These stories have been kindly provided by people who are now infection-free or are well along their healing path. They have followed a variety of treatment protocols. Some names have been changed.
Do not lose heart and keep going. It is such a slow and gradual process but you will improve – Kate’s story
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
I am completely well now. In the last three years I have started two successful companies and travelled extensively – Catherine's story
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.
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?
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.
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.
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.
I am a lot better right now, no antibiotics and have not taken them for a year – Karen’s story
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
It has been nearly 35 years since my first UTI, however I am getting back to living normally – Sarah’s story
From the “kissing disease” to kidney infections
I had my first UTI when I was 15 – it was a secondary infection to glandular fever and progressed to my kidneys. Through my twenties I continued to suffer from the occasional uncomplicated UTI which cleared with antibiotics. The infections were usually picked up on either a dipstick at the GP and/or confirmed by urine lab test. Nevertheless, it was irritating and worrying but soon forgotten once I was well again. During this time, I didn’t particularly have any triggers; I didn’t have food or drink sensitivities and I don’t even remember episodes being related to sex either.
It wasn’t until I was 30 and had a horrendous kidney infection that the real problems began. It was a time in my life when I wasn’t taking a great deal of care of myself, I was burning the candle at both ends. I was working hard, exercising frantically, drinking lots, smoking and partying. I was very thin for my build as I was not eating enough or well.
The kidney infection took about six weeks to clear. I had a couple of rounds of nitrofurantoin, but it came back a week or so after finishing. When it came back the third time, I was extremely ill. I had a sky-high temperature and terrible back pain. I lived alone in a small flat and I remember having nothing to eat because I could barely get out of bed, let alone go shopping. I fainted on my way back to bed from the toilet and woke up in a sticky pool of blood as I’d hit my nose as I fell. In desperation, I rang my parents who lived a couple of hours drive away. They weren’t sympathetic – I suspect given current form, they thought I had a bad hangover. They brought me some food and left, but I did contact a very kind friend who looked in on me for a few days after. I’ve never felt so alone.
I went to see the doctor the next morning. I saw a lovely lady doctor who said that she had just been to a conference about UTIs. She asked me how much I was drinking, “lots”, I replied, “3-4 litres of water a day”. I thought this was the right answer. She told me that was my problem – the antibiotics weren’t working because I was diluting them with all the fluid I was drinking. She told me to limit my fluid to five glasses a day and gave me a two-week course of nitro. I was sent to hospital for blood tests and an x-ray of my kidneys which ruled out any abnormalities.
The two “As” – acute and antibiotics
Although the infection had cleared, I never felt the same again. My bladder was ‘sensitive’. This was when I started to have problems with all the usual culprits – alcohol, sex and spicy or acidic foods. From age 30-40, I started to get acute UTIs more and more frequently. First it was every six months, then every three months, in the last few years I seemed to be taking antibiotics every month and I was never out of pain. It blighted every holiday I went on, I’d always end up in a clinic or A&E somewhere with an unsympathetic medic who sent me off with yet another round of antibiotics.
Another worrying aspect of all of this was the issues I was developing with antibiotics. I was already allergic to penicillin (I was two when this happened). I had developed an allergy to Trimethroprim in my twenties and another antibiotic, the name of which I can’t remember that they no longer prescribe. Ciprofloxacin gives me a racing heart and banging headache. Thus, antibiotics I was given cycled between Ceph and Nitro. Stupidly, I started ‘banking’ antibiotics, so I wouldn’t have to keep going to the doctors. I waited until the symptoms cleared and kept whatever antibiotics were left over. This, of course, only made the situation worse!
I gave up smoking when I was 32 and was outgrowing my party lifestyle. From this point, I started to try to look after my health. My first marriage didn’t last very long, but met my second husband in my mid-30s who I’m still with. He was very sympathetic to my bladder issues but understandably had his moments when yet another UTI ruined yet another holiday or curtailed our life in some way. A great example is how he took me to Bruges for a long weekend for my 40th – of course, I had another UTI on the last day we were there, which made travelling home murder. Another time, we were going to France for a few days to see friends. We crossed on the EuroTunnel, went through passport control and had to come straight back on the next available train as a UTI had struck like lightening. I endured the journey home crying with a towel between my legs.
