My story is probably quite similar to many in that I suffered occasional UTIs every few years in my late teens and twenties. They were fairly easy to treat, responding well to antibiotics and were never recurrent. However, after the births of my two children, both of which were complicated and required strong antibiotics to treat post-partum infection, I experienced UTIs which were much more tricky to shift, needing a few changes of antibiotic before they resolved.  Additionally, I was always aware that only about 1 in 3 of my infections grew anything when sample sent off – they almost always came back as mixed growth or contaminated even though I knew it could not be.

The arrival of my son and my chronic UTI

My chronic UTI began out of the blue about two years after my son was born. Symptoms came on during the night and flared up incredibly fast. Initial antibiotic treatment didn’t seem to touch it, and even when I changed antibiotic a few times, nothing seemed to be working. Even a long course of cephalexin (for a month) didn’t completely eradicate the infection and as soon as I stopped antibiotics it flared up again. I was even admitted for IV antibiotics because the doctors were concerned I might be developing sepsis. Although these gave me 48 hours relief, within 48 hours of stopping the IV, again symptoms returned.

At this point the fact I seemed unable to get a positive culture for the infection became significant and doctors started to say it ‘couldn’t’ be infection even though up to that point they had agreed it had to be. I had a cystoscopy – which revealed nothing. I was discharged without any further treatment and told I had an incurable condition and to ‘try to get on with my life and not obsess about my bladder.’ I had terrible burning on urination- cripplingly painful and relentless. As the infection continued untreated, I began to develop bladder pain too, and shooting urethral pains after peeing. I was also incredibly sensitive to certain foods and drinks – coffee had me in terrible discomfort within about 20 minutes and anything citrus or containing tomatoes or spice was out of the question. I ended up eating bland food and drinking only water. I could not work or look after my children and I did not know what to do.

At this stage I was prescribed several different kinds of pain relief but none seemed to work. I was also pressured into taking some medication for overactive bladder even though I didn’t think I had OAB but this gave me a serious allergic reaction and landed me back in hospital.

I thought my life was over as I couldn’t do anything and the pain was horrendous, this whilst struggling to raise my family and trying to work.

Research led me to a specialist in chronic UTI

I finally, after much research, was able to get a referral to Professor James Malone-Lee and I started treatment with high-dose, long-term antibiotics.

There were times in my treatment when those dark feelings returned – the worst time being when thinking things were getting better and perhaps I might be near to ending treatment, suddenly things got worse and I had to add a second antibiotic for a breakthrough infection. This then triggered the worst flare of the whole treatment which was tough. But it turned out that with this one, I turned the corner – ten days later I realised my flow had gone back to normal. I had had poor urine flow for so long, I didn’t even realise it wasn’t  normal and from there things just gradually improved.  Being able to enjoy a coffee without consequences meant so much.

I’m finally enjoying life – after nearly two years of the right treatment

In total treatment lasted around 20 months and I am now off all medications and able to live life normally, eat and drink what I want.

So do not lose heart and keep going – it is such a slow and gradual process but you will improve. I wondered if I would ever be able to live normally again and eat and drink what I want and so many times I tried to reintroduce things only to find it still triggered a flare. But after 18 months suddenly I found I could eat or drink those things – and it was (and is) wonderful.

• Keep the faith and do not despair – it is a long haul.
• Never say never – there are so many things I thought I would never be able to do, eat or drink again – but gradually as things improved I was able to add them back into my life.
• Many times during my treatment I thought that perhaps the treatment was wrong and the other doctors (who had told me I had an incurable lifelong condition) were right.
• Share with friends and family what you are going through – there is no shame in talking about how a UTI has affected your life. You would be surprised how many are suffering

Find out about UK specialists in chronic UTI

Find out why the tests don’t work

Read more about Professor James Malone-Lee

On the 3rd December 2007, I went to bed a completely happy, healthy and active 18 year old – I was woken up the next day by a severe burning in my bladder at about 6am and it didn’t leave for ten long years. Prior to this, I had had only one UTI when I was 10 years old, it was mild and it cleared up with one week of antibiotics.

