Chronic UTI/rUTI/IC/PBS patient, depending on who you ask . . .
The loo, mostly
Joined December 2018
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"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."
Immunomodulation therapy offers new molecular strategies to treat UTI | Nature Reviews Urology nature.com/articles/s41585-0…
Bladder Confusion retweeted
'Intensive farming behind antibiotic-resistant MRSA, say researchers' #StopSuperbugs #AMRSOS newfoodmagazine.com/news/166…
Bladder Confusion retweeted
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
Guidelines are letting down patients with chronic UTI. Thanks to the inews for highlighting this debilitating, life-changing condition. inews.co.uk/inews-lifestyle/…
💯 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"
Bladder Confusion retweeted
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
Bladder Confusion retweeted
Panel poll #2. @ChronicUTIAus @ConfusedBladder @BladderHealthUK @cuticuk @liveUTIfree Providers can help UTI patients best by:
24%Provide reasons for UTI
65%Provide treatements
12%Listening to concerns
0%Not other health problem
17 votes • Final results Bladder Confusion retweeted
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.
Spending the evening presenting some of our @AMR_Research
@uDRIP_Group work at #LGBTQSTEMUCL My first, but hopefully not last conference specifically highlighting the work of LGBTQ+ colleagues in STEM
Bladder Confusion retweeted
@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 🤬
STOP SACRIFICING UTI PATIENTS OVER AMR FEARS
@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?
mirror.co.uk/lifestyle/healt…
Bladder Confusion retweeted
#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? theguardian.com/lifeandstyle…
Bladder Confusion retweeted
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. journals.lww.com/fpmrs/Abstr… – at Pittsburgh, PA
Bladder Confusion retweeted
Chronic UTI sufferer Sarah Heaton tells @theipaper she was driven to contact Dignitas after feeling she had no other way out of the pain. This condition makes people suicidal and those with the power to improve treatment must do more. (by @connie_dimsdale) inews.co.uk/news/health/chro…
Bladder Confusion retweeted
petition.parliament.uk/petit…
Lets get the link for the petition promoted here and perhaps in the article itself?
Bladder Confusion retweeted
‘I’ve battled crippling UTIs for three decades, it’s time politicians took this seriously’ / MPs, sufferers and campaigners say better treatment for chronic UTIs is long-overdue, reports @connie_dimsdale for @theipaper inews.co.uk/news/health/chro…
Often followed by 'are you anxious/stressed/depressed'. Even if you are, probably because of the impact of your physical symptoms, you don't want to tell them, because from then onwards everything physical will be blamed on mental health and ignored.
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Bladder Confusion retweeted
Here is the link to the full report of the @ALTAR_Trial - all 206 pages. It contains a lot more detail than our BMJ paper so for those who are interested - happy reading!
journalslibrary.nihr.ac.uk/h…
