Linda’s Chronic UTI Story

Linda had bladder issues for as long as she can remember.  Even as a child she was aware she needed the bathroom more than most.  It was inconvenient and sometimes embarrassing, but she developed strategies to manage social events without drawing too much attention to her toilet trips.  It was after menopause that her bladder symptoms escalated and her strategies and short-course antibiotics stopped working.  Linda did some research and asked her GP to refer her to a clinic specialising in chronic UTI and other bladder conditions.  At her first appointment she was diagnosed with a chronic UTI and she has never looked back.  Read how Linda went from an entire lifetime managing a troublesome ‘weak bladder’ to living a fulfilling, fully productive and happy life.

Background

Its hard to remember a time when my bladder didn’t dominate my life. Constant visits to the bathroom were the absolute norm growing up, to the extent that when I was 11 years old I was hospitalised. Apparently, there was a suspicion I may have a third kidney causing the problem.  When this was ruled out the conclusion was simply that I had a “weak bladder” with nothing to be done.

Growing Up

Children, and teenagers, are adaptable. At the age of 13 I was diagnosed with Adolescent Idiopathic Scoliosis which required constant hospital visits, x-rays and conversations about surgery. The thought of having rods and screws inserted into my spine made thoughts of my overactive and/or weak bladder pale into insignificance.  I guess I resigned myself to making sure I was never too far from a toilet.

Marriage

When I met my now husband the journey to meet his mum was a long one. From Watford to Newcastle is around 350 miles, or as I remember it nine toilet breaks. What an introduction to life with me and my bladder for my new fiance!

Raising a Family

If you need a good reason or excuse for bladder frequency, then pregnancy surely has to be the best! No one would ever question an expectant mum needing the loo every five minutes or kept awake all night by needing to wee. Having a young family, three babies within four and a half years, was the perfect cover. Throughout the years of nights broken by feeds, then nipping to the bathroom, was just what you did. I gave little thought to the fact that I still needed to pass urine a disproportionate number of times a day.

Life

As the children grew up, my husband and I began to enjoy more of a social life again. Visiting the theatre, cinema, gigs and festivals. Dining out in local pubs and restaurants, meeting up with friends and family. Always, however, my bladder issues would dominate our plans. Seats would have to be booked at the end of a row or ideally in a box. As films no longer had an interval, finding the best time to pop out and still keep up with the plot was a challenge. At more than one gig I went to the toilet and couldn’t find my way back to the group I went with. And meals out with friends became uncomfortable and embarrassing as I would often have to excuse myself several times during an evening.

Its hard to remember a time when my bladder didn’t dominate my life. Constant visits to the bathroom were the absolute norm growing up, to the extent that when I was 11 years old I was hospitalised.

Later Life

I have heard it said that these problems can be exacerbated by the menopause. Again, however, my spine took precedence as at the age of 50 I underwent spinal surgery to correct my scoliosis. Months of recuperation involved large amounts of painkillers which wreaked havoc with my digestive system and bowel, which then impacted my bladder. But it was as I recovered, and now post-menopausal, I was to discover just how hideous a chronic urinary tract infection (UTI) can truly be.

I’d visited the doctor on occasion over the years with ‘cystitis’. Ignorant of the facts, and with a fundamental dislike of antibiotics, I was always happy to be given a short course—typically three days—of Trimethoprim.

Now, however, I was finding this did not clear the infection. The symptoms would return, gradually getting worse. At this point my bladder truly did dominate my life. I could be enjoying an evening when suddenly I’d feel the urge to urinate and within half an hour I’d be doubled up with pain in my abdomen, and a hideous burning sensation. Trips to my GP became more frequent and, whilst sympathetic to my pain and dilemma, none of them were familiar with the concept of an embedded infection.

Many evenings involved calls to NHS 111 and night-time trips to the hospital for emergency antibiotics, with blood and other nasties in my urine samples. I purchased the testing strips myself to try and keep track of things, but the reality is the symptoms are what count, these tests are out of date and so often inaccurate and ineffective.

I asked for a referral to a specialist and saw a very nice urologist who was sympathetic to my symptoms. I had urine tests, scans and other investigations as a result of which he suggested another course of antibiotics followed by a prophylactic dose. And if things continued, a cystoscopy.

Around this time I was reading and hearing more and more about interstitial cystitis (IC). It featured in a TV Drama and many Facebook groups contained dozens of people discussing their symptoms and this diagnosis. Natural remedies, dietary changes and supplements featured heavily as advice, but I was aware that for many people this was a condition they live with.

