IC and urgency to pee!

Hi Leah, first of all I’d like to say I’m so sorry to hear what to me Is sadly a very familiar story.  There are a lot of medics out there who are not very informed or even aware of IC and it can be hard to find a sympathetic and knowledgeable one! Now that you have a diagnosis and are trying some treatments you can begin to do your own research and become your own expert which all of us with IC have to do.  There isn’t any one treatment that’s a cure-all but it’s really a combination of things.  There is an IC food list app you can download which is brilliant at advising what food/drink to eat and not eat.  An inflamed bladder is very sensitive and changing your diet is probably the most effective thing you can do to help.  Briefly avoid caffeine at all cost (even decaf has some left I it) chocolate, citrus fruits, hot spices, artificial sweeteners and carbonated sodas.  There is a product called prerelief which you can take if you’ve eaten the wrong thing by accident - it reduces the acid content before it can do any damage.  You could also try an antihistamine (I was recommended hydroxyzine building up to 50mg at night) that also helps with inflammation and sleep.  Above all drink plenty of water - 8 glasses a day.  For me that was the biggest challenge as the last thing you feel like doing is anything to make you need to ‘go’ more often!  But it really was good advice - concentrated urine is very irritating to the bladder and urethra and it’s this that makes the urgency and frequency worse.   At first you will be pee much more as your body gets used to the extra water but if you persevere it will get used to it and you won’t go as often.  Another thing you could ask about is something called PTNS (percutaneus tibial nerve stimulation) - it’s a kind of accunpuncture (via your ankle) and is usually a 12 week course of half hour sessions.  It has a very high success rate for the urgency feelings and I’ve found it helpful.  (It’s also called ‘urgent PC’ ).  I hope this has been of some help.  I know how miserable this condition is - my urologist also said to avoid stress but agreed he didn’t know how! Don’t give up hope - most of us with IC manage to keep it under some sort of control by doing our own trial and error stuff (hopefully not too much error ) it’s a nightmare when you’re first diagnosed but when you start to take control it does become easier I promise! I Wish you well. 

sorry to hear about your situation at your age,, mabye was started by something your ate or drank.  i am allergic to dairy and once my bladder spasms/pain  start they continue,, therefore  i recommend trying Elavil.  it may make one sleep but start slow. work for me- just taking one 

Hi Leah, I’m sorry you are going through so much with this IC stuff...it’s awful, isn’t it? When I first began with this it was nearly two years ago and I was in dire straits until I learned how to deal. I read the response here from Shirley and she is right on the money. Change your diet..strive to be on as alkaline as possible. In addition, drinking lots of water may seem bizarre because the urge to go to the bathroom is already so high...but this is a cardinal rule with IC sufferers. The other thing is, depending on where you are, there are these aloe Vera freeze dried capsules which do help me quite a lot when I am in the midst of a bad flare. In England the capsules are by the company Pukka (can’t get them in the US). Here in the states I use a brand called Desert Harvest. Their extra strength capsules are pretty good and do help to quell a flare. Also, besides the bad foods and bevs bringing about a flare, in addition, stress can bring one on, too. My gyn explained to me that as long as there is no heavy bacteria content known, antibiotics will absolutely not help and all that does is wipe out the good flora in the gut. IC is not an infection.I also find that if I’m not already in a bad flare that exercise helps me..especially Pilates. There is also physical therapy for IC which is done as pelvic floor therapy. I hope the switch to IC friendly foods helps you. In addition, one other thing...many of these urologists just don’t know enough about IC to make any concrete recommendations so be careful with some of the more invasive procedures which stretch the bladder. I have read stories on this forum from women who say such procedures have left them incontinent. It is a struggle but it can definitely be a lot better for you than it is now. At the beginning of my journey with this I never thought that would be possible. I wish you all the best.

Hi really sorry to hear about your problem. I'm now 33. I had the same problem as you when I was 31 and I still have it. Day to day i experience pain in my bladder and when I pass urine. It's like a burning sensation and sometimes I wish I could place some ice cubes to stop the burning. I went to my GP they gave me anti biotics. This didn't help. I was the referred to the urologist who said after placing a camera in my bladder that everything was fine. They then said I have painful bladder syndrome...ive been controlling my pain via my diet at the moment. Don't eat any acidic foods. I've also been taking d mannose which helps. You can get it off Amazon.

I agree with the advice to drink more water.  At the start  after my IC diagnosis my GP prescribed Tolterodinr (Detrol) 2mg twice per dayto calm my bladder and reduce the urgency / frequency.  I was able to retrain my bladder over a couple of years and have stopped taking it now.  I follow the IC diet, have monthly Cystistat bladder instillations, take Prelief with every meal and Azo Max Strength when I get a flare.  This keeps everything in reasonable control but doesn't fully take the bladder pain away, I just have to live with that.