I recently posted a petition about the Lower Urinary Tract Symptoms (LUTS) clinic at the Whittington. Many many thanks to all who signed. The total has now reached 2,500.
I’m posting here a link to our campaign website, www.bladderaction.org. For over 30 years, it’s been known by the authorities – and ignored - that cystitis (UTI) testing has been unreliable. Some 50% of tests show false negatives, ie saying there’s no infection when there is one. Because the tests don’t indicate infection, there is no need for diagnosis, thus there are no NICE treatment guidelines a physician can follow. (The British Infection Association stipulates that only a positive test result can lead to a diagnosis of UTI).
For countless thousands of women the consequences of this error can produce a wide range of symptoms, including the following:
- an extremely painful embedded chronic infection
- 24 hr frequency (needing to pee up to every 10 minutes)
- invasive medical procedures that can often make things worse
- a ‘catch-all’ diagnosis of Interstitial Cystitis/Painful Bladder Syndrome, often accompanied by ‘ ... and it’s incurable’.
It’s a total mess, and a disaster for those suffering. And no-one wants to know.
MP Catherine West has been spearheading a campaign in Parliament and doing a fantastic job for sufferers (estimated at up to 500,000 in the UK). Last October she led an adjournment debate on the issue, and continues to take the issue forward. Here’s what she said: ‘Too many people have told me that they have spent years reporting horrendous symptoms and suffering terrible pain, but that they have been dismissed and told that they do not have an infection because the culture was negative.’
We must break this horrible cycle of denial and long-term suffering.