Interstitial Cystitis

[kalms1971]

Hi does anyone suffer with this? I have had bouts of it for a couple of years and just want some relief from the symptoms. I burn all the time (urethra) and need to wee a lot. Doctor hasn't offered any medication, although I have heard of some people getting help from pain with mild antidepressants

My SIL has this, every 2 years she has an operation to stretch her bladder, she has a TENs machine for pain and takes medication, some of them pain killing ones containing codine (she can't visit certain countries as they consider it a controlled substance) but I don't know if any are the anti-depressant one. Sorry.

I am sure she is also under the care of a urologist. Maybe you should try a different GP at your surgery to get a better response.

My SIL has given up the hope to have children as she can't be without the medication now and can't take them whilst pregnant

Have you heard of the COB support group?
www.cob.org.uk

you might need to double check that website but it's easily findable via google.

There is no 'cure' for everyone as everyone responds differently. You might get some relief with amitryp. in low doses, and definitely a change of diet.

Have a look at their website- easier than writing it all down here for you!

sorry this is the website

www.cobfoundation.org

Thankyou :)

Yes, I have it. I'm generally okay if I avoid drinking certain things (tea, filter coffee, alcohol and fruit juice). You have to experiment and try to identify what's triggering it.

HI, could you be eating foods that contain potassium/high potassium? One bite of banana gives me a complete flare up - so now that I know this, I avoid it at all costs.

I have tried different medications in the height of my many flare ups but realised that certain foods were actually triggering me - but this is very hard to figure out when you are in a long period of flare up.
Please don't let urology give you a bladder wash with any potassium solution as this is more than likely to cause extensive flare up and pain. This takes a long time to settle and for the bladder to 'shed' the skin inside. I find at times of very minor flare up that taking one antacid is enough to take the desperation/burning/pressure feeling away. I am certain this can be controlled by diet and if you keep a food diary and try to see the correlation this can be massive in diagnosing yourself. I discovered my problem after I embarked on a juice diet a number of years ago......Good luck x

Hey there, popping on as I suffered with this too - came on out of the blue about three years ago. I ended up seeing a dr of chinese medicine who practises in LA(!) - sort of can't believe I did it, but I was completely desperate, and it was totally worth it. Her view is that it's caused by imbalance in the gut, which in turn is generally caused by overuse of antobiotics, the pill, ibuprofen-type painkillers, a sugary diet and so forth. If that sounds like you, maybe take a look at her site? She has great success in treating people but it's not an easy road - it involves a massive lifestyle change, and it's taken me 2.5 years to get slowly better. I have no bladder or urethra symptoms at all anymore, just some external aching/burning on and off, which she tells me will pass, too. Good luck - I know how absolutely horrid it is.

www.icama.org/