When I was 41, I moved to Hampshire. It was a terrible time. My mum had terminal ovarian cancer. This was when I really started to have symptoms continuously. Sometimes, cultures and dipsticks were positive, sometimes they weren’t. My new GP was fantastic, he gave me antibiotics on demand and antibiotics to take on holidays just in case – I always ended up taking them.
I went for an ultrasound and cystoscopy privately which didn’t show any abnormalities but did cost the best part of £1000. I was diagnosed with painful bladder syndrome and told that this went hand in hand with UTIs. I wasn’t given anything to manage pain and no further advice. I was just told I was ‘unlucky’ and left to get on with things. However, I do think that it was a good idea to have the cystoscopy as it least it ruled out cancer and that was one less thing to worry about.
On the road to chronic UTI nowhere
I realised that I was in a “treatment cul de sac”. My GP was frustrated too – he told me there was no treatment pathway on the NHS for chronic UTIs or painful bladder syndrome. I started my quest then to improve my health and bladder issues. I saw a very good, sensible nutritionist who recommended an anti-inflammatory diet or Mediterranean diet. She also recommended some supplements including D-Mannose, uva ursi and a very good quality women’s multi vitamin. She was also very against antibiotics. I couldn’t take the multivitamin as it flared me horrendously. In fact, I must be honest, naturals did not work for me and some definitely made me worse. I bought and devoured every book on UTIs, pelvic pain and IC that I could find. I tried all of it – the diets, the supplements and yet my health declined. I seemed to get every bug going around, I developed idiopathic urticaria and had two bouts of pityriasis rosea. My immune system was shot!
Another ‘lovely’ anecdote from this time was when I was working as a contractor and had to stay away from home for a couple of nights a week. I had such bad heartburn from another course of nitro that the NHS 111 helpline insisted on sending an ambulance to my hotel to check I wasn’t having a heart attack. The ECG was fine, but they couldn’t give me anything for the pain. By the time the doctor signed them off to leave me it was two in the morning and I had to get myself together to do a full day’s work. From then on, if I took Nitro, I had to intersperse it with omeprazole.
In desperation, I decided to seek another urologist specialising in IC and came across a Urologist based in Reading. I drove a four hour round trip to his clinic, to be given precisely two minutes of his precious time. He advised me to buy the Uromune vaccine and get myself referred to his NHS clinic for bladder instils. This all cost me around £700 (including £15 for a urine dipstick test!). At this time, my GP had given me a long-term course of low dose Nitro. This was working well – I had my first holiday without a major flare up. I was told to stop taking the Nitro after two weeks of taking the Uromune. Within 24 hours of stopping the antibiotics, I was in the grip of another UTI. I phoned my GP and sobbed, no miracle cure for me and more money down the drain.
The last three years before meeting the specialist who changed my life were the worst. It was at this point that acute flares were so severe they would turn my urine to the colour of claret because there was so much blood in it. I always had a low-grade temperature and night sweats. I was clocking about four hours sleep a night due to pain and frequency. I refused to stay with friends and relatives unless we had an en-suite room because I was so embarrassed by my frequent loo trips. I refused to go public events like concerts unless I knew that I could easily get to a loo. I couldn’t wait for the seat belt signs to go off in airplanes, so I could go to the loo. The brain fog I had due to sleep deprivation, illness and pain was making me doubt my sanity. I can honestly say I was starting to entertain thoughts of suicide.
I missed my first appointment but finally started to heal
I contacted Professor Malone-Lee after seeing an article in the Daily Mail. He was difficult to track down as he didn’t have much of an internet presence. I cried when his PA said he was still open to new patients. I had to wait two months for an appointment. You won’t believe this – given my addled state of mind, I put the wrong date in my diary and missed my appointment. I had to wait a further two months for another. I was devastated!
When I went for my first appointment with Prof. I was very nervous. My bladder was having a rare period of quiescence as I had just finished yet another course of antibiotics. He said, “Did you think I would send you away?” I nodded, starting to well up again. Prof was WONDERFUL, he explained about my embedded infection and showed me all the pictures which detailed the development of the disease. For the first time, everything I was experiencing made perfect sense and I felt hope!
No one embarks on this treatment lightly. Being on long term antibiotics is quite an undertaking. But I was desperate. I couldn’t go on like this.
