urge. However, whenever I get a flare-up (they're rare, but they do still happen) I get the never-ending urge to go along with the pain.

[born2swim Angel watching over us Find all posts View Profile Close born2swim]

Rhonda,

I can't take Elavil, but you say that Cymbalta helps you a lot? Maybe I'll ask about it next week at my next instill.

Thank you for sharing that with me! I am grateful that I can sleep better with my current meds, but I hate being awake because I can't stand this feeling!

YES!! That was my main problem.. I always had that feeling but also with throbbing to.. My GYN put me on Cymbalta she said it treats nerve pain, but also helps with depression.. It has help with both for me.. I also was taking Elavil but have to stopped due to it was making me gain to much weight very fast, so I am praying the cymbalta will keep that urge feeling away..


Ronda

[born2swim Angel watching over us Find all posts View Profile Close born2swim]

L. Thomas, so have you found a way to treat your symptoms better? I am in the early stages and everyone says it will get better (I HOPE SO!).

You sound exactly like me (those OAB meds gave me wicked retention and I had to strain to give a trickle).

[L. Thomas Support Volunteer Find all posts View Profile Close L. Thomas]

Home Instillations work for me. I know that there are a lot that have problems and this doesn't work for them.

I have several signs that tell me I need an instillation. The full feeling and waking up more than 4 times at night or going more than every 90 minutes tells me it is time to do something ( and of course the "walkin farts" is alway a dead give away! I think self-cathing takes care of some of the problem because it truly empties the bladder but the meds calm everything down and that gives the long lasting results.

I don't have the problem with going after the shower if I have had an instill within the last 2-3 days. My urogynecologist always tells me not to let the symptoms get ahead of me. It is hard to play catch-up. So I really don't try to put off doing instills.

I had to increase to at least once a day in the beginning because I was trying to "stretch" the instills. But as time has gone by I don't alway have to do an instill everyday. Sometimes I only need one a week and I think..."IC's gone"...NOT. I think I have finally realized that for me IC is like being diabetic. Sometimes it is in check (for whatever reasons) and sometimes it is not. Instills are my insulin.

[born2swim Angel watching over us Find all posts View Profile Close born2swim]

L. Thomas,

My doctor hasn't mentioned home instillations to me (not yet at least). I was diagnosed 3 weeks ago. What is in your solution to make it help (just lidocaine, bicarb, and saline... or is there something like Elmiron or heparin). Thanks!

[L. Thomas Support Volunteer Find all posts View Profile Close L. Thomas]

There are tons of recipes. Mine is pretty simple (in my signature). It is the only one that I have used. At one point before I knew what to watch for my urogyne suggested adding elmiron to the instill but I didn’t want to add it. I’m glad I didn’t now. It wasn’t the recipe, it was me not figuring out when I needed an instill.

[born2swim Angel watching over us Find all posts View Profile Close born2swim]

I was hoping that after 3 weeks, my symtpoms would have been more improved... but that being said I am sleeping better. I don't know if my doctor does home instillations, but I will definately keep that door open. I really need help. I have been miserible for the last few days (and except for Sunday) I have followed the diet to a T.

Thanks for your help!

[L. Thomas Support Volunteer Find all posts View Profile Close L. Thomas]

IC is tee-totally unpredictable. You may very well be completely under control in 3 weeks but you may have symptoms for years or a lifetime. That doesn’t mean you won't find a solution that works for you. I am not the least bit concerned that I will have IC symptoms forever. IC is a lifelong disease that has no cure, only effective treatment. My treatment takes care of my IC. If you have read on the boards you know that finding a doc that will treat IC appropriately is more than ½ the battle.

[**Angie** ICN Member Find all posts View Profile Close **Angie**]

I like Urelle for the times that my bladder won't let up or when traveling. It turns your pee a pretty blue too.