When John Isaacs catches a train these days, he settles comfortably back into his seat to enjoy the journey.
This may sound unremarkable, but it’s something John was completely unable to do until just over a month ago – because he constantly worried he wouldn’t make it to the loo in time, due to his chronic cystitis.
‘It was so bad at times that I lived in constant fear of wetting myself,’ recalls John, 56, a DJ from Bournemouth, Dorset.
‘Even if I did make it to the loo, the pain I suffered when urinating was often eye-watering.’
Cystitis is essentially an inflammation of the bladder. It often occurs when bacteria find their way into the tube that carries urine out of the body (the urethra) and travel to the bladder, causing infection and irritation.
It’s often thought of as a women’s disease – one in two will get it at some point in their lives, according to the NHS – yet men get it, too. It’s estimated that as many as one in seven men will have cystitis in their lifetime.
Symptoms include a burning, stinging sensation when peeing; needing to go more frequently; urine that is dark, cloudy or smelly; and pain in the lower stomach.
The most common cause is a bacterial infection – often caused when E.coli from the bowel travel into the urethra.
John Isaacs constantly worried he wouldn’t make it to the loo in time, due to his chronic cystitis
Bacteria are naturally present in and around the anus and the perineum (the sensitive tissue between the scrotum and anus in men, and between the vagina and anus in women) – but can sometimes penetrate the tissue and travel up the urethra to the bladder.
The reason it’s more common in women is down to anatomy, explains Anthony Noah, a consultant urological surgeon at University College Hospital in London.
‘The female urethra is much shorter than the male urethra – around 3-4cm compared with 20cm – and is therefore much closer to the anus, which harbours bacteria,’ he told the Mail.
‘Meanwhile, the male urethra is longer and most of it is in the penis – so it sits further away from the anus.’
Women’s causes include changes in hormones.
For both sexes, triggers include holding urine in for too long, which allows bacteria to multiply (stagnant urine can contain bacteria), and blockages that can cause poor emptying.
Kidney stones can obstruct the urine flow higher in the urinary tract, leading to urinary retention.
Meanwhile, bladder stones can form directly in the bladder and irritate its lining or block the urethra outflow.
‘Over time, this irritation can lead to ongoing inflammation and repeated infections,’ says Jeremy Ockrim, a consultant urological surgeon at London Urology Specialists private clinic.
Other causes of cystitis not related to infections include certain medications, such as diuretics, antibiotics and chemotherapy drugs; radiotherapy treatment for cancer; as well as recreational drugs such as ketamine – all of which can irritate the bladder, says Mr Noah.
He adds: ‘Ketamine abuse causes problems in the urinary tract, particularly the bladder. Ketamine abusers end up with scarred, shrunken and very painful bladders.’
Confusing the picture is that chronic prostatitis (inflammation of the prostate gland) can mimic cystitis symptoms, including painful urination in men, says Mr Ockrim.
Triggers include holding urine in for too long, which allows bacteria to multiply (stagnant urine can contain bacteria), and blockages that can cause poor emptying
But the fact that cystitis is less common in men can often lead to missed or delayed diagnosis – GPs see it less often, so many are not looking out for it, he explains.
‘A recent study in France emphasised that GPs have limited experience with male cystitis, leading to delays in diagnosis and inconsistent treatment – these challenges are the same in the UK,’ says Mr Ockrim.
In John’s case, it took seven years before he finally got the treatment he needed.
His problems began in 2019 when he started getting ‘pain and stinging when weeing’, he recalls.
He was confident that this was not due to a sexually transmitted disease – which can cause similar symptoms – as he was in a monogamous relationship at the time, but his GP tested for this: the results were negative.
Urine tests for infections also came back negative – ‘the GP seemed to think all was well and that was that’, John recalls.
But it got worse over the coming days.
‘It really stung when I went to the loo and sometimes it would be a very urgent feeling to go,’ he recalls.
‘Sometimes I would feel I wasn’t emptying my bladder fully and would have to go back to the loo minutes later.’
