The Station

Like many, many women, I have suffered for half a decade with what doctors casually referred to as ‘recurrent UTI’. Several times a year, I dragged myself to the surgery, bleeding and uncomfortable, with that ‘weeing broken glass’ feeling I knew so well. The routine was familiar; I would provide a urine sample (often extremely bloody and red on colour) and the doctor would prescribe me the same three-day course of antibiotics (Nitrofurantoin) and promise to send the urine sample to the lab. The next day, I would see on my NHS app that the urine had showed red and white blood cells, but the overnight culture had come back ‘normal’, meaning that no common UTI-causing bacteria had been found. I then got no follow-up, because the sample was marked as ‘normal’. Defeated, I would take the antibiotics, experience a bit of relief for a while, and the cycle would repeat.

Interspersed with this were semi-frequent hospital stays for nasty kidney infections. Last time this happened was the week before Christmas 2025. I was in for seven days and had every investigation imaginable – ultrasound, CT with contrast, CT without contrast, endless blood tests and urine cultures. There was evidence of acute infection – my CRP was raised to 89 – yet the symptoms simply weren’t resolving. I began to question the doctor about why this was happening, and by the end of my stay she was extremely cold and defensive whenever we communicated. I was never rude, just curious and at the end of my tether.

On one of the long nights I spent on the ward, I decided in desperation to do a Google deep-dive. I knew within myself that the explanation I was being given didn’t make sense and neither did the treatment – if my UTI was indeed chronic and resisting antibiotics, why was there no evidence of bacterial growth in my urine cultures? Why was there always this presence of white blood cells?

Very quickly, I found that several serious conditions could cause this situation, two in particular being genitourinary Tuberculosis, or TB, and Lyme Disease. I had lived for a short while in the forests of Germany; Lyme Disease didn’t seem beyond the realms of possibility. And TB? Well, I was desperate enough to try anything.

When I was released on Monday 22nd December, I got in my car, started the engine and rang the number I had found online for the TB clinic in my town. The nurse I spoke to was surprised at what I was describing – it was an unusual presentation – but she was thankfully willing to help me rule it out.

Pulmonary Tuberculosis, or TB of the lungs, is the most recognised presentation of the disease. What is less commonly known, however, is that this hardy bacteria can actually infiltrate any organ in the body. TB of the urinary tract (kidneys and bladder) is actually a well-recognised phenomenon.

My quantiferon blood test came back negative very quickly. On account of this, I very nearly didn’t even provide the lab with my urine samples, taken first thing in the morning for three days in a row. But out of a sense of obligation for finishing the process, I delivered them to my GP surgery and forgot all about it.

At the end of January, on an unsuspecting Tuesday afternoon, my phone rang with a number I didn’t recognise. I was sat in my car drinking orange juice at the time, about to pick up my son from nursery. It was the TB nurse I had contacted all those weeks ago, and she told me straight off the bat that she was ‘gobsmacked’ to inform me that my urine sample had actually come back positive for Tuberculosis.

I was absolutely thrown off balance with shock. I’ve spent so many years being told ‘all your tests came back normal‘ and being sent on my way that I honestly didn’t know how to react! I was quickly booked in for an appointment with the TB consultant and my new TB nurse reassured me that she would be there to support me through the (rather aggressive) 6-month treatment protocol.

There are several reasons why a TB blood test would come back negative and the urine sample positive – recent antibiotic use and weakened immune response to the chronic TB infection being two of them – but the presence of the AFB (TB) bug in the urine was, of course, treated very seriously in my case. We are still waiting on the official culture of said AFB, which will tell us the strain and the drug sensitivity, but I have already started the front-line treatment of four extremely strong antibiotics a day, combined with a high dose of Vitamin B6 to offset nerve damage caused by the antibiotics. I will also be closely monitored for liver damage, which is also a potential outcome of this long treatment regimen.

I’m on Day 3. Side effects aren’t too bad so far – fleeting nausea, reduced appetite, fatigue, rash – but it’s preferable to ultimately being consumed by this deadly disease.

I can’t help thinking, now that I’ve solved my own case, that ‘chronic UTI’ is often code for ‘you’re female, so as your doctor I expect you to suffer your pelvic pain quietly. I haven’t got a neat answer to this, and when I hear hooves I look for horses, not zebras.’ If a man walked into that surgery with a history of a recurrent, extremely painful, bleeding infection that affected a viral organ several times a year, there’s no way he would be dismissed the same way women are. There was even a report published last year on the UK government website describing ‘the burden of UTIs’ on the NHS. This is, categorically, along with menstrual problems and generalised anxiety, seen as a ‘women’s issue’ that we have the audacity to burden the NHS with. Maybe we wouldn’t HAVE to ‘burden’ the NHS that most of us pay for with our taxes if we were provided with adequate treatment and follow-up investigations.

I am growing more and more convinced that ‘chronic UTI’ is a catch-all diagnosis for some who experience urinary symptoms that can’t be treated with a simple three-day course of antibiotics. The ‘it’s just IBS’ of urology, if you will. I tend to decide whether I’m been treated fairly by institutions by considering whether a man in my position would be treated the same way; in this case, he absolutely would not.

Luckily for me, I am persistent to a fault and very well-acquainted with Google deep dives. My bladder is already structurally damaged, a classic Tuberculosis finding that was never reported to me after it was discovered during a scan in February 2025. I was labelled as a ‘frequent flyer’ by my local A+E, but didn’t let that deter me, as it would lots of people, from repeatedly bothering them to actually treat me properly. Bloody urine is not normal. Pain and urgency is not normal. A thickened bladder wall is not normal. And, no matter the cause, chronic UTI is not and should not be considered normal. Add into the mix the fact that most people my age or younger were not vaccinated in school against TB with the BCG vaccine, and that there’s documented evidence that the Covid vaccine can trigger latent TB, and I think we might have a conspiracy on our hands.

Women are expected to silently deal with chronic pain in a way that men are not. We are disproportionately affected by autoimmune conditions that often take years to diagnose. Maternity care in the UK is a shambles and under widespread review. And recurrent UTIs are, again, considered the remit of women, which means that most men simply do not understand the agony associated with a bladder or kidney infection. This is your sign, if they’ve told you that your infection is ‘chronic’, ‘recurrent’ or ‘embedded’, to insist upon further tests and investigations. That is the bare minimum that a man would receive in your position, and, as in my case, it might save your bladder. And your life.