I can live a normal, pain-free life –

Carolyn’s story

I’m now 68 and the only UTI attacks I had ever had in my life were about 12 years ago when I was going through the menopause.  They were treated with a five day course of cephalexin and I had no more problems until August 2014 when I felt that familiar feeling of a UTI – frequent painful peeing which got worse and worse.  I realised what it was and thought my GP would just give me cephalexin and it would go away.  There was no reason it should have started except we had just completed a 5 hour car journey without a loo break.

No infection found by GPs

That was when my horror story began.  I saw a GP in Edinburgh where we were on holiday and was given a seven day course of nitrofurantoin.  She also took a urine sample.  The antibiotics helped a bit but left me with horrendous frequency which meant I had to pee every 15-20 minutes.  I received a call from the GP after three days saying that no infection had been found but to complete the course anyway.

On my return home I went to see my own GP who sent off a sample which came back negative again.  He tried me on about four different antibiotics but nothing helped.

The urologist’s diagnosis and treatment

I was referred to a urologist who used ultrasound to confirm I wasn’t retaining urine. The urologist then told me he suspected I had interstitial cystitis and if I allowed him to do a cystoscopy and bladder stretch it would be 90% certain to resolve the problem.  He also told me that it was impossible to need to urinate as frequently as I wasn’t drinking very much fluid.  His attitude was superior and somewhat aggressive.

As I was desperate to resolve this frequency problem, I took his advice and had the bladder stretch.  After the operation he told me my bladder was inflamed and I definitely had IC.  The frequency did not improve and I then started to suffer from constant bladder pain.

The urologist prescribed Vesicare to stop the frequency – this worked at first but after about 2 weeks it stopped working. I was advised to increase the dose to see if that helped.  The side effects were horrific – dry mouth and eyes, blurred vision and I could not cope with any normal activities and was unable to get out of bed.  I started to think my life was not worth living as I couldn’t cope with peeing every 15 minutes, nor could I deal with the ghastly side effects of the Vesicare. I had to give up all my exercise classes and Pilates as any activity made my bladder much worse. I can honestly say at this point in time, I did not want to continue living if this is what life had become.

My next steps

I decided to return to my GP for help and he told me to stop the Vesicare and he prescribed amitriptyline.  I started with 10mg at night and this helped more than the Vesicare and had no side effects. Unfortunately the 10mg soon became 20mg and then 30mg as I needed higher and higher doses to control the frequency. I could not understand how my bladder could be so inflamed for no reason. During my worst times, before the amitriptyline kicked in, I couldn’t talk to friends or family – I just wanted to hide myself away.

I then talked to Bladder Health UK to see if there was anyone near me who I could contact to find out how they were coping.  They suggested I might like to set up a support group for North London area. As I’ve always been a person who likes to be active, I went ahead and did this – I couldn’t believe how many other people with the same symptoms lived a stone’s throw away from me!

Find out more about support 

Through the support group, I was lucky enough to meet fellow sufferers who told me about treatment they were having for chronic UTI.  They had also been advised by urologists that they had no infection and were subjected to batteries of invasive procedures.  Then they found the LUTS clinic at the Whittington Hospital where they were under the treatment of Professor Malone-Lee. He had diagnosed an embedded infection in their bladders and was treating with high dose, long term antibiotics. I went to see the professor in 2015 and he confirmed I had a massive infection and put me onto high dose antibiotics immediately.  He advised me to continue with the amitriptyline at 20mg nightly as he said the infection can take a very long time to clear up. I also took Hiprex alongside the antibiotics.

The recovery was a difficult journey and there were times when I didn’t think I would ever get better.

The importance of good support from family and friends – being honest and open about my illness

I am very lucky to have an amazing husband, family and friends whose support has undoubtedly helped me through this horrendous time.  Once I felt a bit better, I decided to ‘come out’ and made the decision to be totally honest about my bladder problems – after all, our bladder is an important organ in our bodies, much like a stomach or heart – no-one would bat an eyelid about telling people they have a stomach problem or heart disease. I actually found it easier to tell people I had a bladder infection which caused me to pee more than 6 times an hour than to pretend it was ‘something else’. I simply tell people I have a ‘chronic bladder condition which means I need to pee more than usual’. If anyone didn’t really understand, I suggest they imagine having constant cystitis with all its pain and symptoms.

