Has anyone found anything that helps with urgency/gotta pee feeling?

[shawnster]

Hello all,

So, I'm just starting out on this crazy journey and I have found a few things that have been helping me, however, I can't seem to do anything about the urgency/having to pee all the time feeling.

I was wondering if anyone had any success with any treatments, drugs, supplements, therapies that helped with that "I've always got to pee" feeling?

Even if it's a remote shot, I'd love to hear about it.

shawnster

[VickiB]

You'll probably get a variety of answers on this one.

For me, I'd say the most effective thing I do when I get that urgency/ gotta go feeling is to increase the amount of pure, untreated water I drink. It seems backward to drink more to have to go less, but it works!

Vicki

[shawnster]

Hey Vicki,

Do you mean like distilled water?

thanks!
shawnster

[VickiB]

I drink spring water. The additives most municipalities put into their water supply can cause tap water to be an irritant for some IC bladders. I know some people here go so far as to check the PH of the spring water they drink. I've never done that. I just go for any spring water where water is listed as the only ingredient.

I think this works for me because my frequency/ urgency symptoms are most always triggered by having eaten or drank something I shouldn't have. Increasing the water helps to flush it out of the bladder.

[Zygala87]

A hydrodistention worked the best for me. My urgency stopped very soon after. It was terrible before I had it done. Up all night peeing only to pass a spoonful. Never being able to be far from a bathroom. OMG it was so depressing. Sadly what might work for me may not work for others. I had a Doctor who has done this procedure often. I think he only used saline and not chemicals. Elmiron works for me and I have been on 100mgs twice per day for 4 years. I believe it has put a small coating over my bladder. Many people can not use it for different reasons. I hope you get many other replys and I am just sending what worked for me. Wishing you get to a more comfortable place soon. Hugs, Ziggy

[ICNDonna]

Drinking lots of water --- we have a deep well at our house so no chemicals. When we're away from home, I drink bottled spring water.

I also take an antispasmodic when I feel irritation. The one I take is hyoscyamine. It's very inexpensive and for me is very effective.

Donna

[loveslife]

Ativan, Elavil and physical therapy worked for me.

[nottoc4]

1 teaspoon of baking soda in 8 ounces of water ususally helps me. It is high in sodium so be careful if you have high blood pressure.

[musiclover]

I used to go about 60 times a day, no kidding. I'm still not normal but a bunch better now usually anyway. I have tried a whole lot of treatments. The combo that works for me is the diet, prelief and sometimes baking soda with water, elavil, hydroxyzine, 600mg of Elmiron (smaller doses don't work for me), and PTNS treatments weekly. Lately my saving graces are the PTNS and the load of Elmiron I'm on ( talk to your doc before doing this high of a dose). And without the diet I would be in 24/7 pee mode.

[shawnster]

Ativan, Elavil and physical therapy worked for me.

Can I ask what sort of physical therapy? It is pelvic floor work or something else?

Interestingly enough, when I had my biofeedback done, they found out that I had very weak pelvic floor muscles as opposed to PFD. (didn't see that coming) So I actually have to do kegels.

I'm just wondering if some additional work would help.

shawnster

[shawnster]

I used to go about 60 times a day, no kidding. I'm still not normal but a bunch better now usually anyway. I have tried a whole lot of treatments. The combo that works for me is the diet, prelief and sometimes baking soda with water, elavil, hydroxyzine, 600mg of Elmiron (smaller doses don't work for me), and PTNS treatments weekly. Lately my saving graces are the PTNS and the load of Elmiron I'm on ( talk to your doc before doing this high of a dose). And without the diet I would be in 24/7 pee mode.

Percutaneous tibial nerve stimuation? Is that PTNS? I actually had to wiki that! Can you give us feedback on how it goes - I'm curious.

I also see that you are on the Elmiron and Cystoprotek both. My uro opted not to start me on the Elmiron because I was taking the Cystoprotek already and she felt they did the same thing. Again, I'm just wondering if maybe I should've opted for the Elmiron instead but I was looking for a more holistic approach if possible.

shawnster

[loveslife]

Can I ask what sort of physical therapy? It is pelvic floor work or something else?

Interestingly enough, when I had my biofeedback done, they found out that I had very weak pelvic floor muscles as opposed to PFD. (didn't see that coming) So I actually have to do kegels.

I'm just wondering if some additional work would help.

shawnster

shawnster,
it was pelvic floor work for PFD and my muscles were also weak but I also had areas that were hard as rocks. She would do release work on those areas. She also had me doing a variety of modified Kegels to get the nonstop contractions to stop via biofeedback. It was more about learning to feel which ones were tightening up and then release the muscles. The other part of the therapy was using an H-wave machine that was heaven for those areas and gave me great relief! It works differently from a TENS unit.

[jen48446]

:smile tee:cat:I found my issue was hormone imbalance! It took me years to figure it out & to find what I needed!