Many evenings involved calls to NHS 111 and night-time trips to the hospital for emergency antibiotics, with blood and other nasties in my urine samples.

Crisis

I had been reluctant to take the prophylactic dose of Nitrofurantoin I had been prescribed and therefore had a small stash on standby. It was whilst out in London for a family birthday that I had one of the worst ever bouts/flares of my life. Taking some of the ‘secret stash’ of Nitrofurantoin eased the symptoms immediately and this to me was the absolute proof that what I had was an infection that needed to be dealt with properly. It was time to find out more and Google sent me straight to Professor James Malone Lee.

Treatment

My first consultation at Harley Street was with the professor’s son Dr Matthew Malone-Lee. We got on well, he was interested in my life and lifestyle, my symptoms and their history. I felt he saw me as a person and not just a lab result. He analysed a urine sample under a microscope and the ‘counts’ definitely confirmed an infection. As a result of which he prescribed 500mg of Cephalexin four times a day. With Hiprex to be added in after two weeks. And this course of treatment was likely to continue for nine months at the very least.

Decision Time

In spite of the symptoms, the positive consultation, and all the evidence pointing to this as the solution, I was reluctant to commit to antibiotics for such a long time. I omitted to mention previously that I had reacted badly to the last course of Nitrofurantoin I had taken, developing a severe rash. In the past, antibiotics had caused thrush, diarrhoea and a general feeling of malaise—was I ready to commit to this?

It was of course another flare up of the infection that prompted me to take that first tablet and commit to the course. Very happily I responded quickly to the antibiotics and the urgency and pain subsided. After two weeks or so I did attempt to add in the Hiprex but it did not agree with me and I continued with the Cephalexin on its own.

Fortunately, the side effects were very mild. Yes, I did feel tired and somewhat out of sorts, but thankfully no thrush or diarrhoea at this point. I attended my first check up and things were going well but of course it’s no good stopping treatment too soon. If the infection is embedded, then treatment must continue until all the bacteria have been eradicated.

At the next appointment I needed to report that whilst much better I was having some discomfort again.  After further consultation, he changed my prescription to 1000mg of Cephalexin three times a day. This higher dose definitely did the trick and very soon I was symptom free.

Covid-19

The pandemic impacted my treatment in that face-to-face appointments ceased. But in addition, I was feeling so much better that I decided against a zoom consultation. Instead, I kept in touch by email with the clinic’s receptionist, Martel (not wanting to merely disappear from their records!).  After a couple more months I was able to gradually taper off the antibiotics altogether.

And Now

It is impossible to describe the difference this has made to my quality of life. Not to have every waking moment, working day, shopping trip and social occasion dominated by thoughts of where the nearest toilet may be. Not to live with the constant pain and discomfort. Even to be able to enjoy a long soak in a hot bubble bath instead of a quick shower or tepid bath with nothing but Himalayan salt!

It is impossible to describe the difference this has made to my quality of life. Not to have every waking moment, working day, shopping trip and social occasion dominated by thoughts of where the nearest toilet may be. Not to live with the constant pain and discomfort.

Reflections

I was very fortunate indeed to have a sympathetic and understanding GP. After treating and referring me himself, initially to the urologist, he was supportive of my seeking treatment from Professor Malone Lee. He was willing to write NHS prescriptions for the antibiotics which was a huge help to us financially and I felt I was under local care.

I felt a little bad at not following up with the urologist. I did receive a letter from him and with hindsight should I have (or should I now?) explain to him why, after researching the options, I felt that the professor’s regime was preferable to cystoscopy, instillations and prophylactic antibiotics, which may cause longer term issues.

I discovered Facebook groups where many people—the majority of whom (but not all) were women—shared similar stories of pain, burning, urgency, discomfort and other issues associated with urinary tract infections. For a little while I believed in the diagnosis of interstitial cystitis (IC). I’m not medically qualified and I am sure that there are many people for whom treatment will be longer, more drawn out and more difficult than my own. But I strongly disagree with IC as an early diagnosis on the basis of negative test strips and outdated and unreliable laboratory tests.

I believe the use of short courses of antibiotics, in an effort to prevent antibiotic resistance, has contributed hugely to the problem of embedded infections. Growing up I was always told that you had to finish a course of antibiotics to make sure all the bugs had gone and didn’t come back stronger. A three day course was never enough to completely eradicate whatever was causing my cystitis and consequently I ended up very unwell.

Looking back to my childhood, I wonder if I had an infection very early in my life, or if that was purely a coincidence. That is something I will most probably never know.

Thankfully I have a wonderful story to tell that even after many years a solution can be found.  I hope that this brings hope to others. Thank you for reading.