Prof. prescribed me 1g of Cephalexin twice daily and Hiprex twice daily. Around 3-4 weeks in my symptoms ramped up. I re-read all the information and found that I was taking the wrong dose – 500mg twice a day. I had misread the dosage instructions on the box and was taking the same as my GP would have given me! I upped to the right dose, but the flare wasn’t subsiding. I was due to go away for the weekend and was in an absolute panic. I assumed that the antibiotics weren’t working and phoned my GP and begged him for Nitrofurantoin. The Prof responded to my terrified email within 24 hours but it was too late, I was travelling.
Prof advised me to stop the Nitro and to double dose the Ceph – 4g a day and ask my GP for some Amitriptyline to help with pain. When I had my second big flare up, I had a very upset stomach and was pooing molten lava, but this resolved when I upped my dose of the Ceph – counter intuitive, I know. Flares and an upset stomach seemed to go hand in hand. Taking such high doses of antibiotics was terrifying, but I told myself if my mum could do chemo, I could do this. I couldn’t, however, bring myself to take the Amitriptyline in the end – ironically the thought of it made me too anxious!
At my next appointment, Prof was jubilant – my pus count was down but I was shedding heavily. Everything was going in the right direction, but why was I still in so much pain? Prof explained this was likely to be a biofilm burst and said it was akin to a blister bursting exposing raw skin beneath. He advised me to ‘find my level’ with the Ceph. I found that 3g a day mitigated my symptoms and was tolerable, and I upped to 4g for subsequent flares. I stayed on 3g a day for many months.
The story of my recovery is aptly described by Prof as ‘dampening oscillation’ of symptoms. Flares could be triggered by travel, acidic food, sex, stress, PMT, ovulation – the usual suspects. Pain, frequency and frightening retention were the hallmarks of these episodes. The flares slowly reduced in frequency, intensity and duration. After 5 months, the crippling fatigue lifted, and the night sweats stopped – I no longer felt ‘systematically unwell’. I started sleeping 7-8 hours a night reasonably regularly with only one or two loo trips. I started having periods of negligible symptoms from 8-9 months in. I held my nerve through the flares, reasoning that if I didn’t have a temperature over 38.9, complete inability to pee or visible blood in my urine, I would keep going.
My last appointment with the Prof proved that my sticking with the treatment through thick and thin was worth it. My pus cell count was a big, fat “0”! I am still mildly symptomatic occasionally, but I have long periods of no symptoms at all! I am getting back to living normally. I think I will probably always have a sensitive bladder and my days of drinking wine and eating vinegar dressed salads are over. No doubt I may also be vulnerable to the odd UTI and will need longer and higher doses of antibiotics than most people. However, thanks to the Prof, bladder mischief will be managed. I’ve got my life back and that’s fine by me!
I have no doubt now that the Prof’s theory of the embedded infection is spot on. However, there are still some questions that remain for me. Why do some people get UTIs and some people don’t? Is there a genetic connection? My maternal grandmother suffered and my niece (who, incidentally, has just qualified as a doctor) suffers too. My mother and sisters have each had one UTI in their entire lives. I have friends who have never had a UTI. Why is it that there is no effective pain management for this condition? I hope that the work of the Prof. and others in this field will start to provide some answers. I don’t want anyone to suffer the way I have. It has been nearly 35 years since my first UTI and I wonder how my life would have been different if it hadn’t been for this. The saddest thing is that this illness was certainly a big contributory factor in my deciding not to have children and I am always in awe of people who navigate pregnancy and parenthood with this.
I am appalled at how many people with IC dismiss the idea that they might have an embedded infection. Obviously, autoimmune conditions are more fashionable right now and urine infections still carry a stigma. I often still hide behind IC when I first tell people about this to gauge how they are going to react. I don’t dispute that around 20% of Prof’s patients don’t experience a noticeable recovery in the way some others do, that there are a small portion of people who have “true” IC rather than just being labelled with IC or PBC by the urology profession and there are others for whom sadly an infection means they need hospitalisation and IV treatment because they are so ill, have other health problems and cannot take oral antibiotics alone to treat the infection. However, my hope is that Prof’s approach becomes the gold standard of care, his research will help the difficult cases and that people can be educated properly about this awful condition.
I’m so excited about the future now. I’m really grateful that my recovery has been straightforward. Given how long I’ve been ill, I assumed I’d be a complicated case. I’m 50 next year and believe you and me, I am going to make up for things in my golden years! I’m hoping to qualify as a Personal Trainer and I think I would really like to work with people with chronic illnesses and help women through menopause.
