IC and urgency to pee!

Posted , 8 users are following.

Hello, I am new to this discussion board, but I hope to find someone who may know what I am going through so I can hopefully find a solution. I am 30 years old and been dealing with a urgency to urinate constantly. I cannot think of nothing else and feel totally depressed and miserable dealing with this issue. I have seen two different urologist and I am about to change doctors again to try and find a doctor who may be able to help me solve the issue I am dealing with. In the beginning I thought I had a UTI however when I went to the doctor there was no sign of a uti or bacteria present. I was put on a antibiotic just to see if it would clear up what I was experiencing.  The symptoms did not clear up so I was sent to a urologist and she looked at my bladder in the office with a small camera. She said it was nothing and brushed me off. I changed to someone else in her office because my bladder felt like it was throbbing and lots of pressure and pain. I was put on oxybutnin and this made the feeling worse. I was then put on detrol and that didn’t work. I was then scheduled for a procedure in the hospital for a cystocopy. The results determined that I have IC. The doctor said that my bladder was very inflammed. He gave me Elimoron and now I have been prescribed myrbetriq. I am depressed and feel like my quality of life is being diminished and I need to find someone who may be going through something similar who has found a soulution to this issue or just to chat with. I am seeing another doctor soon to see if there is something else that can be done.

1 like, 18 replies

Report

18 Replies

  • Posted

    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. 
    Report Reply
    • Posted

      Thank you for writing me. I wanted to ask so you went through the same thing and now do you feel less of the urge. I sleep through the night no problem. Yes sometimes I do dream about peeing, but other than that I am fine. I could deal with the pain for the rest of my life but the urge is driving me insane. I have four children and I feel like it makes it hard for me to want to do anything like I want to stay in bed all day which I can’t an don’t do, but still it such and awful feeling. I am on a healthy diet allready I only drink water and I don’t eat very much since I had the gastric sleeve a year ago. I have been trying to figure out how to live like this. Sorry tmi, but did the PTNS help with the urge or did you need that and other things to help?
      Report Reply
    • Posted

      Hi Leah.  The urgency symptom is awful I know.  And yes, it’s one of the symptoms the PTNS is designed to help with, alongside the other more standard treatments.  I’m glad you’re on a healthy diet- but is it a 100% bladder friendly one? Things that can be very healthy for non-IC sufferers can be lethal for IC patients!  Foods high in oxalates eg nuts, rhubarb, and certain veggies can be irritant to an already angry bladder.  I’m going through a flare at the moment so sympathise with you! That feeling of needing to go all the time is distracting and very depressing.  My advice is don’t give in and go pee or you’ll be doing it so often your bladder will ‘forget’ how much it’s meant to hold, and then you’ll need to retrain it so might as well not go down that road! Keep drinking plain water so that your pee is a light straw colour, take painkillers if they help, cystopurin sachets if peeing burns or is uncomfortable.  I hope you get some more help from the next doctor - try eliminating anything from your diet that might be causing inflammation.  Keep a diary to show next doctor when you go and stress the pain and the impact it’s having on your life.  You need to be taken seriously- having 4 young children is hard enough without all this!
      Report Reply
    • Posted

      You just gave me a clue. I love peanut butter crackers and eat them as breakfast every morning. Maybe that is one of my triggers. So why are you in a flare right now as far as the urges? Is there something you did to make it flare or does it do it on its own? I hope there is something that can be done to help me I am on the verge of going nuts.
      Report Reply
    • Posted

      Hi Leah - my flares are usually down to heat (getting dehydrated) stress (my father in law dying) and going off piste re my diet! Peanuts are one of the worst things - stop the crackers and see but remember it’ll take a while before you know as the bladder seems to take ages to calm down once upset! There is a natural anti inflammatory you can take called quercetin which I find helpful when my bladder flares up.  Sometimes it’s bad for a day or two, this time it’s been a few months and I’m not sure why as I’ve had a good run where everything was normal so I know it can get better - as will yours I’m sure.  I had a few nuts and marmalade which is my own silly fault! 
      Report Reply
    • Posted

      Thank you Leah.  He was very old and very poorly so a blessing for him really, but hard on my husband of course.  It’s very stressful dealing with it all, but I do try to limit stress as much as possible by trying to change my attitude to things as much as I can! Keep me updated with how you get on.  Don’t despair - it will get better! 
      Report Reply
  • Posted

    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 
    Report Reply
    • Posted

      Thank you, Yeah maybe your right. I have been on a strict diet for a year and a half. I’m not sure what is going on with me. I just wish I could find some relief. I just made another appointment with another doctor, but it’s not until a month out which stinks. 
      Report Reply
  • Posted

    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.

    Report Reply
  • Posted

    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.

    Report Reply
    • Posted

      Hi yes. Sometimes if I get the urge to go to the toilet then I can't hold it for long. I've also been told that if you hold it then it can cause a UTI. The pain that I experience is daily, it really does impact on your daily living routine. It's also been really difficult to have sexual intercourse because your constantly having throbbing pain...which is awful for you realtionshipship. Because the experts can diagnose me I've had to live with the pain for the last 2 years. They did other me pain relief medication but I said no. I've had to live on a strict diet..no spicy or acidic food and keep alcohol to special occasions.have you tried D Mannose? What also helps me is homemade sauerkraut...try it. The sauerkraut is full of good bacteria and help the gut...and help with the pain.

      Report Reply
  • Posted

    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.

    Report Reply
    • Posted

      So with the things that you have mentioned did that stop the urgency feeling? I have been retraining my bladder for at least two months I try not to go to the bathroom which sucks. I hold it for a long time yeaturday even though I was drinking water I went to the bathroom only twice. I went in the morning And at 2:30 in the afternoon then I stayed up til 1:30 am and just fell asleep with the feeling woke up this morning and went. I just hope that with the ic diet I can get some relief.
      Report Reply
    • Posted

      I am so sorry you going through this Leah at such a young age and with all those beautiful children to take care of.  I have the same problem, the pressure part it feels like I have to pee but don't.  When I do urinate I don't get any relief after witch I miss.  I have only been dealing with this for 6 months, and have tried everything.   Has any doctor recommended DMSO intillations.  I have one coming up and cant wait even though its uncomfortable to have it done it may help.  Also like you I am on my third urologist hopefully this one if more helpful.  I am going to ask for botox injections maybe that will help with the bladder pressure.  I find all I do most of the day if try to relax on the couch.  Good luck to you and do try the IC diet and see if that help a bit.

      Report Reply
    • Posted

      Sorry Leah I did reply but don’t know if it sent or not! Basically please don’t leave it that long to pee - is that right you only ‘went’ twice yesterday? That’s not good - you could end up getting an infection if urine stays in you that long.  You should drink more water BUT you should aim to pee every 2-3 hours (except at night obviously) try to adjust your fluid intake so that you can hold on for that long.  Too much water and you’ll pee too often - your pee should be light straw coloured.  Not yellow or orange. 
      Report Reply
    • Posted

      Yes, I went from going 20-25 times per day to 8-9 times per day.  I still have some pain but can manage the urge better now.
      Report Reply

Join this discussion or start a new one?

New Discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.