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Patient stories

Men, women and children get UTIs. Sufferers of chronic UTI share their stories

Dan, works in web development, his UTI started out of the blue at university

“There was nothing unusual about the night that I began suffering with this illness. I was lying awake in bed reading a book, when the urge to pee hit me. Like most people who are engrossed in a book, I acknowledged the thought and made a mental note to go once I’d finished my chapter. There was nothing unusual or untoward about the sensation, so there was initially no cause for concern.

That is, until I was struck with one of the most resonant and ferocious pains I have ever felt. At this point, there was nothing anyone could have done to hold back the tide, and I rushed to the toilet where the misery continued for the entirety of the night.

The thought crossed my mind that I’d been hit by a UTI. This wasn’t the first time I’d been blighted by one, but it was the first time in adulthood, and from memory my childhood UTIs weren’t anywhere near as bad as this. What compounded the issue even further was that I am male, and at the time was an 18-year-old student who led an entirely normal (conservative for a student) lifestyle, so surely a UTI wasn’t the cause?

Soldiering on through the night brought some relief the following day: the pain had mostly subsided, but the constant, desperate urge to pee remained. I felt unable to continue my university studies, as concentrating on anything other than clenching every muscle in my abdomen to desperately hang on proved nigh-on impossible.

GPs tested for UTIs, sexually transmitted infections and diabetes and every test came back negative; as far as a GP was concerned, I was a healthy male. Even consultant urologists found nothing untoward, yet still subjected me to a barrage of invasive tests. The medication I was finally given did nothing, so the constant urge to pee remained with me for three years, along with intermittent, sharp pains, until I began treatment at the LUTS Clinic.

This treatment, as clichéd as it sounds, has given me my life back. Having to plan trips and paths around toilet locations is incredibly draining, especially for somebody deemed to be in the prime of life. I can sit on a train without having to worry about where the nearest toilet is. I don’t have to analyse the contents of drinks anymore to assess whether they’ll have an adverse effect on me. Flights are as comfortable as they can be, as I no longer panic in case I must use the loo when the seatbelt sign is on.

Whilst this is incredibly positive, I’m not out of the woods yet. Like most chronic UTI sufferers, even with regular medication I find myself unavoidably flaring at times. The team at the LUTS Clinic are always on hand to advise, and it’s less than a few days after their advice before I’m back to a relatively symptomless state. I can hold down work comfortably, and socialise over coffee; all relatively normal tasks, but when you suffer with urinary problems you desperately hide the issue out of embarrassment as even the simplest tasks that you once took for granted become painfully difficult.

Having suffered with chronic UTI I can firmly say that I would not wish it on my worst enemy. The mental and physical pain it causes is immeasurable, but there is hope. There is light at the end of the tunnel and you can get there, you just need to have faith and follow it. The hand you’ve been dealt is the worst hand you could have, but it doesn’t mean future hands will be worse – on the contrary, any future hands can only be better! I can firmly say, after having been through hell with chronic UTI, that the grass is far greener and lusher on the other side.”