'In pain all the time': will there ever be a cure for chronic, life-changing UTIs?

H

hinterland

Senior Member (Voting Rights)
https://www.theguardian.com/society...ief-for-women-with-chronic-life-changing-utis

Like many others, she searched for help online because GPs and urologists diagnose conditions that seem to be labels for an unfixable problem – painful bladder syndrome or interstitial cystitis. There is no offer of a cure. Many of these women – and it is usually women although not solely – converse in Facebook support groups and talk of a clinic at the Whittington hospital in north London and a consultant – Prof James Malone-Lee, who has pioneered a different approach.
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Some very senior clinicians support Malone-Lee’s work. Mark Slack, head of gynaecology at Addenbrooke’s hospital in Cambridge, regularly sees patients debilitated by chronic UTIs, describing the condition as a “major problem”. “In 20 years we haven’t advanced one inch from where we were,” he says.

He is critical of those who dismiss patients’ problems as being primarily psychological – instead saying having a UTI for long enough can impact a person’s psychological well being. He says he has had patients who have been completely well, then get what seems to be a UTI and become virtually disabled.
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Good article IC is yet another condition that comes under MUS isn’t it. I don’t get painful UTIs nowadays but I’ve had spells in the past of recurring UTIs and at some point it became pointless going to GP any more as the urine test always came back no infection but felt just the same as the earlier episodes when I’d been given antibiotics. So just painkillers drink water, cranberry juice and get on with it as far as possible. That was in the years when I considered myself healthy before recurrent laryngitis/flu that appears to signal the start unbeknownst to me and GPs of gradual onset of ME.

From perspective of anti MUS advocacy seems like ME people/organisations have common cause with folks with IC if there are any organisations & groups to possibly work with on it.
 
Interesting!

I hardly get uti’s anymore, but when my ME started I had about 20 uti’s in one year. Luckily, the tests came back possitive mostly and when they didn’t, I got antibiotics anyway and it always helped right away.

They once wanted to fob me off as well with a “test is negative, it’s just an overactive bladder now”, but the symptoms were exactly the same as any other acute uti (horrible!) so I didn’t accept that nonsense. Antibiotics worked fine that time, like any other time.
 
My friend had cerebral palsy which never held her back despite looking very disabled, yet interstitial cystitis floored her. Now they have discovered that urine contains lots of bacteria which do not grow on agar plates so all those "no growth found" results that meant IC wasn't real were just a flaw with the TEST!
 
My year of reoccurring uti’s > to one infection which was resistant to the antibiotics > Sepsis > withdrawal of i/v a/b > increased infection (only a 4 day culture test showed the continuing infection) > back onto i/v a/b > ‘recovery’ but exhausted.

Eventually after no improvements = M.E.diagnosis.
 
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