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Feeling unwell from Cystitis

Posted , 2 users are following.

Caz91
Caz91

I have had bladder complications from birth and self catherterize through a mitrofanoff. I have always suffered from re occuring water and kidney infections due to refluxing and not being able to always empty my bladder fully; i have recently had my kidney removed as this was badly scared with a stone and not really working, we thought this would improve my symptons but since the symptons have been getting worse but everytime i'm tested there is no specific bug growing?

I feel generally unwell; shivery and tired as well as burning and stabbing... can this be symptoms of Cystitis? I'm beginning to wonder if that's what i'm suffering from. I have had many courses of antibiotics and it just comes straight back !!!

Can anyone help?

0 likes, 4 replies

4 Replies

  • lynne69494
    lynne69494 Caz91

    Posted

    Hi Caz, Your symptoms definetly sound like bladder infection, and if no bacteria shown in sample it sounds like it could be intersticial cystitus, where courses of anti biotics wont cure it.  Only def way is cystascope, means a baloon put in bladder blown up when under anascetic, salt water put in to see if bladder bleeds, more typical of ic, and abnormal bladder wall, but they often take biopsy at same time.  There are meds and procedures that can help. Again, as with all it seems, youve to pester gps to refer you to urologist for scope. After what youve already been through, a cystascope will be easier, hope you get help.
    • Caz91
      Caz91 lynne69494

      Posted

      Hello Lynne,

      Thanks very much for that! Guess what i actually had a cystoscopy last Thursday - they said my bladder was full of debris which would have been causing the pain... It is a relief to know what the cause is! I have however had burning pain still but maybe just because they didn't manage to clean it all out.

      I've got a follow up appointment in a few weeks.

      Do you know what meds and procedures are used?

      Just that i'm going away tomorrow and anything that could help I'll take along with me!

    • lynne69494
      lynne69494 Caz91

      Posted

      Hi Caz, Glad youve got it over and done with, did they say what the debris was?. Odd, quite a while before l had a cystoscopy, l had a touch of nephritus  and xray showed my bladder wasnt emptying properly, the gp gave me a course of pessaries to be used every night for a week or so, and one large anti biotic tablet, might have even been once a week, 

      Well, lve never seen anything like to affects of them, the pessaries stung like mad, gp said they,d iodine in them, after a few days l,d masses of debris came away, like crystalised yellow stuff, bit like sugar grains, after a couple of days it was followed by masses of thrush, l was staggered at what came out, but it did help with symptoms, best l,d felt in years, could suddenly run and jump again, felt great, sadly it didnt last long, within a couple of weeks back to normal, not sure if spontaneous or through intercourse, we didnt have it regular anyway due to ic, but back to sq l

      l was never told exact state of bladder only it had inflamation hemaroges. Surely the debris has got to be infection, but the urologist denied it was `hunners ulcer`, but inflammation untreated is more likely to become infected, thrush goes along with infection.  No wonder the pain was or is for some horrendous, if youve infection on top.  Maybe theyve cleared debris but inflammation still present, l guess you,ll find out more at next appt.  For me and many typical meds are amitrip, cimetidine, amitrip a nerve end calmer and reduces output or urine, also helps with sleep, too high a dose, which isnt needed, small dose l0ml does enough. Cimetidine histamine receptor due to ic bladders producing too many mast cells releasing too much histamine causing inflammation, helps some more than others, varying meds used, others might advice, but l guess your getting ready for away, When you see urologist can you ask him what the debris is and what its caused by, interested.  Have a good time on hols.

    • Caz91
      Caz91 lynne69494

      Posted

      Thanks Lynne!

      That advice is so helpful... and you know it could still be inflamation, my bladder has been ulcerated before so it could be that again.

      I will let you know the outcome of my appointment when i get back.

      Trust you are keeping well!

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