To finish, here are some thoughts on…
Dipsticks and lab cultures
After my kidney infection aged 30, dipstick and lab tests became unreliable. Dipsticks always tested positive for blood, but not necessarily for leucocytes and nitrates. Lab tests seemed to show up a bug around 50% of the time. But I have two experiences to share which made me totally lose faith in these testing systems. The first was when I submitted a sample to the hospital that was the colour of red wine, it had so much blood in it. Lab results came back with no bug culture but ‘high inflammatory markers’. The blood went within in a day of taking antibiotics. My GP and I agreed that I must have an infection and we could not understand why the lab culture hadn’t thrown up anything.
The second experience was when I had just started treatment with the Prof. and was having a big flare. I contact my GP who was keen to do the ‘due diligence’ and get a lab tests. The results turned up a bug which they said was only sensitive to Ciprofloxacin. Given the terrible reaction I have to Cipro this was something I was very reluctant to take. I upped my dose of Ceph and kept my fingers crossed, the flare subsided after a couple of weeks.
The relationship between anxiety and flares
With the benefit of hindsight, I can now see that my journey with UTIs and anxiety kicked off around the same time. My first big panic attack came when I was in the lower 6th at school: it was so bad; my mum called the doctor to our home. From here on it was a constant state of mind – I always seemed to be at DEFCON1-3. Panic wasn’t a thing that came and went, it was a constant companion and I would feel exhausted for days on end interspersed with crippling attacks. The attacks would come out of the blue – especially when I was ‘relaxed’ like sitting watching TV in the evening. I also began to realise that many of the side effects I’d experienced with antibiotics, were not side effects at all, but my terrible anxiety! Prof also believes that ‘stress’ hormones act like fertilizer to bugs which makes perfect sense to me. UTIs contribute to anxiety and anxiety contribute to UTIs; for me it was a vicious circle.
The role of counselling/therapy
I cannot recommend therapy/counselling highly enough! It has been instrumental in my recovery. This has helped me cope with having such a debilitating illness and to manage my anxiety. I had counselling for the best part of two years on an almost weekly basis. It was extremely tough at times. Yes, this was an additional expense but the way I saw it, the first half of my life had been blighted both by my anxiety and the illness and I needed to address this so the second half of my life wasn’t blighted too.
My counsellor who was experienced at working with people with chronic health conditions advised me to ‘devote’ 20% of my time to my illness, it’s the best advice I’ve had. I stopped panicking about having flares and just put my feet up and took ‘all the meds’ until things improved. I stopped trying to carry on when flaring. I learnt to pace myself – i.e. not to over do things when I was feeling well. I was doing more things to gently promote my physical and mental health like walks in the fresh air every day, playing golf, writing my feelings out. I’ve read a lot of self-help books too, there’s always a take away or something life affirming in them. Also, I started being honest with people, saying “no” more often and telling them about my condition and explaining that “I’m not unreliable, I’m ill”. I’m amazed at how many people confided in me that they or someone they cared about was suffering with this condition too.
My pet peeve! I get so frustrated when people go on about drinking lots of water. My advice is to stay hydrated but don’t over drink. I started drinking gallons of water when I had glandular fever aged 15 and I’m sure this contributed to my bladder health’s decline. Prof. told me a story about how one of his lab scientists was trying to grow bladder cells, but all the usual agents weren’t working, so thinking laterally, he peed on them. Surprise, surprise – they grew! It maybe a bit of a leap, but how can your bladder cells grow healthily, if your urine is always so dilute its practically water. Surely that is compromising your bladders health and immunity? These days, I drink when I’m thirsty – end of! Oh, and DO NOT tell me to drink cranberry juice.
Pharmaceuticals vs naturals and supplements
I used to be totally into naturals and alternative health methods. In my late 30s I regularly visited a homeopath who treated me for flares, but ultimately, I always ended up back on antibiotics. Naturals and complementary therapies did not work for me. I do not think they will help you once you have an embedded infection and if you are very ill. However, I have reintroduced d-mannose though which I find helps with my mini flares now, but they did nothing for the big ones at the start.
As I improved, I re-introduced the multivitamin which my nutritionist recommended and found I could tolerate it. I also take additional vitamin C with my Hiprex and I really believe that if you can tolerate it, it will increase the efficacy of this regime. I could not take normal vitamin C in the first year of treatment – it killed me! I also take Evening Primrose oil for hormone balance. I have no doubt that gut health is going to be compromised with long-term antibiotics and so a good multi-vitamin is wise. In the beginning I tried supplements from Tiny Pioneer as these are developed for bladder sufferers, but I couldn’t tolerate them either.