It was so amazing to see people’s reaction to my openness – everyone was incredibly sympathetic and upset to hear of my illness.  Most of them however, still ask me how my ‘problem’ is!  The main advantage about coming out and being honest about your bladder illness is that you don’t have to explain why you need to rush out of the room more regularly than most people; also, if you have a flare, you can tell people just that and not need to go into more detail. I keep meeting people who have similar problems and had no idea they were not alone – many have now joined my support group and/or are seeking help from the Professor.

My interview published in the Daily Mail in November 2016 meant my whole story was now in the public domain.  It was not easy to tell it to the journalist but once I had done so, it made it easier to be completely honest with everyone.

Read Carolyn’s interview in the Daily Mail

A bumpy journey

There were massive disappointments when my illness didn’t seem to be responding to anything.  There were times when I thought things were improving slightly, only to be slapped down a week or so later with a relapse. It was like riding a roller coaster never knowing if it would ever stop. The recovery process was painful, slow, depressing and lengthy. My antibiotics were changed 5 times (due to side effects or ineffectiveness) and I ended up taking oxytetracycline for the last 8 months which seems to have worked for me.

What else helped?

In January 2017 I started seeing Andrew Flower, a Chinese herbal medicine specialist based in London with a specific interest in treating UTIs. He was happy to treat me worked alongside the antibiotics to try to strengthen my immune system.  He told me I would probably need to remain on the herbs for about six months.

I found drinking beer was very beneficial to my bladder and would calm it down if it started playing up.  I drank a bottle of alcohol free beer daily and I am certain this helped me. I could also tolerate lager which meant that socialising was easier.  I found the worst thing to eat was kiwi fruit as this caused massive frequency.

A breakthrough

By April 2017 I realised I was having more symptom-free days than symptomatic ones. Professor Malone-Lee suggested that we could try an antibiotic cessation trial to see what happened. He advised me to remain on Hiprex for the foreseeable future. He advised me to go back on the oxytetracycline if I flared and remain on the high dosage for at least 14 days or longer if the flare didn’t clear. I stuck with the Chinese herbs until November 2018 and I have a stock in case I need them.  I stopped taking Hiprex in June 2018 as they were making my urine too acidic. I then decided to tackle coming off amitriptyline and, with the help of a women’s health physio, cut down the dosage by a ¼ tablet every two weeks until I was able to stop it completely by November 2018. (I tried going cold turkey but I couldn’t sleep and became very nervous and hyper – for anyone who wants to stop amitriptyline or any other similar medication, please get medical support and don’t just stop taking it on your own).

It’s now almost January 2020, I am medication free and although I still get a few very mild flares – mainly frequency triggered by food or drink – each time they’ve cleared up within about 24 hours, with one sachet of Chinese herbs but without having to take antibiotics. I still find some food and drink can upset my bladder – raw onions, strong garlic seasoned food, and anything very peppery or hot and spicy.  I can drink wine and spirits but always with food, to be on the safe side.

I’m now about to go back to the gym and take more exercise.  I’ve lost over 2 stone in weight and am feeling so much better. I guess I’ll always be aware of my bladder but for 99% of the time,  My daughter also suffered from this ghastly condition but fortunately she saw Professor Malone-Lee and, after 18 months on high dose antibiotics, she has been symptom free and living a normal life for the past eight months.

Thank you Professor M-L for your dedication and hard work on behalf of us all.  You and your colleagues have given hope to thousands and enabled us to live normal lives again.

Advice for this journey to recovery

If you are starting on this journey please be very patient and don’t panic if your symptoms seem to go up and down.  My infection did this many times and each time I felt better it was like a weight lifted from me – only to be dropped on me from a great height a day or so later when the symptoms all came back with vengeance. It was almost worse than having constant symptoms – I could see what ‘normal’ was like only to have it snatched away again.

The very nature of an embedded infection means that it won’t clear up quickly or easily. Try to remain as calm as possible as stress definitely makes symptoms far worse.  Travel, some food and drink, exercise can cause flares – we are all different so it’s hard to know what makes some people flare whilst others don’t.

