Does anyone suffer from chronic cystitis or ... - Vasculitis UK
Does anyone suffer from chronic cystitis or other urinary tract problems. We are asking this question on behalf of one of our Vuk members
I don't, but for a long time my vascular consultant thought I did, and had me bring urine samples to be tested. He thought I had chronic cystitis, possibly an interstitial bladder wall infection. Eventually I was referred to a urologist, who did urodynamics tests and others, and confirmed that I have an overactive / neurogenic bladder due to the brain damage from my cerebral vasculitis. My bladder incontinence is extremely bad urge and frequency issues, and I have to wear incontinence pads permanently, and have done since my early 20s. Anti-spasmodic drugs (Detrusitol / Tolterodine) help. But it's a permanent problem, and my incontinence was rather off the urologist's scale in severity.
I do, i have WG , I keep having water infections,one minute theres blood ,protein etc in my urine,2 days later nothing.I always feel as if I need to go, but on the flip side, when i do, its not worth it. It drives me mad
I have WG and often suffer from water infection/kidney infections - with blood and protein showing in my urine and a raised white blood cell count but nothing is ever grown in cultures. Its tends to be sporadic and i would liken it to a flare up as it usually lasts 3 days or so andthe i will be fine!
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not infections, but when i gotta go, i gotta go urgently,its worse when i get up after sitting a while, also very variable, some nights i sleep through and other nights i have to go up to 5 times
Hi i have WG and i am prone to water infections very often and often both that of protein and blood is present. I have antibiotics and still have to seek other medication when really bad. It is problematic, stops me going out and very painful. I must add that i do drink lots of cold fluids (i don't drink hot drinks) so i am not sure what the answer is. Hope this helps
I suffer from recurrent kidney infections the last one leaving me hospitalized on Christmas day !!! I take Trimethoprim 200mgs every night for preventative measures and Dr Jayne has told me to take Ciprofloxacin on the first signs of infection. My Gp has kindly issued me with these antibiotics and I have purchased the labstix to test my own urine for any sign of infection ( ie protein, blood, nitrates, leucocytes ) I also take daily cranberry capsules to try to avoid future infections.
I have WG, but I suffered with UTI infections for years before diagnosis. They were so frequent I didn't even need an appointment to see a GP, after a quick phone call they'd issue me a prescription to collect at their surgery reception! Sometimes they were so bad I'd have to go into A&E to get urgent help. Other times they'd display themselves in such a way I didn't realise I had one until a doctor confirmed it but generally speaking I got pretty good at self diagnosis. I had tests galore to see why it was happening, everything came back that there was nothing wrong. The odd part is, since starting treatment for Vasculitis I haven't had a thing wrong with my bladder or urinary tract. I've had all the vasculitis kidney involvement, maybe all my UTI problems went there instead! I have no idea why they've stopped, but it's certainly a relief not to get them.
I have skin vasculitis and, yes, since having this for some reason I have had UTI's. It isnt anything I suffered from before this and I often have protein showing in my urine whenever I have it tested in whatever hospital dept I am in at the time having one part or another of me tested 
I know when its going to get really bad and I pop off to the GP at the very beginning of symptoms to get some Trimethoprim, I have at least 5 days worth instead of the usual 3 and then it calms down a bit. I have also noticed that eating sugar brings it on too.
Have WG and suffer from recurrent UTI`s approximately every 6 to 8 weeks. Tried all the usual tricks like cranberry juice, plenty of fluids etc, but always end up with antibiotics in the end. Nitrofurantoin seems to works, but last few times needed 7 days course as the usual 5 day course failed to cure. Sometimes GP gets a little blood but usually dip stick tests all clear. Sometimes lab tests show culture, but often have all the symptoms of stinging, urge, smell etc without a positive test. From experience, do not leave it to long before getting some treatment as it can get worse quite quickly.
Thank you everyone for your replies to this question. It is interesting that in most cases there does not seem to be a UT infection as the cause. I think if anyone has had cyclophos and is experiencing this sort of problem they should have a check that there is nothing undesirable taking place inside the bladder. It would also be helpful to know how many of the 9 people who have answered have been treated with cyclo at some stage.
Me never. My bladder problems are 100% due to the brain damage from my cerebral vasculitis, not as a result of any treatment. They started before I was diagnosed, let alone treated.
Yes I have been treated with the cyclo, but not had any UTI's since. Weird. Asked my consultant about this today oddly enough, she suggested that it would normally be the other way round, ie, the vasculitis could actually cause these problems instead of them disappearing! I must be some kind of odd ball!
Hi, Ive never had cyclo
I have hph and I get constant urinary infections and seem to have blood permanently in my urine but noone appears too concerend , take anitibiotics and it usally clears up