I know some people can’t take Hiprex. To be honest, I really could not tell whether it was making my symptoms any worse as they were so bad anyway, so I just kept going.
I’m definitely peri-menopausal and am experimenting with an oestrogen cream for down below. It does help with urethral symptoms and in particular, my remaining retention issues vanished, but I need to get the dosage right i.e. remember to use it regularly!
Antihistamines deserve a whole paragraph of their own. Whenever, someone says they are flaring on the Facebook support group, I always recommend trying antihistamines. I discovered that antihistamines helped me when I was on holiday. I have a terrible allergy to mosquito bites, so I took a Loradatine and the mosquito bite stopped swelling and my bladder pain improved within in an hour of taking it. I’ve been taking cetirizine long term on the advice of my GP. I did try stopping it every now and again, but my bladder symptoms always increased within 2-3 days. It doesn’t work for everyone, and to be honest it didn’t always work for me during a full-on flare. Nevertheless, antihistamines have made a significant difference to me overall. I have continued to take them for the idiopathic urticaria – but this has also improved a great deal during Prof’s treatment as I think my immune system is now balancing.
My biggest concern about this illness is that there seems to be no effective pain management. I take NSAIDS which certainly reduce pain, but they don’t help entirely. It would also seem anecdotally that things like amitriptyline also don’t work well enough and cause other side effects. I wish the medics would do something about this as getting out of pain is so important while recovering from this condition.
The role of diet and exercise
I have been into exercise my entire life, I was a gym bunny for years and as I got older, I loved outdoor pursuits – surfing, swimming, running, cycling, sailing, powerboating and canoeing. I wanted to do ‘adventure’ racing and I began training towards the Scotland Coast to Coast race. As you might imagine, my bladder put a stop to all of it. I had terrible retention from long runs and had to squat over a bowl to squeeze out urine. My training was constantly interrupted by acute infections despite keeping up my fluid on long training cycles and runs. I finally realised that I couldn’t carry on with this anymore – I was gutted. Exercise was so important for my mental health and flushing out all those anxiety hormones.
I tried low impact exercises at home but couldn’t sustain any programme because I felt so tired and ill. I tried Pilates and yoga but unfortunately, anything involving my ‘core’ or pressure on my tummy (think cobra pose or forward folds) also caused flares. So, I took up golf. Fortunately, at the club I joined, there is a loo on the 8th hole and plenty of bushes! This was an absolute saviour to me because it was low impact exercise in the fresh air and I made new friends. My counsellor was delighted!
The last couple of months I have been doing an online beginners’ exercise programme and I have managed to sustain it. I’m so thrilled. The programme includes all the things that I couldn’t do before – high impact exercises, core work and stomach crunches. So far, no ill effects. I hope to start running again soon. Prof. said he would get me back to exercise and he has!
Over the years I have tried many diets both for weight loss and to manage my UTIs. I have no doubt that the latter led to me having a terrible relationship with food, disordered eating and fear of eating any food other than that prepared by me. I have spent a fortune on ‘health food’, supplements and diets over the years. I have turned down social events as I was frightened that I would be ‘made’ to eat forbidden food. Those days are well and truly behind me. I have been re-educating my appetite using the principles of ‘intuitive eating’. I have gained about 10lbs due to the antibiotics which is annoying, but I am now healthy and eating a balanced diet and that is far more important!
I’m fortunate that my husband, bar the odd episode of frustration, is incredibly supportive and sympathetic. However, I have been dumped by previous boyfriends for getting a UTI. People are still ignorant enough to assume it’s a personal hygiene issue or that cystitis is a sexually transmitted disease. Sadly, I include some doctors in that! I can’t tell you how many times I was referred for STD testing, even when I was married, or asked about how I wash. However, I remember crying to one kind doctor that I didn’t understand why I had another UTI as I was ‘so clean’ (this was when I was totally into Angela Kilmartin bottle washing method). He handed me a tissue and said, “I see very dirty people in my surgery who never get UTIs, it’s not your fault”. Bless him.
