Bladder Confusion

Chronic UTI/rUTI/IC/PBS patient, depending on who you ask . . .

[Bladder Confusion @ConfusedBladder]

"the immune system has a dual role as protector and cause of disease: in addition to being protective, increasing evidence shows that innate immune responses can become excessive and cause acute symptoms and tissue pathology during infection."

[Malcolm Starkey 🏴󠁧󠁢󠁷󠁬󠁳󠁿🇦🇺🥋🥼 @malcolm_starkey]

Immunomodulation therapy offers new molecular strategies to treat UTI | Nature Reviews Urology https://t.co/BBiYsfxZhq

[Bladder Confusion @ConfusedBladder]

@janecurrie @PrenatalTherapy @UCL_IfWH @JamesMaloneLee3 @catpeejay Congratulations!

[Bladder Confusion @ConfusedBladder]

@GlobalUti That would be great 😊

[Bladder Confusion @ConfusedBladder]

@GlobalUti @ChronicUTIAus @BladderHealthUK @cuticuk @liveUTIfree @LRH33 @JoanneMckinlay4

[Bladder Confusion @ConfusedBladder]

@GlobalUti @ChronicUTIAus @BladderHealthUK @cuticuk @liveUTIfree a source they might actually listen too, too often patients get written off as 'hysterical' or having spent too much time on Google. 2/2

[Bladder Confusion @ConfusedBladder]

@GlobalUti @ChronicUTIAus @BladderHealthUK @cuticuk @liveUTIfree Honestly, the more clinicians and professional accounts that can clearly and concisely explain the limitations of current UTI testing and the complexity of UTI/chronic UTI the better. It gives patients the information to try to take to their doctor, and clinicians/researchers 1/2

[Stop Superbugs @TheUrgentNeed]

'Intensive farming behind antibiotic-resistant MRSA, say researchers' #StopSuperbugs #AMRSOS https://t.co/aPdsxXY0uL

[Bladder Confusion @ConfusedBladder]

@chrisharding123 I hope you feel on a more even keel soon, chronic illness can just be so relentless. 😊

[Prof Jennifer L. Rohn @JennyRohn]

Listen to women and their experiences and symptoms. Too many UTI sufferers are fobbed off after “failing” ancient diagnostic tests that the scientific literature has long since shown are flawed. We need more empathy, more research funding —> better tests and treatments

[Bladder Confusion @ConfusedBladder]

💯 In my experience:

- UTI fails to respond to culture indicated abx -> "it was probably just a contaminated sample"
- UTI responds to non-culture indicated abx -> "it was just residual inflammation that resolved"
- UTI responds to culture indicated abx -> "of course it did"

[Chris Harding @chrisharding123]

@thebladdergroup An alternative explanation may be that the prevalent bacteria isolated from cultures may not be the species causing symptoms - something the late James Malone-Lee suggested decades ago. Although I suggest an additional explanation for their findings I 💯 agree with the conclusion

[Chris Harding @chrisharding123]

@thebladdergroup An alternative explanation may be that the prevalent bacteria isolated from cultures may not be the species causing symptoms - something the late James Malone-Lee suggested decades ago. Although I suggest an additional explanation for their findings I 💯 agree with the conclusion

[UTI Global Alliance @GlobalUti]

Panel poll #2. @ChronicUTIAus @ConfusedBladder @BladderHealthUK @cuticuk @liveUTIfree Providers can help UTI patients best by:

[Beyond Antibiotics: Research Programme @AMR_Research]

Impressive results from @GarethLuTheryn using ultrasound and bubbles to disrupt biofilms and bacteria. We cannot wait to see more of his research and talk about implications for practice.

[Sarah @Sarah_ann28]

@BladderHealthUK My local MP took the issue of CUTI directly to the Health Secretary and asked what they would do in regards to this debilitating illness…the response she received “nothing”…I’m incredulous 🤬

[Leah @LRH33]

@DrNighatArif Great to see Hiprex on there….just to flag latest guidance to patients on infections that keep coming back - could in fact be chronic UTI i.e not a new UTI but same one embedded in bladder lining. See guidance below

[Bladder Confusion @ConfusedBladder]

STOP SACRIFICING UTI PATIENTS OVER AMR FEARS

[Leah @LRH33]

@NHSEngland can you describe what ‘mild cystitis’ is? How is this measured? Who defines if it is mild, the GP or the patient? The idea that cystitis can be mild is a nonsense, if a quarter of UTIs can end up recurrent or even chronic, why take this risk?

https://t.co/IZ2NQ2a9V0

[Leah @LRH33]

#ChronicUTI community please fill this in & share widely - they are explicitly asking for our experience of NHS UTI treatment….

Tell us: what is your experience of women’s healthcare in England? https://t.co/fJwrCerHqO

[Jocelyn J. Fitzgerald MD @jjfitzgeraldMD]

I have long suspected that Hipprex does more then just prevent UTIs—now we have some data to show that it is anti-inflammatory and may help heal the bladder barrier, as well. https://t.co/qAN7CkAqXB