chronic bladder wall infection//cystica cysitis

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has anyone been in my situation

i have had horrific lower back pain and bladder pain for 6months now with blood and pus in urine on dipstick but never any positive uti

- i has a cystocopy under gen anesthetic and surgeon said i have chronic bladder wall infecion (ecoli was found from biopsy) and they have also named it cystica cystitis but definatly havnt got Interstitial cystitis ... since diagnosis 7wks ago iv been on nitrofurotaine, co-amoxiclav and currently on cefalexin and have been for past 3 weeks----none of these have helped -still suffering so bad(i have cut out all caffeine too)

taking tramadol for pain in back

what am i to suggest ,when antibiotics are not working -has anyone had any other treatments or is there any thng else that can help apart from antibiotics ?

i could scream -just want to be on mend


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  • Posted

    I have been investigating the forums for UTIS for a long time now  & it is clear there is no patient orientated research with damage & grief  emanating from poor guidance given to GPs unable to research  .

     I have  had research in 1969 & spina bifida occulta [ in 10 % of population] was connected .Since have had a neurogenic bladder found & double ureters . The urethrotomy resolved the pain problem but noone addressing fact you can reinfect yourself via sex as well .Bacterial vaginosis could also alternate.

    As sepsis  could be a real problem I can't understand the mentality that ignores this .

    I have met A&Es refusing to test because directed by non medical -  .

    For last 30 yrs I have had my medication rotated & kidneys kept clear by Prof rotating antibiotics having proved extended cultures did not show as original microscope not strong enough.This Prof   said spinal problem pain spasticity not his remit yet resolved via uti medication   .

    Now moved house and  left again to the dangerous ,negligent procedures of primary sector .

    No wonder GPs no longer take the hippocratic oath.

    Was told last week many middle aged women have it sitting there causing no problem so didn't have to give antibiotics or refer for PCN or sacral stimulator .Help??!! Keep persisting .Try d - mannose .Ihad facet joint injections after paying a fortune for MRI  which have helped symptons not root cause.

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    • Posted

      hi thanks for replying---iv been back to uroligy today and told them no comfort iv had from past 7 wks off antibiotics--her reply .......well we have treat infection maybe something else is going on..........urine showed blood in today andhas been sent off for culture too.......i have another appointment next wk as she was a registrar and said best see consultant ,,

      i have double urether too which joins to 1 urether which leads to badder--they have said this will cause no pain iam getting


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    • Posted

      Be sure to get some good women's health probiotics which should help your body get back into balance after all those weeks of antibiotics. Hopefully you're feeling better now. 
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  • Posted

    Hi again,

    Why is it the incoming patients with complicated history get given to least experienced  Dr who then omits the most crucial evidence such as the disability spina bifida [ occulta] in 10% of population ," causing no problem" from the Charity with another agenda .Could it be they too are on Remits ? The sufferers, if diagnosed know, different .Surely if a uti can lead to sepsis ie: pyuria , why aren't A&Es testing,  and, with this new vaccine have the adults to die or suffer amputation?

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  • Posted

    Hi again.

    Saw a Private specialist last week re benefits & suitability of a sacral stimulator ?Because of my cardiac arrest he suggested not but may help you.He   thought that chemical installation may help NB The COBF  website .It forms a lining of bladder wall but you have to have it via catheter .There is an unlicensed vaccine  too that is sprayed under the tongue but  it can be expensive with a consultation if it doesn't work.

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    • Posted

      hi julie are u in uk?    i am....  

      no one has discussed sacral stimulator with me but the first option my uroligist wanted to trywas a bladder stretch (distension) i had this under gen anesthetic last wk--up to now not feeling any relief at all---i was speaking to surgeon who sees bladders like ours all the time and he said bladder installations with cystistat next option and see someone at pain clinic.

      i currently take tramadol for pain around my lower back but it doesnt take edge off bladder pains-- surely there must be medication purely for badder pain,no one has offered me -so now i cant wait to see someone at pain clinic.  take care 

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