Why so many are suffering terrible pelvic pain and burning when they go to the loo. It’s often misdiagnosed as a UTI… now doctors tell why antibiotics make it WORSE – and what you must do instead

A competitive cyclist for almost 25 years, Riyadh Khamis thought nothing of ramping up his training to prepare for races.

But within weeks of gearing up his cycling in March this year, he noticed strange sensations in his pelvic area.

‘I was having tingling and pain around my testicles – it felt like a strong electric shock,’ recalls Riyadh, 49, a car technician who lives with his wife Maria, 47, a health coach, and their two teenagers in west London.

‘The pain was worse at night, making it difficult to get to sleep. But I just thought spending too much time on my bike saddle had caused an injury.’

He saw his GP, who suspected a urinary tract infection (UTI) and prescribed antibiotics. But these didn’t help – that’s because Riyadh wasn’t suffering from a UTI, but from chronic pelvic pain syndrome (CPPS), a condition that affects increasing numbers of men, particularly in younger age groups. (In fact, antibiotics made his condition significantly worse; more on that later.)

CPPS is pain or discomfort in the pelvic area – the bladder, bowel, penis, prostate, perineum (the area between the vulva or scrotum and the anus) and lower abdominal area – lasting at least three months and that doesn’t have an obvious cause (e.g. UTIs).

Symptoms include burning sensations, increased frequency or urgency in urination, sexual dysfunction, pain when passing a stool and constipation.

The problem affects men and women (where it’s often associated with conditions such as endometriosis). Nine per cent of men report CPPS symptoms every year; in women, it’s closer to 20 per cent. But it’s thought awareness of the condition in men – among patients and some doctors – is so low that many go undiagnosed or are misdiagnosed.

This can be ‘due to embarrassment, stigma around discussing symptoms in the pelvic region, and societal expectations that discourage men from seeking help for intimate health problems’, explains Ashwin Sridhar, a consultant urologist and urological surgeon at University College Hospital, London.

‘The condition can profoundly affect daily life including relationships and intimacy,’ he adds. ‘But also, the persistent pain, urinary and bowel symptoms – and fatigue – can disrupt concentration and attendance at work; while shame and perceived lack of support may cause depression, anxiety and social withdrawal.’

Most commonly in men, the trigger is prostatitis, inflammation in the prostate or bladder. This inflammation may be initially caused by an infection, but in CPPS the inflammation persists long after the infection has cleared, and is coupled with muscle tension or spasm and nerve dysfunction (which worsens pain signals).

While CPPS in the over-50s is usually caused by bladder or prostate problems, there has been a rise in cases among younger men. ‘I see more young men in their 30s with CPPS now compared with five or ten years ago,’ says Mr Sridhar.

This is thought to be due to a combination of stress (anxiety causes pelvic muscles to tighten and tense) and the popularity of high-intensity exercise regimens, cycling and weight-lifting, which can lead to overuse of pelvic floor muscles, he explains.

In some people, stress causes a clenched jaw or shoulder muscles to tighten, but many people don’t realise that the muscles in the pelvic floor can also be affected, says Karl Monahan, a sports therapist and founder of The Pelvic Pain Clinic in London, who eventually treated Riyadh.

‘Stress makes the muscles overactive because we clench and hold on to the muscles instead of relaxing them. Over time that constant clenching can cause nerve irritation and sensitivity in the area, which can cause inflammation and pain.’

The problem is compounded by the fact that even when men seek help, diagnosis is often not straightforward. That’s partly due to a lack of specialist urologists, says Mr Sridhar, ‘with some areas experiencing long waiting times and limited specialist resources’.

And when they are seen, men are often told they have a UTI, as symptoms such as stinging or burning when urinating can overlap, adds Mr Sridhar. He explains that urine should always be tested for bacteria before antibiotics are prescribed. If there are no bacteria – and other causes of pain, such as cancer are ruled out – the diagnosis may be CPPS.

Instead, antibiotics may be given too prematurely, without the right tests being done. This can have disastrous consequences, as Riyadh discovered.

After his initial GP appointment and when antibiotics proved ineffective, Riyadh sought help privately. ‘It was burning when I was urinating and sex was too painful,’ he says.

‘I’d gone from cycling four times a week to not at all. I could only work half days because I couldn’t be on my feet for so long. I felt helpless and feared something was very wrong, but no one understood what was happening.’

A private urologist diagnosed CPPS caused by bacterial prostatitis, despite not testing any urine samples for bacteria.

Riyadh was prescribed the powerful fluoroquinolone antibiotic, ciprofloxacin. But within days he was experiencing a severe burning sensation, which spread to his entire body, and suicidal thoughts – both known side-effects of fluoroquinolones.

The Medicines and Healthcare products Regulatory Agency states that antibiotics, including ciprofloxacin, should be stopped immediately if these side-effects occur, and should only be given for prostatitis caused by bacteria.

However, the urologist advised Riyadh to continue taking the antibiotics, even prescribing a second course. ‘For eight weeks I couldn’t leave the house or go to work. I’d become a shell of myself,’ he says. ‘I’d been planning how to end my life and written suicide notes to my wife and children.’

Things turned a corner in June, when he contacted Karl Monahan. He was advised to do pelvic floor exercises twice daily – lifting and squeezing the pelvic floor muscles as if stopping yourself from passing wind – as well as deep breathing and yoga, to relax the body and destress.

Riyadh forced himself to walk a little daily, ‘going from not being able to walk to the end of the road to walking 3km a day’, while simply having someone who didn’t think his symptoms were ‘in his head’ also helped.

Karl Monahan explains: ‘We introduce exercises that relax the pelvic floor to get some movement into it, such as breathing from the diaphragm, gentle pelvic floor stretches and perineal massage to relax the muscles in that area.’

In terms of treating CPPS, in many cases men are encouraged to be more active. They may also be advised to modify exercises that may overwork their pelvic muscles – for example, swapping cycling and heavy lifting for swimming, light cardio, yoga and tai chi, adds Gerard Greene, a pelvic health physiotherapist based in London and Birmingham.

New research could pave the way for better treatments.

A recent focus is the microbiome, the community of microbes in our body shown to have a key role in health and wellbeing. A review of studies in Frontiers in Microbiology in March found microbiome changes are associated with raised incidence of CPPS. One theory is these might weaken the intestinal lining, allowing disease-causing microbes to leak into other parts of the body, including the pelvic area.

Scientists at Anhui Medical University in China concluded future research could show treatments such as probiotics and FMT (when a stool sample from a healthy donor is given to the patient via a colonoscopy) to restore a healthy microbiome might be more effective and have fewer side-effects than existing medications. (As well as antibiotics to treat suspected UTIs, these can include certain antidepressants thought to have pain-relieving effects.)

Four months since stopping his antibiotics, Riyadh is still coping with the damage. Nerve-function tests have shown damage in his feet, lower legs, left arm and face.

‘I’ve gone from being an athlete to being partially disabled,’ he says. ‘Physically I cannot be on my feet for more than two hours at a time and I’m taking amitriptyline [for nerve pain]. I still have burning in my feet, fingers, back, mouth and pelvic area.

‘But I have recently worked up to being able to ride my bike for an hour, to get back to some sort of normality. I still wonder if I’ll be like this all my life – but life feels more manageable.’

For free, confidential support, call Samaritans on 116 123; visit samaritans.org