It’s been a long tough road, but my specialist has given me my life back – Julia's story
In October 2014, I woke up one morning and went to the toilet as usual, however I didn’t feel any relief from going. I guessed it was a bout of Cystitis but had no rhyme or reason as to why it had occurred. I spent a few days trying the usual over the counter remedies but nothing seemed to work. I didn’t have the usual burning, just a constant need to go to the toilet. Prior to this, I had had a couple of UTIs during my teenage years, twenties and thirties, all easily resolved with antibiotics.
I went to see my GP who thought it was a “stomach bug” and was told to just wait it out as my urine was negative on their dipstick test. I went back a week later feeling no better. I had blood tests, various urine cultures and everything was negative. I was given Trimethoprim for three days which did nothing to help. I was given another course of Trim followed by a course of Doxycycline. Nothing helped.
I thought it was Interstitial Cystitis because no-one could diagnose me
A few weeks later I was referred to Urology and Gynaecology. After a very painful cystoscopy, another course of antibiotics, internal and external scans – nobody could give me answers or provide help. By now the pain had taken over, a gnawing, pulling and scratching feeling every time my bladder filled, it was like cats were using my bladder as a scratch post, I could barely walk and would drag my right leg around as trying to walk normally was incredibly painful. I was prescribed Oromorph and Amitriptyline for the pain which barely touched it. It was now Christmas and I was in a terrible state both mentally and physically – after googling the symptoms I had given myself a life sentence of Interstitial Cystitis (a word used by my GP and Urologist although not specifically diagnosed with it). I struggled to work full time and luckily my understanding employers allowed me to work from home in the afternoons. I could barely function and became very withdrawn from society.
Seeking support and a chronic UTI specialist
In January 2015, I found Bladder Health UK, a lovely lady, that I spoke to on the phone, helped to calm me down and pointed me in the direction of Dr Catriona Anderson at the Focus Medical Clinic and a wonderful supplement called D-mannose. The D-mannose helped with the pain. I had a consultation with Dr Anderson and sent a sample for her to culture using the Broth Culturing technique.
I was so relieved when she found E.Coli and Enterococcus. I was prescribed the correct antibiotics at a high dose (these were specifically tested against the bacteria in my bladder). I stayed on one antibiotic for six months, supplemented with D-mannose and oil of oregano. I felt about 50% better. We then switched to another antibiotic and things improved greatly from there. I added grapefruit seed extract and Hiprex (methenamine hippurate) which also assisted in my recovery.
I changed my diet completely to avoid any food or drink that could cause inflammation or more pain. I remained on the diet for just over 12 months, it was really hard to deny myself alcohol, caffeine, sugar, grains, dairy and various acidic foods but the results were amazing. I think I helped to starve the bacteria and allow my bladder the chance to heal from the inflammation.
It wasn’t just my bladder that needed help – I was at rock bottom
I also needed to get help mentally as the whole experience had really taken its toll. I was very self-absorbed and anxiety levels were through the roof, it would crash over me in waves and leave me completely overwhelmed. I thought I was strong and could deal with most things in life, 10 years as Lifeboat Crew had shown me just how strong I could be but this illness truly exposes you to the core. Through recommendations from the group I started taking Kalms and took a 12-week course of Cognitive Behavioural Therapy (CBT).
CBT is not for everyone and I think it depends on where you live as to how good it is but I must say that I found it really helpful with the incredibly useful tools given to me to help me deal with things. Mindfulness is fantastic but the best things I did was teach myself to live in the moment. It sounds easy but is incredibly hard to stop your brain from wandering off to dark places. I would go out for a walk with my dogs and concentrate on the walk, the dogs and everything going on around me – the colour of the sky, the birds singing, the colour of plants and flowers, make and colour of cars passing by etc. The more I did it the easier it became and I would recommend that working on how you feel mentally as well as physically is essential.
I also explored a potential hormone link and use local plus systemic HRT as my blood tests showed, at the age of 44, that I was going through the menopause. I think this also helped me along my path to healing and I would recommend that you also explore this avenue if you feel it may be of benefit. It certainly eliminated all vaginal pain and made everything feel more plumped up. I was very fortunate to settle very quickly on the systemic HRT and my hot flushes have gone, along with all the other awful symptoms of the menopause.
Dr Anderson’s holistic approach has given me my life back
I’m still taking antibiotics but at a low dose of one at night. I feel so much better and I’m living a normal life now. I still have the occasional need to go to the toilet urgently but it’s manageable – just a reminder that it’s still there though. Without Dr Anderson I don’t know where I would be now, I’m so thankful that she found a cause and, although it’s been a long tough road, she has given me my life back.
