Rachel’s story: Coping with recurrent UTIs

Rachel is a 24-year-old woman living in Essex. She’s an administrative worker and counselling student.

My first UTI

I first experienced a urinary tract infection (UTI) in 2022 when I was 21 years old. Since that first infection, UTIs have unfortunately become a constant part of my life. I have suffered with flare ups every month multiple times. I’ve been in and out of my GP’s office over the past three years, prescribed lots of antibiotics, but nothing seemed to have helped long-term.

Recurring UTIs, diagnosis and treatments

After having UTIs for around a year, I was referred to a urologist and had a scan of my bladder, which showed no abnormalities. Under NHS care, I was treated with bladder installations of hyaluronic acid. These installations were weekly at first, then moved to fortnightly finally to monthly. I continued to have these regular bladder instillations for two years and it was working very well but when I came off them to see whether my bladder had healed/improved, unfortunately, the symptoms flared again worse than ever, and I experienced more recurring UTIs. Since then, I have now also been referred for pelvic floor physiotherapy.

Further tests revealed my bladder wasn’t emptying properly, which was likely contributing to the recurrent infections. I’ve had flow rate tests and repeat bladder scans trying to get to the cause. Over this journey I have learnt that pain management is important, and I was prescribed medication to ease bladder discomfort. It’s a strange kind of pain which can vary, it can be easy to dismiss if you’re not careful, but it is very real and disruptive. I have had to make significant lifestyle changes, including adjusting my diet, cutting back on trigger foods/drinks, taking probiotics, taking certain vitamins and supplements and prioritising exercise such as yoga to help manage these symptoms. These combined have helped, especially in preventing flare-ups. Going through this experience has made me want to understand my body better. I have started researching and learning more about my own health and especially how gut health can play such a huge role in overall wellbeing.

Despite all the tests, there’s still uncertainty. Is it painful bladder syndrome (PBS), interstitial cystitis, or an embedded UTI? Without knowing for sure, it’s difficult and I’m managing as best I can.

Impact on my life

Living with recurrent UTIs has really affected my daily life. I often feel anxious about making plans because I worry, I’ll get a UTI and must cancel. Even the thought of it can trigger symptoms and I become very hyper aware of every feeling. I’ve learned to be cautious and if there’s a big event that I really want to attend I’m careful to take all the preventative measures I can in the fortnight leading up to it including staying hydrated and avoiding alcohol.

I find the pain is usually worst at night and I’ll get the UTI symptoms during a flare-up between 11pm and 4am, but it often eases during the day, allowing me to work. In fact, going to work often helps distract me from the pain as it can be so easy to just want to stay near a toilet when experiencing a UTI. I’ve been on so many antibiotics that I now really try to avoid them unless there’s blood in my urine and I know antibiotics are the only option to clear it.

When I do have a UTI, getting an appointment with my GP can be a struggle. I rarely see the same doctor and often have to re-explain everything. Sometimes GPs can be dismissive or suggest the really basic hygiene tips like wiping properly, which can be extremely frustrating/upsetting after three years of managing this condition. I often find they will try to prescribe me with a short 3-day antibiotic course, which I know won’t help with my recurrent infections. I’ve really had to learn to advocate for myself over this whole journey and really make sure I do am taking my health into my own hands e.g. researching.

Support and emotional impact

My pelvic floor physiotherapy revealed I have an overactive pelvic floor, likely caused by repeated infections. I’m finding the physiotherapy helpful, though difficult to do as my pelvic floor is always tense. I am working with my physio to improve this, but it really can be physically and emotionally draining. I have found their work so interesting as it really highlights basic things that we don’t think about that can affect our pelvic floor, even breathing correctly can have a massive impact!

I’ve been lucky to have a compassionate nurse who administers bladder installations. She used to be a medical researcher and goes above and beyond for me, sharing resources and support.

Despite the support, it’s easy to feel low. This condition has an impact on my life and relationships. It can be quite hard to explain to a partner what living with this feels like and the impact it has in a relationship. I am so fortunate to have such a great support system around me!

I’ve spent my early twenties dealing with recurrent UTIs. It’s isolating, but I’ve found some comfort from hearing the experiences of other women experiencing UTIs online, where people share their experiences and treatments. It has restored some faith in humanity, especially in the kind nurses and professionals who truly care.

Looking ahead

I’m considering intermittent self-catheterisation (ISC) in the future to help with bladder emptying and hopefully help avoid recurring UTIs. For now, I’m managing the condition with lifestyle changes, physiotherapy, and bladder instillations. It’s not easy, but I’m learning to live with it.