I had never felt pain like it, it felt like my bladder was on fire and someone was stabbing it, I was straining to have a wee and nothing came out – I also had a fever. I naively popped a pain killer, thinking it would go away and went to work. I lasted 30 minutes before I was sobbing and screaming with the pain. My mum came to collect me and took me straight to the doctors, my dipstick showed infection and a sample was sent to the laboratory which confirmed an ecoli infection within 24 hours and so I was put on a week of broad spectrum antibiotics. To help you, a broad-spectrum antibiotic is an antibiotic that acts on the two major bacterial groups, gram-positive and gram-negative and is thus directed to treat a wide range of infection causing bacteria throughout the body.

Every day I was still in agony, the antibiotics weren’t even making a dent in my pain and at the end of the week my hero mum called up the doctors and demanded more antibiotics. My GP insisted I have a dipstick test again, this time it showed no infection but my mum insisted I have more. My GP prescribed another week of broad spectrum antibiotics and sent me on my way saying that sometimes the inflammation caused by an infection remained and it would go away in time. That week passed and the antibiotics never touched the pain or took away any of the symptoms – this time I went to the doctors alone where he dipped my urine (no infection) and he sent it off for culture. He told me I could have no more antibiotics and if I was still in pain in a month to come back and he’d refer me. I sobbed that I knew 100% I had an infection and that I couldn’t stand the pain for another hour let alone a month, but my cries for help fell on deaf ears; you believe your GP has the best intentions for you, well I certainly did at the time. However, now I understand that the guidelines GPs have to follow constrain them from effectively treating someone who doesn’t respond to initial treatment.

Read more about the problems with guidelines

Urine analysis says no

The culture results came back as inconclusive, with the microbiologist stating that they believed no infection was there and it had been contaminated. I said to my GP that I knew it was an infection, and he said, “what qualifies you to know?” – it is ridiculous to think that because the sample had more than one bacteria identified that it had to be contaminated, if one strain can infect then why not two together? When you really think about the logic applied it is completely bonkers. You can have infections in the lungs and other organs caused by multiple bacteria, so why not the bladder?

Read more about the Urinary Microbiome and how its discovery is changing how we view Urinary Tract Infections

Desperate self-help measures & a secondary consultant referral

I lasted the month still in agony with burning and stabbing pains and a fever 24/7, dragging myself to work and drinking almost 5L of water and cranberry juice a day (at the guidance of my GP and pharmacist) and was referred.
I waited another six weeks to see my urologist and I held him as a beacon of hope to help me. I saw him and while he was extremely sympathetic and kind his methods of investigation were, quite frankly, barbaric. Because of my age he fast-tracked my investigations and a week later I was a day patient about to have my cystoscopy.

I was so hopeful to finally have answers and signed the waiver to go ahead with it. Two hours later I woke up in a snuggly morphine bubble where there was no pain. My urologist had already been to see my mum while I was still asleep and told her that I had something called Interstitial Cystitis, where there was inflammation on the bladder lining (not the worst he had seen), and so had given me a bladder stretch and cut my urethra to encourage the scar tissue to be less ‘stiff’ – he had said that will give me relief and should reduce my symptoms.

Living with the consequences of an “IC” diagnosis and “these should help” procedures

I went home still in my morphine bubble and was woken up about 4am in complete agony, unlike anything I had ever felt before. I still try and forget the memory of it. My bladder was spasming violently, I was almost incontinent, and the burning had levelled up – no opioid, heat pad or painkiller could touch it. My mum would sit with me while I screamed and sobbed for hours until the exhaustion took over and I would sleep only to be woken up two hours later by the pain to relive it all again. My urologist said there was nothing he could do to relieve the symptoms while I waited for my treatment to begin (bladder instils), and to just ‘try and forget about it’.

My bladder instils started about three weeks later, and during those long three weeks I felt desperately alone and very scared. In three months I had gone from an outgoing 18 year old, socialising and seeing her boyfriend to a wraith hunched over in bed in agony and missing out on all life had to offer.  I am so grateful to my parents for the love and support they gave me throughout all of this.