What helped me:
• Speaking to an organization such as Bladder Health UK who directed me to a specialist for Chronic UTI – there is help out there.
• The support of my partner, friends, family and my animals even on days when frankly I wouldn’t want to be around me.
• Looking at my body systemically, what could be making things worse in terms of my age, diet and lifestyle and reducing or changing these and then once I felt better gradually reintroducing them. HRT was a key missing piece I needed
• Joining an online support group – they got me through some dark early days as they understood what it is to live with a chronic UTI. I now repay this through my own support of others on the groups.
• Facing my own fears and accepting that I needed help to change these dark thoughts through the guidance and support of others.
I’m back to my foodie lifestyle – Lauren’s story
I’m an Aussie gal and have been living and working in the UK for a few years now. Up until 2016 I had had two UTIs over the years and was otherwise very healthy. Then in 2016 I had two more UTIs, in January and August, the January one being more severe, but August never left me. My symptoms were never severe frequency or urgency. At my worst, I was still able to hold urine for upwards of 3-4 hours, and on my worst day I would take 8-9 loo trips. But I was in constant discomfort, the hot/burning bladder feeling, heaviness, and a dull feeling of constantly needing to pee, which built in intensity over the hours between bathroom trips.
My GP referred me to a urologist in the UK because of the ongoing symptoms and I had a cystoscopy (without hydro-distension) which showed nothing, and an MRI – because they thought my pain could be endometriosis related (I found I had more severe pain around ovulation). I was left with no diagnosis.
During all of this, I wasn’t sleeping or eating because of my symptoms and my mental health spiralled downwards due to lack of diagnosis or understanding what was happening. I felt like I was being ignored by doctors, because they didn’t know how to help. I was offered numerous depression and anxiety medications and started taking amitryptaline, but I knew that if the pain stopped, my mental health would recover.
Giving up work and the treadmill of tests, IC treatments and medications
I had to quit my job in the UK and return home to Australia. Once home with my parents, I had a cystoscopy with hydro-distension, and laparoscopy to check for endometriosis. A very small patch of endo was found and removed, but it is unlikely that this was causing me any issues, and wasn’t on or near my bladder. The result of the cystoscopy revealed pinpoint bleeding in three quadrants, and I was diagnosed with intermediate level IC.
Whilst in Australia, I was put on amitriptyline and later Vesicare to try and deal with the pain, and the bladder awareness, and to help me sleep. My specialist gave me three months (eight rounds) of ilAuril instillations and these did seem to calm my pain significantly over that period. I had a six-week course of acupuncture, which I think was very helpful, if nothing more than to release some stress and anxiety, and my acupuncturist tried me on a few herbal treatments. Interestingly, after my first three days on herbs, I tested positive on a urinalysis for the first time in nine months, so I wonder if the herbs helped draw out the bacteria?
Once I had the results of this urine analysis, it confirmed my suspicions that because it had started with a UTI, my chronic pain was down to this. After all, how could this come from nowhere and be caused by nothing? I also found that when I was given short courses of antibiotics, my symptoms would ease, not disappear entirely, but they would ease.
Connection over social media & a new route to treatment
Given how isolated I was feeling whilst out in Australia I joined one of the IC support groups on Facebook, where I saw mention of Professor Malone-Lee, a chronic UTI specialist based in London. I started doing a lot of research, reading as much as I could, and then decided to book an appointment, what did I have to lose? I started preparing to return to the UK from Australia, to find out either way what was going on.
At my very first appointment with him and despite awful jet lag, I could finally understand that I was suffering from a chronic UTI which had been misdiagnosed and incorrectly treated. He had examined my fresh urine sample under his microscope in clinic and diagnosed me based on my white blood cell and epithelial counts seen in the urine. He gave me a prescription for Nitrofurantoin and Hiprex (methenamine hippurate) and once the prescription was filled at the chemist, I started treatment. I was also told about a patient support group on Facebook for patients of the Professor and other specialists helping those with Chronic UTI and joined this. To have a community of his patients around me 24/7 really helped.
Within a month my symptoms were easing, I saw a big improvement after adding in the Hiprex, and after four months, I was switched to Trimethoprim, I got better and better. For me the critical point of his treatment was the dosage and length of taking medication. No more short course, low dose antibiotics as I had been previously given in the UK and Australia.
