Content note: this article contains references to suicidal ideation that readers might find distressing.

As told to Parisa Hashempour.

Imagine feeling like you’re peeing acid every time you go to the loo. That’s what living with a chronic UTI feels like. The pain is unreal: it’s like someone’s prodding a red-hot poker up there. At its worst, it left me bedbound. My world has shrunk; I’ve gone through periods of being unable to socialise, work or live the life of a normal thirty-something. And there’s nothing that NHS doctors have been able to do for me.

I was only five years old when I had my first UTI, although that wasn’t the diagnosis given at the time. The GP simply told my mum to get me to drink cranberry juice and lemon barley water and use Canesten cream. None of that worked, so I spent months going back and forth to the doctors in agony. I often couldn’t make it to school, let alone do PE. Later that year, my mum took me to the doctor with a raging fever, and this time, the (female) GP tested my urine and confirmed that it was a UTI. And that was when I was given my first course of antibiotics. 

Around 50-60% of women will experience a UTI in their lifetime. But no new treatment has been developed for UTIs since Alexander Fleming discovered penicillin almost a century ago, and now the bacteria are commonly outwitting the antibiotics we currently have. Unlike men, who are advised to take UTI antibiotics for a week, women in the UK are given a three-day course. Three days in my case simply wasn’t enough; my infections never fully cleared. Each time the bacteria returned, it came back stronger. Eventually, my condition became chronic.

When you have a UTI, you’ll feel a contraction-like pain across your lower abdomen, a heavy burning/stabbing pain, fever, nausea and sometimes delirium. It can lead to urosepsis (up to 30% of all urosepsis cases start in the urinary tract). Despite that risk, I was dismissed for years by medical professionals who suggested that I was wrong about my own condition. Dipsticks are often used to diagnose UTIs, but often, mine would come back negative. I now know that dipsticks can miss up to 60% of active infections, so they’re not an accurate diagnostic tool. 

At one point, my GP tried to put me on antidepressants to deal with the mental distress of living in chronic pain. I was starting to doubt my sanity.

The only treatments I was offered by the NHS were invasive and painful, including bladder stretches, cystoscopies and bladder instillations. After trying some of these and experiencing no respite, I concluded that no help was coming. I was just going to have to live with the pain.

I became a ghost of my former self. My relationship broke down, and everything that I took for granted and saw as part of my identity – travelling, socialising, exercising, dancing, intimacy, building a career – was cruelly ripped away.

Some days my pelvic congestion and inflammation were so pronounced it was hard to walk, and when I did manage to walk, it felt like I was prolapsing. I’d constantly leak – even at work. In the end, I had to let go of my career and leave the home I had built with my partner to move back in with my parents.

You lose all dignity with this condition. My parents have had to put me in the shower, prepare my meals, dispense my medication, sort out my finances. My dad had to take early retirement so he could be my carer, which isn’t a job any parent should have to undertake. They’ve seen me in states where I’m writhing in agony, and they’ve been powerless to do anything.

Things came to a head after a doctor at an NHS pain clinic appointment told me there was no cure, and that it was time for me to grieve for my old life and accept my new one with all its limitations. I knew then that I’d reached the threshold of what I could physically endure. None of the pain medications I’d been prescribed reduced my discomfort. I’d already experienced suicidal ideation in the past and it was at this point that I began to take steps to end my life. I didn’t want to die, but I knew I couldn’t endure that level of pain any longer.

Turning to social media in desperation, my parents found a Facebook support group for people suffering from chronic UTIs. This group saved my life. Through it, I heard other women’s stories of gaslighting and medical misogyny and I also learned about a specialist at a private Harley Street clinic founded by Professor James Malone-Lee. It wasn’t cheap, but my parents sacrificed their savings to get me there. For the first time in my life, a medical professional validated my experience of living with chronic UTI. 

After doing a freshly spun urine culture, the doctors came back into the room and said: “Katie, I’m so sorry that the NHS didn’t pick up on this, but you do have a raging chronic UTI, an embedded infection, and I promise that we will help and support you to overcome this.” It was the first time I’d been believed, and the first time anyone had explained to me what was going on in my body.

The Harley Street protocol involved long-term, high-dose antibiotics. And for the first time in years, I saw a tiny glimmer of hope. But after 15 months of treatment, I began rapidly losing weight, my hair started to fall out, and I was in constant abdominal pain. It turned out the long-term antibiotics had damaged my gut, and I’d developed severe gut dysbiosis. I had to stop the treatment, which was terrifying because I feared I wouldn’t be able to keep my infection at bay.

It was while composing an email to Dignitas – a Swiss-based organisation that helps with assisted suicide – that Ericka, a fellow sufferer and member of the online support group, contacted me. It was like divine intervention. After seeing my desperate messages to the group, she said she’d been thinking about me all morning and just had a feeling something wasn’t right. She needed to reach out to me. I broke down, explaining I couldn’t go on any more, that I’d exhausted every avenue. It was her strength, support and signposting that saved me. Ericka gave me the confidence to persevere with Harley Street’s new treatment regime, which involved high doses of the antibacterial medication Hiprex to replace the antibiotics. It wasn’t a cure, but it was enough to give me a reason to keep going.

I want people to understand that chronic UTI is not a trivial ‘woman’s issue’. It’s a debilitating, life-ruining condition that deserves attention, research and funding. My hope for the future is that there will be a cure. Treatments currently being developed show huge promise – scientists and engineers from Oxford University are developing nanocapsule technology, and Duke University is trying to develop a vaccine. I pray for the day when this nightmare is over. I just want my life back.

* Names have been changed

If you, or someone you know, is struggling with their mental health, you can find support and resources at mental health charity Rethink Mental Illness or access the NHS list of mental health helplines and organisations here.

If you are struggling with your mental health, you can also ask your GP for a referral to NHS Talking Therapies, or you can self-refer.

You can also call the Samaritans in the UK on 116 123 or email jo@samaritans.org for confidential support.

Images: Getty