Find contact information for UK Chronic UTI Specialists

Emma’s story

I could only watch with horror as my mum was struck down with what was initially diagnosed as Interstitial Cystitis. A seemingly straightforward UTI had rapidly spiralled into an illness that devastated her life.

She was lucky enough to find out about Professor Malone-Lee’s innovative work at the LUTS clinic at the Whittington Hospital in London. As she began her long-term antibiotic treatment with him, and we learned the truth about the chronic UTI embedded in her bladder, the biggest revelation hit me — this was what I’d been suffering with for more than 15 years.

From cystitis to a chronic infection

I started getting cystitis in my late 20s. I’d buy those cystitis relief sachets by the dozen, guzzle cranberry juice and spend half my salary on D-mannose. Nothing ever helped though, and I’d end up in my GP’s surgery every time, walking away with a week’s supply of antibiotics.

It got to the point that every single time I had sex, I got a UTI, and every course of antibiotics gave me thrush, and I was living in this vicious, hellish cycle of both, constantly sore and in pain. I tried everything the GP recommended — the washing and popping an antibiotic straight afterwards — but nothing helped.

Read more about everyday triggers

I was back at the GP on a regular basis, peeing into a pot, watching them put the dipstick in, and, like a broken record, telling me there was no infection. I was constantly fighting with them to give me antibiotics. I remember telling the doctor that it felt like my UTI never fully went away, that the antibiotics knocked it back and it just flared up again. They looked at me like I was mad though – as far as they were concerned the tests showed no infection.

Read about the issues with standard urine testing and antibiotic treatment

By now, the time between that first bladder twinge and me being curled up in agonising pain on the floor was about 10 minutes, so my GP reluctantly agreed to let me keep a course of antibiotics at home. I ended up getting referred to a urologist who told me my bladder wasn’t emptying properly and subjected me to a urethral dilation. In retrospect, it was a completely pointless procedure.

This rumbled on into my mid-30s, and my UTIs finally calmed down after a period of being single. I then met the man I would later marry — and became utterly paranoid that starting a physical relationship would set my UTIs off again. Thankfully, he’s been amazingly supportive.

Getting treatment with a chronic UTI specialist

My husband and mum talked me into seeing Professor Malone-Lee — as although I wasn’t experiencing full-blown UTI attacks, I constantly had the feeling my bladder wasn’t quite right.

Within 10 minutes of sitting in his private clinic, the Professor had examined my urine sample under a microscope and confirmed I had an embedded UTI which had been causing havoc in my bladder for the last 15 years. The feeling of relief was indescribable. – to know you’re not crazy.

I have to confess I was worried about taking high dose antibiotics long term, you read stories about the damage they do to your body. But sometimes you have to weigh up the risks against the benefits, and I was terrified my UTI would turn into something as awful as mum had experienced. It was never going to go away on its own.

We hoped it might take about a year of treatment. In the end, it took 18 months. I started on nitrofurantoin, but within a few weeks, that gave me awful pains in my neck joints, so I switched to Cefalexin. I took Hiprex alongside it. Apart from finding that Hiprex often made my urine sting from the acidity, I can honestly say my treatment caused me no issues.

I tried to come off after a year as I was symptom-free, but after a few weeks I started getting bladder flares again, so went back onto the treatment. It was incredibly depressing, I felt despondent, as if I’d never get better. But I persevered, and six months later tried again, and as I write this, I’ve been symptom free for nine months. I’ve never wanted to say that I’m ‘cured’ as I do have a feeling that it’s under control for now, but that I will probably always be prone to UTIs and the menopause may well affect me. But for me, the over-riding positive is that I now understand what it is and know how to treat it.

My advice for this journey to recovery

The one piece of advice I would give to anyone starting out with this treatment is to be patient. There’s no quick fix, it’s a long road and you’re not going to be cured in a matter of weeks or months. No one can predict how long it will take, you just have to persevere and have faith. I knew from mum’s experience that it had taken her a few years to recover — but seeing her eventually get her life back was all the motivation I needed to keep going.

Read more about Professor James Malone-Lee

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