Watch what you eat & definitely drink as much filtered water as you can. We have City water & I use the Brita filtered dispensers and have for years.:angel:

[shawnster]

shawnster,
it was pelvic floor work for PFD and my muscles were also weak but I also had areas that were hard as rocks. She would do release work on those areas. She also had me doing a variety of modified Kegels to get the nonstop contractions to stop via biofeedback. It was more about learning to feel which ones were tightening up and then release the muscles. The other part of the therapy was using an H-wave machine that was heaven for those areas and gave me great relief! It works differently from a TENS unit.

Thanks for talking me through it - I might see if I can find a PT in my area who specializes in pelvic floor to see if it makes a difference. After you've done your full sessions I would love to know how long it made a difference for and if it's something that you felt had a long lasting effect.

I'm still dealing with the gotta go feeling and it's driving me nuts. I don't really have the pain or burning anymore, but that "deep achy gotta pee al
l the time" is really irritating and depressing at the same time.

[shawnster]

:smile tee:cat:I found my issue was hormone imbalance! It took me years to figure it out & to find what I needed!

Watch what you eat & definitely drink as much filtered water as you can. We have City water & I use the Brita filtered dispensers and have for years.:angel:

Did you request to have your estrogen and progesterone levels checked? I'm just trying to figure out who I go to - my GP, my uro or my OB-gyn for that. Everyone keeps saying get your hormones checked just in case.

And we used to use a brita pitcher, but now we have a built in water dispense with a pur filter. I'm just wondering if it's better to go with something like distilled, but then I'm not sure I can justify it. We drink so much water in this house for the obvious reasons. :)

[loveslife]

Thanks for talking me through it - I might see if I can find a PT in my area who specializes in pelvic floor to see if it makes a difference. After you've done your full sessions I would love to know how long it made a difference for and if it's something that you felt had a long lasting effect.

I'm still dealing with the gotta go feeling and it's driving me nuts. I don't really have the pain or burning anymore, but that "deep achy gotta pee al
l the time" is really irritating and depressing at the same time.

Well, it's been 5 months since I quit PT and I'm doing just fine.The "gotta pee" feeling is now an occasional thing not an every hour thing(actually a constant thing like I'd pee and still feel like I had to pee right after). I could probably do better if I didn't slack off on the exercises and didn't cheat on the diet about once every couple weeks :rolleyes: but now they're just mini flares(gotta pee,burning pee and backache are my combo) and I get them under control in a day or two: Ativan, exercises and heated rice sock on my crotch :smile tee
Cynthia

[shawnster]

Well, it's been 5 months since I quit PT and I'm doing just fine.The "gotta pee" feeling is now an occasional thing not an every hour thing(actually a constant thing like I'd pee and still feel like I had to pee right after). I could probably do better if I didn't slack off on the exercises and didn't cheat on the diet about once every couple weeks :rolleyes: but now they're just mini flares(gotta pee,burning pee and backache are my combo) and I get them under control in a day or two: Ativan, exercises and heated rice sock on my crotch :smile tee
Cynthia

Wow. The heated rice sock on crotch is a new one for me. :) We are so inventive in this group. It's up there with the frozen can of tomato paste between the legs.

[loveslife]

Wow. The heated rice sock on crotch is a new one for me. :) We are so inventive in this group. It's up there with the frozen can of tomato paste between the legs.

Well you know the saying "Necessity is the mother of invention" :smile tee

[CathyKi]

Does anyone know of one? I would like to give it a try. My whole body is stressed out.

[shawnster]

Does anyone know of one? I would like to give it a try. My whole body is stressed out.

Hey Cathy,

Have you posted something over in the PFD section of the forums? They may have some answers for you. I think the IChelp also has a directory for doctors and specialists although I can't say for sure.

shawnster

[LisaLisa67]

I found for me, if I can soak in a hot bath for 15-20 minutes, that helps a lot. When i used to have flare-ups that lasted for weeks and missing work wasn't an option even though I felt like I couldn't stand it any longer, I'd sit in the tub right up to the moment I left for work.

Also found that Vesicare works better than anything else I've taken.

For me, taking 1/4 tab of Percocet with 600mg of Ibuprofen helps a LOT. That small amount of Percocet is "just enough" to take the edge off of the discomfort and not make me feel 'drugged.' Years ago I had a back injury and weighed a lot less and would take 1 whole Percocet tab if the back pain was really bad...............now if I took a whole tab, I'd be flat on my butt. One day when a flare-up was really bad, took 1/4 tab then 2 hours later took another 1/4 and I was so nauseated and felt too drugged, horrible feeling. Everyone is different but 1/4 tab is just enough for me.

In the past, too, I'd drink a large glass of water with a couple teaspoons of baking soda (to alkalinize my urine) and that also helped a little)

[tandem]

Lisa - are you taking Motrin or IBprophen ( used for reducing inflammation )

I have taken 800mg for a long time put read somewhere that it was not good for IC sufferers - so stopped taking it -

Sounds like it helps you -

I wonder if it is OK to take as it should reduce inflammation which seems a big problem with IC folks -

Can anyone else comment on what their take is on Motrin