Can someone Tell me abit more about interstitial cystitis?


I recently wrote a page on frequent urination and how it affects me I can hold my toilet for around 3-5 hours so have no problem but the symptoms of the urge to pee comes and goes making it hard to hold it when im always thinking of the urge to go I was tested for diabetes and that was negative now am having ultrasound on bladders and kidneys although i have done research and found a possible link with my symptoms

They come and go

They are affected by certain foods or drink and menstruation

Will have an urge to go

These are basically my symptoms and How I'm affected I believe it comes and goes which it does but comes when I have to much drink or cola and also comes when Im menstruating. It started of 3 weeks ago with the urge to keep going by the way and has since come and gone and is back again

Any advice about this condition is much appreciated and about my symptoms also



9 Replies

  • Hi Metoyou, I replied to your last post and ended up with the same advice as you,(see someone). I don't have your problem but do share some issues. I have not seen anyone but did order urine dipsticks and am testing my urine twice daily. I will show my 'log' to rheumy and other Drs, as there are a lot of positive results on a daily basis. All I know about interstertial cystitis, is that it is an inflammatory condition. Lupus patients can suffer with this, but it is basically a long term cystitis that doesn't respond to antibiotics.

  • Hello 6161

    You know what it has become a problem so badly that I have seen someone twice first got tested for diabetes then the next they decided upon an ultrasound its so bad that its all I can think about and is even made me so depressed that im on tablets. Urine samples always come up negative for any infection they basically see no issue in the urine for me, diabetes is a no so its an ultrasound left for the bladder and the kidney which I no kidneys isn't no problem so its just the bladder. Thanks for your advice appreciate it

  • Hi

    You say you have done some research so you may already have got this. There is info on patient uk. It's for professionals but other than a couple of terms that need checking it was straight forward. I don't know a thing about it but had a quick look and lists SLE in its causes.

    I see you have been referred for tests. So thats good.

    3-5 hours isnt too bad for holding urine. Cola is full of caffeine so that will irritate the bladder and it depends how much is going in as to how quick it comes out. Try keeping an eye on that. I don't mean measure it. The docs will ask if they want you to do that.

    The docs will ask for urine specimens if they feel it is necessary. They are best done in the morning and should be done in the sample bottles you get from the Gp. Anything else would not be accepted for possible contamination reasons.

    Keep drinking plenty. If there is an infection you want to keep the urine diluted but stick to water. If you start to feel hot and cold and generally unwell you need a same day appointment to check you don't have a urinary tract infection.

    Sorry but that's all I know.

  • Hi

    Just to clarify google and then choose patient uk.

    Patient uk has patient info and professional info. I hope this makes scence x

  • Hi Metoyou

    Interstitial Cystitis is basically the immune system attacking the bladder and there is drug treatment that works(I'm on one called Oxybutyin). Don't be alarmed if you get blood in your wee as that can be a symptom. The tests your having will be able to diagnose it if they find inflammation in your bladder like they did for me. There are also training exercises you can do to ease frequency of urination but you need to see what your tests reveal first. Hope I've helped and best of luck.x

  • I have had a problem with my bladder since December I took a sample in to the nurse she tested it sent it away and gave me antibiotics as if I haven't had enough the test came back clear no infection but I still had the same problem. This time I saw the nurse she tested my urine white cells were present this shows a sign of infection more antibiotics I'm still the same I just phoned my GP's the test came back today but no one has looked at them yet so will ring tomorrow.

  • Hiya my daughter has had probs with her water works for most of her life it was suggested she drink 250mils of cranberry juice a day things have improoved greatly she still has afew bouts but ther is an improvement hope this helps x

  • Daily cranberry supplement has worked wonders for me and my sister. No irritations, or UTIs ....cranberry keeps bacteria off walls. Like it better than the drink. Drink is bitter....

  • Cranberry Juice and Cranberry supplements work wonders, as does adding fresh lemon juice to your water - (No sugar) - Helps to rebalance the whole urinary tract & bladder - as Natura says. Also, keep off the coffee and tea (Caffein irritations) and certainly keep off the Cola - So much sugar - Way too much in fact!

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