Katherine’s story: Living with Recurrent UTIs

Katherine’s story: Living with Recurrent UTIs

Katherine is a 54-year-old Digital Health Consultant who lives with recurrent UTIs.

UTIs in my 20s

I started getting UTIs in my late twenties and early thirties. I found myself in a cycle of getting cystitis again and again. I tried to manage it myself with cranberry supplements and sodium citrate sachets (I always had them with me). For a while, this worked for me but over time the infections got worse. I would try to manage them as I’d done before but within about three days I’d be in horrendous pain, weeing blood and needing antibiotics. This became a regular cycle: I would get a UTI, it would become a kidney infection, I’d be prescribed antibiotics and due to the antibiotics I would then go on to get thrush. It could take three weeks to recover, and it happened a few times a year.

The link between intimacy and infection

There was a clear link between sex and the onset of cystitis for me. In my twenties, I was more sexually active and, after a weekend of great sex, I’d brace myself for the inevitable infection. When I got married in my early thirties, the infections stopped for a while as we weren’t having the type of sex that seems lead to infections for me. I was married for twenty years and cystitis wasn’t a problem during that time.

But after we separated, I started having more regular, passionate sex again and the cystitis came back like never before. It wasn’t just the physical symptoms for me; it was the emotional toll. I started avoiding sex, even though I wanted to stay sexually active. I felt like I had to choose between intimacy and pain.

Menopause and its impact: What I wish I’d known

I went through surgical menopause a few years ago and I now know now that lubrication changes after surgical menopause, and that can make things worse. I was on HRT, but no one had ever mentioned vaginal oestrogen to me. That’s something I’ve only just learned, and it’s made a huge difference.

Not being listened to

When the infections returned recently, I tried the Pharmacy First scheme. I was excited because speed is everything when it comes to UTIs. I was prescribed an antibiotic quickly and the symptoms eased but, ten days later, the infection was back. I went through the same process again, was prescribed the same antibiotic and again it came back.

I called NHS 111, desperate for help, but they kept saying a clinician would call me back. It was frustrating. I didn’t need a phone call; I needed antibiotics. The pain escalated quickly. Within hours, I had stabbing pain and it felt like I was weeing acid. I ended up at an urgent treatment centre in Brighton, where I was kept waiting for hours.

When I was finally seen, the Nurse confirmed an infection but then proceeded to ask me about the number of sexual partners I’ve had and implied that the infection was self-inflicted. I was outraged. That kind of judgment is exactly why so many women suffer in silence.

Finding the right treatment: advocating for myself

Eventually, I went back to my GP and asked for a proper test. I brought a midstream urine collection device but was told the lab might not accept it. I didn’t want to risk another delay, so I didn’t use it. Two days later, I got a call saying there was no evidence of infection even though I was still in agony.

I insisted on a second culture using a midstream sample. That test identified the infection properly and I was finally prescribed the correct antibiotics. If it flares up again, I’m going straight to my GP or A&E and demanding a culture before any treatment.

It’s been over two weeks since my last infection cleared. I’m still having sex, which is important to me, but I have concerns that it will return. Once these infections take hold, especially in postmenopausal women, they can be hard to shake.

After I shared my story on LinkedIn, I was inundated with messages from women going through the same thing. Many people told me I needed to ask for Methenamine Hippurate, vaginal oestrogen, and to insist on a culture every time. That advice has been invaluable. I’ve spoken to my healthcare professional, been assessed and prescribed the treatment I need thanks to the advice I received.

My hope for the future

I know I’m lucky. I’m educated, articulate and confident enough to push back. But what about the women who aren’t? Who don’t know what to ask for or how to advocate for themselves? There are millions of women like me and if I’ve managed to nip this in the bud by being informed and not taking ‘no’ for an answer, then I want others to be able to do the same.

We need better pathways for women who don’t respond to first-line treatments. If an antibiotic doesn’t work the first time, we need immediate testing and targeted antibiotics. It’s not rocket science. It would save the NHS money and spare women the trauma I went through.