Katharine’s Story: Recurrent UTIs and antibiotic resistance

Katharine’s Story: Recurrent UTIs and antibiotic resistance

Katharine, is 66 years old and has recently retired from nursing.

Life after menopause: the beginning

My journey with UTIs began shortly after menopause. A doctor later told me that if I’d started appropriate treatment for menopause early on, I might not have had to live with UTIs. It’s difficult to hear and I’ll never know if that’s true.

My UTIs started in 2018 when I was working 12-hour shifts as a Nurse, often unable to drink enough water during the day. I would go to the GP, get prescribed an antibiotic and it would help temporarily. Eventually, my doctor suggested I take a low dose antibiotic prophylactically. I stayed on it for over a year, and it seemed to help. That was until I tried to come off the antibiotic. The infection came back with a vengeance and when I returned to see my doctor he was very unhappy that I had stopped taking it.

Antibiotics weren’t working for me

In 2019, I went back on the same antibiotic and became very unwell. After many tests, they concluded I had antibiotic-induced hepatitis and was hospitalised. While recovering, I developed polymyalgia rheumatica, a condition that causes pain, stiffness and inflammation in the muscles around the shoulders, neck and hips, and I had to take steroids for three years.

The UTIs kept coming back. A few years ago, a urologist found E. coli trapped between two linings of my bladder which explains the recurrent UTIs I’m living with. I have become resistant to most oral antibiotics and allergic to others. One penicillin-based antibiotic caused a severe reaction and I needed emergency care. I then also became allergic to penicillin.

Now, there’s only one single-dose antibiotic I can tolerate.

Diet and lifestyle changes that have helped me

In 2023 I was due to have spinal surgery and because losing weight could help with that procedure, I started a strict sugar-free diet before the operation. I realised during this time that I was also having far fewer UTIs.

The operation was successful and I recovered well from the spinal surgery. However, I wasn’t able to cook for myself and so I reintroduced sugar to my diet. I noticed quickly that I began getting UTIs more frequently.

Last Christmas (2024), I had a terrible UTI and ended up in hospital again. They gave me an IV antibiotic and then the home treatment team came to my house to continue the course. Because of how bad this UTI was, I decided that from 1 January 2025 I would again try a sugar free diet. I still have some fruit but I have completely cut out things with added sugar and have reduced the amount of bread I eat.

In the nine months since I cut out sugar, I have had three UTIs, which is a huge improvement and far less than I was experiencing before. I’m sure that the most recent UTI I had was triggered by a particularly sweet nectarine.

I have also now started drinking lemon water twice a day and making sure I stay hydrated, especially when I’m out and about. If I don’t, I know I’ll be likely to get a UTI.

I’ve had tests on my bladder and kidneys and physically everything looks fine. I do have a small bladder, which means I’m always thinking about where the next toilet is. It’s exhausting because I know I have to keep well hydrated to prevent UTIs but that this means I am constantly needing the toilet.

Trying new treatments for UTIs: Clinical trial for UTI laser treatment

I’m not sure whether the improvement in my UTIs is purely down to my dietary changes or whether it’s down to my participation in a clinical trial. Earlier this year, I joined a clinical trial testing laser treatment for UTIs. The laser is meant to disrupt the vaginal biome. I don’t know yet if I received the real treatment or a placebo, but I’ll find out later this year.

I’ve previously tried bladder instillation treatments, but they were hard to manage at home and didn’t help me much.

Living with recurrent infections: Getting the right care

Now, when I get a UTI I take a sample in. I’ve found that my initial test always shows signs of infection, so they send it off but sometimes they give me an antibiotic that doesn’t work.

The doctors know me well now and I’m lucky that they listen to me and provide support. However, I know that’s not always the case. I’ve spoken to younger women who struggle with UTIs and who don’t feel listened to by their healthcare professionals and despite recurrent UTIs, continue to be treated with short course antibiotics that don’t clear the infection.

The physical and emotional toll

Back in 2017–2018, the infections were very bad. I was probably getting one a month. The symptoms aren’t typical UTI symptoms for me. I feel tender and, when I pass urine, I get a wave of pain through my body. It’s awful until I drink enough to start peeing properly again. That usually takes a couple of days. I often find taking antibiotics makes me feel generally unwell with nausea.

One of my biggest fears now is getting a chest infection. I have asthma and so if I need antibiotics they could wipe out my good bacteria and trigger a UTI. I can never fully relax.

Both my daughters live abroad, and I worry about getting sick when I visit them. I’ve had to queue at foreign clinics for treatment before but now I can’t take most of those medicines. I haven’t been abroad in over a year. The last time I did, I drank a lot of water and was constantly searching for a toilet.

My partner’s life is affected too. He worries about me and has to think about everything I’m dealing with. My eldest daughter even arranged treatment from a private clinic to help with my UTIs but unfortunately they didn’t work.

Looking to the future

I’m hopeful that something will help my UTIs and I will no longer have to live in fear of recurrent infections. Whether it’s the laser treatment, the diet, or a combination of both. I’m hoping that one day I can live life without the worry of UTIs.