My instils started, a twelve week course, and in parallel to stop any catheter infections I was prescribed three months of specific urinary tract antibiotics. It took about six weeks but one day my bladder stopped spasming and I had one full hour where I wasn’t conscious of my bladder – it was a miracle. My urologist put it down to the instils, and I trusted that judgement (even though I know now it was the antibiotics) and after the three months the pain had subsided to a dull ache, that while still unpleasant, I could at least live with.

Discharged from Urology care – left to try to get on with my life

I was discharged as having IC but that it had been brought ‘under control’ and I moved with my boyfriend to New Zealand for a year. Of course despite the “IC” diagnosis, I continued to have regular monthly infections, usually caused by lake or pool swimming or sadly sex with my boyfriend. GP visits resulted in the infection showing on the dipstick and that meant further courses of one week courses of broad spectrum antibiotics.

I stopped swimming after I developed a nasty kidney infection and was hospitalised for a week whilst in New Zealand. The IV antibiotics given to me for 7 days that week however finally managed to calm my symptoms down and I went back to being relatively pain free for around six months until my flares began after my return to the UK.

I would flare every two to three months and it would take about four weeks for the pain to go away. Not once did the flares show bacteria on a dipstick or a culture and as a consequence no antibiotics were prescribed each time I visited the GP.

For the next seven years I would spend six months a year flaring and six months feeling ‘normal’. I know now this is common given the bacterial release from the bladder wall when bladder wall cells are shed.

Read more about bacterial flares and how to manage them

I went to three different GPs during this time and each of them said “it is in your head, there is no bacteria there and your treatment for IC was successful”. Only twice I received one week of antibiotics for a flare at my insistence that I had an infection even if it didn’t show up, but I think the GP just wanted to shut me up – the majority of the time I didn’t – I self-managed with Azo – a urinary antiseptic which helped with the burning and pain, heat pads and Dandelion Root tea (which also took the burn away for me).

During these seven years, I was diagnosed with an autoimmune condition, where my body started to attack other organs in my body, the worst of this was that the sight in my left eye became so reduced that I am now almost blind in due to my immune system causing a massive bleed. No specialist could tell me which autoimmune condition it was, I tested negative for all of the known ones – autoimmune Encephalitis, Lupus, Diabetes, Multiple Sclerosis and Crohn’s Disease. Lupus was diagnosed but there is no test to actually confirm it 100%. I managed as best I could, dealing with the symptoms as best I could. I tried to eat healthy and exercise (when my bladder allowed). I could have had steroids but my doctor and I decided against that and I took very high doses of ibuprofen for around a year to control inflammation.

A ruined honeymoon but some possible hope

In 2016 I was on my honeymoon, just as I got on the plane I felt a flare coming and it began full force when we landed in Hong Kong. It was 3am and I was sobbing on the toilet to my mum in agony, and she said “I read something in the paper today about some Professor who treats poorly bladders, let me read it to you”. It was from the Daily Mail and as my mum read the whole article to me a lightbulb went off in my head and I said “that’s just like me”. I started to Google Professor James Malone-Lee and a whole new world of Chronic UTI was opened up. I made an appointment immediately with my GP to see me the day after I got back from my honeymoon.

Read more about how a Chronic UTI develops and intracellular or biofilm infections

Constrained by my GP again – stand your ground

At the GP appointment, I confidently described my history, the considerable research I had done and that I wanted to be referred to him straight away. My GP ‘Googled’ Professor Malone-Lee and his ideas and turned to me and said “he looks like a quack that has a fancy address in Harley Street, I’m not going to refer you to him, I will refer you to an NHS Urologist as you haven’t been seen by one for eight years and you may need another cystoscopy”. I was yet again dismissed, humiliated and directed down a path of barbarism. However now being almost 30 rather than 18, I stood my ground, knowing she was wrong and the whole system was wrong. I told her that no urologist was ever going to torture me again and that if she didn’t agree to refer me, I was self-referring anyway! I felt liberated! I called the Professor’s medical secretary in the GP surgery car park and made a booking for two weeks later.

