Interstitial Cystitis

[Elsbeth]

Hey, does anyone here have this condition and if so how do they help you control it?

Cheers for your help in advance.

[kimsuzw]

Hi, there my name is Kim and I have been suffering with this condition for 3 years now, I was told by my urologist that I had the worst case he had ever seen. Firstly, it was controlled by antibiotics, then I had to have 6 weekly treatments called Cystistat Therapy and Rimso 50 whereby, your bladder is emptied then they put a catheter into you and inject this cystistat fluid into you and then take the catheter out and you have that done for 6 weeks. If that doesn't work then you can try the more painful one Rimso 50 which is the same procedure except they want you to pass urine after as it hurts/burns. Also 6 weeks after this you should have a colonoscopy to check the bladder. Unfortunately for me these treatments didn't work and I now control the pain I feel at times by drinking plenty of fluids and the best for this is cranberry juice or the capsules. Hope this helps you

[PPSN_JudyB Pelvic Pain Support Netwo]

Shouldn't cranberry juice should be avoided in those with IC as it irritates the bladder ?

[kimsuzw in reply to PPSN_JudyB]

Cranberry juice is absolutely fine as it acts as an alkaline not and acid as with some other juices. Two glasses a day is fine or you could take the cranberry capsules one a day.

[PPSN_JudyB Pelvic Pain Support Netwo in reply to kimsuzw]

Everyone is individual, however the following link has useful information about IC and diet. Cranberry juice is usually problematic for those with IC. It says "Drink a lot of cranberry juice and your urine will reliably turn acid, and if you're an IC patient, your IC will flare up"

ic-network.com/handbook/die...

[laurakd12]

I've recently been diagnoised with ic after over a year of suffering, and i've been lucky after suffering for a while i got referred to a doctor who knew about the condition and perscribed me amitriptyline and this has really helped me. But i find i still have to watch my diet as well as taking the tablets, most fruit juices are a definate no, especially cranberry, but in small doses i can have fruit juices with meals. I also find tomato's aren't great like pasta sauces but it varies between brands. I now manage to control the symptoms fairly well and i am now finally starting to be able to get out the house. Hope this helps

[hackneymum]

Hi there

New to this site but I wanted to flag that there are some treatments and measures that seem to have worked for me.

I developed urinary frequency in Jan 2011; this was 2 years after the birth of my second child which itself resulted in various bowel prolapse problems (nightmare - and still is!).

A few months after the frequency kicked in, it started to get painful too and from time to time I felt I wasn't emptying completely; at the same time, I started to experience mild but worrying given my bowel prolapse problems internal rectal pain.

My urogynaecologist did a cystoscopy with biopsy which showed very slightly above normal mast cells which were "consistent with IC" but as the symptoms were also congruent with the possibility of pudendal nerve problems, I've seen a specialist nerve pain. He felt that I probably didn't have traditional IC as such - that the increased mast cells in my bladder may be a response to nerve irritation.

Sorry, that's all very complicated, but I particularly wanted to post that since then, I've had a course of Cystitat through my urogynaecologist and my symptoms are much improved.

I've also been doing some lifestyle measures to minimise pudendal nerve problems (minimising sitting for long periods etc) and of course I've cut out caffeine, reduced acid intake etc. While I can't say for sure that it was the Cystistat alone that produced the change, from the timing, it certainly contributed.

one of the things my urogynae told me which I found reassuring, and which has certainly turned out to be true in my case, is that IC, overactive bladder etc can fluctuate a lot. I still have fairly lengthy periods - weeks at a time - when my bladder is almost totally normal; these are interspersed with shorter periods when it's more aggravated and troublesome.

The same, incidentally, is true of my pudendal nerve pain - it's much less noticeable now than it was a 9-12months ago. I'm sure that minimising unnecessary sitting is helping.

THis adds to my belief that the whole nerve damage, pelvic organ prolapse, pelvic pain/IC thing is very much interconnected.

Hope this is of some help and love to hear anyone else's experience/tips on improving bladder problems of this kind

Needless to say, as soon as I got an IC diagnosis I cut out all caffeine and I am careful to avoid too much acidic food - citrus, tomatoes

[Sierra718]

I have interstitial cystitis. I've been suffering since 2011. I wasn't diagnosed until 2013. I was first misdiagnosed with chronic UTI's (even though no bacteria was ever present in the cultures) and prescribed unnecessary daily antibiotics and cranberry supplements. All that did was destroy my gut and make my life a living hell. It caused my pain level to skyrocket and I felt so helpless with nobody listening that there was no infection. Something else had to be wrong. I found myself a Urogynecology near me and she was a life saver. She knew right off that it was IC, and did the test and sure enough. I got off the antibiotics, started my gut healing with probiotics, aloe Vera gel capsule to help with pain, I don't go near cranberries at all (not mad since I hate the taste), and physical therapy helped a lot. Dietary changes are hard but a necessity. Kim, It doesn't sound like that is what you have to me. First off, antibiotics don't treat IC. It isn't a bacterial infection; it is an inflammatory disease. Second, cranberries are most certainly problematic for IC patients. You sound like you have a cystitis, but it doesn't sound like IC. It sounds like terrible chronic UTI's. I don't know the name of it, but I know there is another type of cystitis that is basically chronic infections. Are you sure that you aren't confusing the names?

[SallyB8]

Hi , I was diagnosed on Friday the 13th Nov 2015. He done a cystocopy (sp) the specialist has prescribed me heparin twice weekly and amitriptyline which I was already taking. I have my first course today. I have to instill it into my bladder. It is suppose to help heal the layer of bladder lining missing. I'm anxiously awaiting the nurse visit to show me exactly how to put a catheda (sp) in . this will be my forst time doing this =(.