This carried on for weeks – with John continually visiting his GP, who also tested his prostate to check it was not enlarged. This is a common condition in men over 40 and can put pressure on the bladder, causing increased urination.
These tests also came back clear – so John ‘decided to live with it’, as he puts it.
Eventually the problem cleared up on its own.
Months passed and although John had some flare-ups that would last for days at a time, he could often manage these by drinking plenty of water – and his symptoms would go away again.
But by 2024 it was getting worse: ‘It got so bad that on car journeys if I needed the loo I’d have to stop the car and literally pass urine at the side of the road, in stinging agony,’ he recalls.
On one occasion, during a night out, he had to go to the loo twice in a very short space of time while out at a club. ‘I was accused of taking drugs in the bathroom cubicle – but all I was doing was trying to wee!’ he says.
The fact that cystitis is less common in men can often lead to missed or delayed diagnosis – GPs see it less often, so many are not looking out for it, explains Jeremy Ockrim
Cystitis is typically diagnosed through a combination of symptoms and urine tests, checking the urine for white blood cells, red blood cells, bacteria and nitrites that signal infection.
Why John’s urine test came back negative was, he says, never explained to him.
But John’s GP did not regard his symptoms as warranting more investigation – telling him that as there were no signs of infection he could go home.
And without a diagnosis and treatment, his symptoms worsened.
On occasions he would even wet himself because the nerves in his bladder were so irritated he lost control.
John says: ‘And the pain got worse, such stinging and agony. Only a tiny bit of wee would come out. It was hell.’
Finally, last year he begged his GP to be referred to a specialist.
John was tested for bladder cancer, but then the urologist explained that he had cystitis – and had had it for so long that his urethra had become ‘clogged’ with calcium deposits, infections and old urine.
As a result, little urine was able to escape, so was causing further infections.
‘This was the first time anyone had ever mentioned cystitis,’ says John. ‘I thought it was a women’s thing myself.’
In fact, the consultant explained that John had a shorter urethra than normal for men – and this was potentially the cause of his recurrent infections and cystitis.
This in turn had led to urethral stricture – where scar tissue causes narrowing of the urethra – and then a vicious circle of incomplete bladder emptying and subsequent urinary tract infections and cystitis.
‘All I cared about was that someone was finally listening to me,’ says John.
His surgeon recommended urethral dilation (known as urethrotomy), where a small camera is passed through the urethra to locate the scar tissue, after which the surgeon either stretches the narrowing using dilators, or makes a precise cut to restore a wider channel for urine to flow.
A temporary catheter may be placed afterwards to keep the urethra open while it heals.
For some men, a single procedure is enough. But scar tissue can recur, and further options exist.
These include self-dilation, where men are taught to pass a catheter themselves at regular intervals.
In a newer technique, a chemotherapy drug called paclitaxel is delivered to the area via a long thin ‘balloon’ that also helps widen the stricture, to inhibit new scar tissue formation – in urethroplasty, a more complex surgical repair, the narrowed segment is removed and rebuilt, sometimes using a small graft of tissue taken from the inside of the cheek.
Urethroplasty carries higher long-term success rates and is often recommended for recurrent or severe cases.
‘While these procedures aren’t common, they’re highly effective,’ says Mr Ockrim.
‘For men who have spent years struggling with urinary infections or the inability to empty their bladder properly, correcting a stricture can be life-changing.’
John had his urethral dilation in February and opted for a general anaesthetic.
He says: ‘I was scared and it sounded awful, but I knew I couldn’t live this way anymore.’ He had the operation as a day case and when he came round, he was able to urinate fully and without pain for the first time in seven years.
‘I am telling my story so other men do not suffer as I did,’ says John. ‘Cystitis is not just a women’s issue – and GPs need to be more aware it can happen to men, too.’
Mr Noah agrees: ‘Anyone who does not feel they are being listened to – please seek a second opinion if you are concerned.’