Getting in front of a Chronic UTI specialist

Meeting the Professor was tantamount to meeting your all-time hero. At my first and subsequent appointments, he inspected a fresh sample of my urine under the microscope and he even allowed me to see the evidence of the bacterial infection through it observing the white blood cells and epithelial cells, both significant markers of infection. We discussed the UTI when I was 18 with the e-coli laboratory diagnosis. He went on to ask which antibiotic brands I responded to or didn’t. He said that if it was originally E-coli then it would make logical sense that E-coli was still present, so he put me on Cefalexin with Nitrofurantoin as my extra antibiotic when I suffered a flare. His thinking behind this was the two can combine to really tackle an E-coli infection. The transformation when I took them was incredible so his hunch was 100% right. He patiently explained his method, what the bladder does and how this happened. I started the Cefalexin and Hiprex (a bladder antiseptic) which he had additionally prescribed immediately, keeping the Nitrofurantoin in reserve as he had suggested.
In the first month, I had three flares that lasted 24 hours each (not the month they used to) and after that I have had nothing. I have been in treatment for three years, with my chart always in a downwards oscillation, until my pus cells counted zero and I was given the ‘all-clear’.

Back to a normal life

I tried swimming again and this time no infections occurred, I now enjoy running and having pain-free sex – all of which used to cause me to flare. The Professor has given me my life back.

And my autoimmune condition you ask? Gone! Since treatment began, my immune systems hasn’t attacked any other organ within me. I am certain that my immune system knew the bugs were in my bladder, but because of the biofilm it just couldn’t find them and so it would start attacking any irregularities in my other organs. I also now know that bacterial infections release toxins throughout the body and my bladder infection was so severe, my immune system was simply overwhelmed and couldn’t reduce the toxic load.

For ten years I knew I had an infection, I was dismissed and given unnecessary barbaric treatments, and this would have continued if my GPs had their way for an undisclosed amount of time.

I am completely well now. In the last three years I have started two successful companies, travelled extensively and redeveloped three houses – I could never have done this without the Professor’s treatment protocol. I still wee a little when I sneeze, I’ll never forgive the urologist for cutting my urethra – but I can live with that!

I am on my final month of antibiotics in October 2019 with the Professor and we are both hopeful I can come off them. We haven’t discussed my plan for the future but it is my intention to discuss with him taking Hiprex daily as a maintenance and deterrent to future bacteria.

Finally to everyone reading my story, this infection is truly awful and especially when it is first taking hold and you just don’t know how to even self-manage the symptoms. It really does take a long time to start to see improvements and my main advice is to be kind to yourself. I wish I had given myself rest days, rather than dragging myself around in agony. The bladder heals slowly and you have to keep the faith that this treatment is working.

Also have a well-stocked travel first aid kit with you at all times, I have one in my car, one at the office, one in my suitcase and one at home and they are stocked with my ‘self-help kit’: Azo, ibuprofen, codeine, heat patch, dandelion root tea and strainer, alkaline sachets and lavender calming spray – it just meant wherever I am I can provide myself with immediate relief until I can get back home. I haven’t used any of mine for two years but I still haven’t broken the habit of having them there and well stocked.

Find out about UK specialists in Chronic UTI

Read more about Professor James Malone-Lee

My pelvic floor is where it started

Six years ago, in my mid-forties, I was diagnosed with pelvic organ prolapse by my urogynaecologist, and advised to use a biofeedback machine to help improve my pelvic floor through the training and guidance of his pelvic floor nurse. As we ladies know, sadly issues with pelvic organs can develop from your forties onwards and it was very distressing to experience this.  However, I used the biofeedback machine religiously, as instructed to try to improve things and within a few weeks, developed a taser-like feeling in my bladder along with frequency, bladder pressure and intense pain radiating from my bladder down my arms and legs.

