Hi
@nessa1970
I was diagnosed with interstitial cystitis (IC) in November 2013. It was mid 2013 when I initially thought I just had a UTI (as have had a few of those since being diabetic) so went to my GP to get the test done. The urinalysis test result came back with high leucocytes but no bacteria or fungus found. My GP then did another 5 urinalysis tests over the next couple of months (which all came back with the same result of high leucocytes) and even got me to take antibiotics "just in case" before he said that he had to refer me to a urologist as the test results and my symptoms persisting were unacceptable. Now he has plenty of tests results from me in the past with no pathogens in urine.... I never had high leucocytes without bacteria basically. He said high leucocytes is indicative of inflammation.
My symptoms definitely weren't going away either. I had stabbing pain, aching, burning, frequency (I average 17 trips to the toilet per day on a good day), urgency, retention, incontinence. I was reacting to food and drinks as I would get very intense symptoms an hour or so after eating or drinking the wrong thing. I've had the urine tests to rule out tuberculosis, CT scans, 2 cystoscopies, 2 urodynamics tests, 1 hydro-distention with cystoscopy done under general anaesthesia since being referred to my first urologist. I've seen 3 urologists so far. The first diagnosed me with IC along with telling me my bladder and uretha were uncoordinated. The 2nd urologist told me my bladder wall looked fine and I had 900ml bladder capacity which was good... but he concluded I have a variant of IC and I don't have IC. The 3rd urologist did a pelvic exam on me and told me I had hypertonic muscles, the most severe she's ever seen and recommended physiotherapy. She also told me I have IC, I have a variant of IC, and I don't have IC in the same sentence.... aka: she doesn't know I think. For treatment I'm currently watching my diet and sticking to food and drink I can tolerate that aren't acidic (using the IC food list... mind you some of the safe foods I can't eat like apples and watermelon... it's trial and error) and I was put on amitriptyline for it.
I'm also waiting to hear from a professor here who is doing IC research here and is waiting for funding for Stage 2 of his research... I'm a bit excited about that as he is the guy that discovered what causes stomach ulcers. He's going to write to me to let me know when Stage 2 will go ahead. To date I have not had a symptom free day since it started in mid 2013.
I'm a member of a few support groups for it and they've been amazing at helping me through things. What I do find is that US seems to be better at diagnosis and treatment of IC than anywhere else in the world. I've certainly had a rough time here and currently have no urologist at the moment. It's definitely a chronic condition and can cause quite intense pain at times. I've even had to go to ER to get my bladder emptied. It's possible I may have to learn to self catheterise myself in the future. But these groups have helped me realise I'm not alone and all the ladies and gents in the groups are going through a lot of the same things I do. Some of them have just a couple of symptoms, others have the lot. Some have severe stage of the disease and others don't.
I hope your appointment goes well and if you do get diagnosed with it.... at least know you're not alone. Whatever you do, don't give up. IC is diagnosed based on exclusion so they will rule out everything else first.
Have you seen the IC food list as yet? I use that as a guide... it helps. But then we're all different as some people aren't diet sensitive at all, whereas others can barely eat much without a reaction. Also a lot of people with IC, including myself find that activity triggers the symptoms to flare as well. I can't seem to do shopping anymore without having to sit on an ice pack when I get home as I'm burning real bad and in bad pain... when that happens I can hardly get anything to come out either which just makes it worse. The more urine you retain the worse the symptoms get I find. When I was at ER last with it I had pain back and front up to my rib cage. They tried to tell me it was just colic at first.... I said no no it's my bladder as I can't go. The ER doc thought that was odd but turns out I was right as when they finally emptied my bladder the pain level dropped significantly. They were amazed... they've not dealt with an IC patient before though I don't think. I don't know anyone where I live with the disease. My only contacts are all online. Feel free to PM me with any questions or if you want to find a support group as I'm in a few of those.
