Interstitial Cystitis

Were you checked for a bladder infection?

Hi l,m sorry your feeling so bad, maybe youve seen urologist and he,s helped reasure you, that there is help with treatments.  l had severe symptoms for many years. with misdiagnoses by gp, l cant go in to it all, would write a book, hell memories, including surgery. Finally after years of severe intense pain poor health and mental torment, lifestyle affect, a on my partner and kids, all it took was a l0minute scope by urologist for diagnoses. He prescribed cimetidine, he also diagnosed acid reflux, the cimetidine are histamine receptor, as with ic you produce too many mast cells that cause too much histamine causing inflammation, he also prescribed amimtriptylene, there a nerve end calmer to help with pain, also reduce output, and the frequent output of urine aggrevates the inflammation more, and they also help with sleep which is disturbed with frequency and pain.  He gave me info of support group, wee ray of hope, now taken over by c.o.b. which was a help to me, they send out monthly mag with latest research, didnt do any at all in uk, so get info from usa, germany, also different treatments, diets, alternatives, masses of stuff, trial and error what works and adapt to yourself. They also have letters from people with ic, l became pen pal to two, one an old lady who didnt have it too bad, the other in her 50s, she couldnt cope with affects and quality of life, and did go for urostomy, she,d to pay for private consultation and push for op on nhs, very resistant to doing it, the woman who founded group had also had one, but it is quite rarely done, as treatments can help quite a bit, or quite a lot, everyones different on what helps and quality of life they have. It usually takes cystascope for diagnoses, so maybe youll now be on list for one. lronically despite urologist telling me l,d acid reflux, l only had symptoms for 6months re heartburn, gall b pain, once gall b removed no symptoms for 20yrs that is, Just over a year ago l started with bouts of severe nausea, then a year ago, constant daily nausea for months, horrendous, couldnt eat, just moving about made it worse,lost 2 stone, that was the only posative being oweight, but what a terrible way to lose it,  finally another scope and gastritus diagnosed, put on omprazole, and it did reduce the nausea bloatedness,wind by 90 percent, along with smaller plain diet, still bubbles away, and little flare ups now and again, a worry, and def worse if l dont take the omp. l think with a lot of people they usually have more than one immune problem, allergies, skin probs, just our luck, but the ic can be improved, if not and your feeling that bad ask urologist about urostomy, l can tell your my friend who had it done, now years ago hasnt regretted it, cant say for others,and it is major, but personal choice against lifestyle quality, anyway hope youve had some posative news about treatments

Hi Lorraine,

I was diagnosed with IC as well. My symptoms were not so much the burning but a constant need to urinate, it never abated. I also had trouble emptying my bladder completely as I felt a loss of control and had bad pressure when urinating.

My urologist put me under and had a look inside but did not find anything. While he was there though, he performed a bladder dilation. Basically he pumped liquid into my bladder and stretched it.

The results were instantaneous. I immediately felt better and the need to urinate constantly went away. My control is better and I can live pretty much normally now. It's about 80% back to normal. I still feel that I need to go more regularly but it's not obtrusive.

He mentioned that I may need to return for another bladder dilation in the future, which I can live with.

After this episode it turned out that I developed a bowel condition too and I am now sure that the two are linked and relate back to an injury sustained to my nervous system when I was younger. I've had every test under the sun and results are all normal...

I wish you well, please mention this to your urologist, I am certain that it's worth a try.