The urogynaecologist I was seeing in London immediately diagnosed Interstitial Cystitis (IC). I disagreed as I had no history of UTIs and felt this was due to the nerves being over-stimulated. He prescribed an antibiotic, doxycycline (which has an anti-inflammatory effect) and after two weeks my symptoms were gone. I used the machine again on the settings set up by the incontinence nurse and bingo – back to intolerable pain. Another course of doxycycline and everything calmed down. I left the machine alone for two months and on the recommendation of the pelvic floor nurse started using it again but only twice a week at 40% power instead of the 80% she had originally set it at.

I thought all was corrected but it came back five years later

All was great for five years, until a year ago. I was sitting peeing and I noticed my urine stream was very odd, like peeing through a colander. It then felt prickly, like the start of a UTI. I had an old packet of Macrobid antibiotics and started those immediately as we were due to travel to Africa on safari and I didn’t want to have a UTI there without sufficient medical support.

To cut a long story short, things spiralled downhill. I went back to the urogynaecologist I had seen five years earlier and he again, immediately said, IC.

He put me on Doxycycline and I responded well but in the meantime, I had been referred to Professor Malone-Lee. I nearly didn’t go to the appointment as I felt so much better. Prof put me on Cefalexin for two months. My pyuria count was 6. Initially I continued to improve but about four weeks into treatment all hell let loose and I was in the worst agony of my life. Incredible nerve pain, frequency and feeling of pressure. In October 2015 Prof’s clinic had been forced to close temporarily and I was left with no support, no idea where to turn and desperate, alone and very, very frightened. I saw an endless stream of so-called specialists whose advice included cauterising my bladder, and living on pain medication for the rest of my life.

The online community helped me seek holistic treatment

Through a Facebook patient support group for Chronic UTI, and my north London Bladder Support group I managed to find a way through and booked an appointment with Vik Khullar. I found Mr Khullar to be a very sympathetic urogynae, who was very accepting of my research and treatment ideas. He found two bacterial strains in a urine sample and treated me with rotational antibiotics for six weeks. He is a big fan of antihistamines and I followed the low histamine diet. I researched hormones and their role in my situation. I discovered I could have a standing MRI and this really showed the prolapse, particularly the bladder prolapse or cystocele.

I increased my Oestrogel. Things improved but it was a roller coaster. Eventually I sent a urine sample for broth testing to the US via United Medical Laboratories where two bacteria strains were identified. Because of that result, I persuaded Mr Khullar to let me stay on antibiotics for 10 weeks. Unfortunately, the antibiotics that worked best gave me terrible muscle pains and I had to stop them. At the same time, I started a Chinese medical herb trial under the NHS. The herbs are truly revolting but I have grown used to them. I decided to have my Mirena coil removed. I also took a three month course of Symprove to correct the bacterial balance in my gut. I have improved greatly but no one knows why.

I believe my situation was a combination of factors: prolapse, hormones through my peri-menopause and menopausal years, over-stimulation of the nerves by the biofeedback, bacterial infection and the terrible stress from nursing a very dear friend with pancreatic cancer and her death. Almost a perfect storm. Sadly, sex definitely sets things off again.

I felt I had aged 20 years overnight, I’ve lost my confidence, my sex drive and my sexuality. I wish I didn’t know anything about this condition, that it had never touched me. However, I have met the most wonderful group of women – brave, wise and supportive.

By looking at my overall health, I’m on the right track

I am a lot better right now, no antibiotics and have not taken them for a year. I am back at Pilates and yoga, although only once a week. I walk my dogs every day and I no longer take my health or life for granted. I’m feeling much more positive about life and more importantly I am me again, most of the time! I would advise those reading this to:

• Be your own researcher and find what works for you – often it may mean piecing together several things that are contributing to your bladder problems. Don’t think about your bladder in isolation.
• Find a doctor who will really listen. They are out there, but tough to find.
• Don’t always accept what you are told. If it doesn’t fit all of your symptoms keep researching and questioning, you know your own body.
• Live every day as if it is your last, this is now my motto

Find out about UK specialists in chronic UTI

Read more about Professor Vikram Khullar

More about hormones and how they affect the bladder

Read more about perimenopause, menopause and the bladder