Stopping the IC meds due to successful treatment for a chronic UTI
At the three month mark I stopped Amitriptyline, at the six month mark I stopped the Vesicare. To be honest I could have stopped it earlier, but was too scared! I am now 10 months in treatment – the same amount of time I was ill. I can eat and drink as normal. I was following a version of the IC diet before and food did still bother me during the first few months of treatment, but I just kept trying things. I only avoid large quantities of tomatoes and coffee now. Even wine, spirits and cocktails are fine. I have sex with no issues, I exercise regularly, I go out with my friends, I date and travel as much as I can. At this point on 95% of days I forget I even have a bladder. My life is almost back to normal, in fact, I think it’s better than it was before, because I appreciate it more.
I am due my next visit with Prof in within the next month and we’ll see what my counts are up to, but to be honest it doesn’t bother me too much either way, as I just want to continue to feel good. But I don’t think I’m too far away from trying to come off the antibiotics. Fingers crossed.
Finally, I would say to people reading my story, I’ve been very lucky in my treatment, and from what I have seen and heard from others, not everyone has such a smooth road. Everyone is different, but we all have hope! I’ve noted below to help, the important things for me throughout my treatment:
- Try not to get stressed out or anxious when you have a bad day. I try hard to keep things in perspective and stay calm. It will pass!
- Take inspiration from the other amazing people on the Facebook groups for chronic UTI. When I am having negative days, I remember those who are battling on when they have children and families to look after, or are pregnant, or those who do physical, demanding jobs and still turn up for work every day.
- Keep trying foods and drinks. For me, almost the most devastating part of my “IC” diagnosis was the diet. I’m a proper foodie. Yes, sometimes I paid for it the next day, but with persistence, and trying things when I was well enough, I’m back to my foodie lifestyle.
My life is a complete turnaround – Katrina's story
My story started in October 2013. I was 19 and at university for the first time, living on my own and I got my first ever UTI. It was awful, I’d never felt pain like it, each time I went to the loo, it was agony when I tried to pass urine. I had lower stomach pain, pain in my kidneys and most frightening of all, blood in my urine.
Having never experienced this before, I called my mum. I was so lucky because she drove to uni to collect me and she took me straight to a local urgent care centre. They sent my first sample to the lab which came back positive for bacteria – but the niggling feeling never went away even with a 3-day course of antibiotics that they prescribed.
Sadly, for various reasons, I ended up leaving university. For three years after leaving, my life was a constant battle of wondering when my next acute attack of UTI would occur. They were on occasion sex related but would also come on after exercise or just normal stress! There wasn’t a point in the day where I didn’t think about them.
I started an apprenticeship which was office based. I was getting up to go to the toilet constantly and drinking water all day. The doctors kept prescribing three day courses of antibiotics which would help the symptoms subside but the symptoms never fully disappeared and would come back as soon as the antibiotic courses finished. I had searing pain, felt constantly uncomfortable, fidgety, there were sharp stabbing pains in my kidneys and bladder with the whole area feeling so sore. I spent too much of my time hunched over in bed.
Time out from daily life and the UTI emotional rollercoaster
So many days I spent off work, in pain in bed. My kidneys hurt, I cried all the time, I was scared to leave the house. I barely saw my friends, my relationship with my boyfriend at the time was strained, no one understood. I was lucky enough to be invited on holiday with his family a few times however on both trips, I got sick and had to hide it, they thought I was just grumpy.
There was a point where I couldn’t exercise. I was scared to eat certain foods, certain drinks. I didn’t want to go out and I stayed in all the time. It was so tough to see my friends going out and I was upset that it had been taken away from me. I was quick to anger with family and friends and could be short with people when I wasn’t feeling well. I knew this wasn’t me but what could I do, my ongoing UTI was making me feel like this.
I was anxious to be around people in case they found habits I had picked up weird. I was always on edge and when my symptoms were bad could be very fidgety. Even questions such as ‘why do you drink so much water’ could send me over the edge.
In May 2016, three years after my first UTI, I had an attack so bad that I was peeing pure blood. My mum got me an emergency GP appointment and she came in with me. Everyone could see that my sample was completely red yet I was told my sample was fine and there was no indication of infection. My mum was fuming.
Computer says no and IC on the horizon
I’d had enough, all hospital sent samples were negative but I was peeing blood? How was that normal? Although I was really scared about going to see a specialist, my GP finally referred me to my local hospital for further tests. I had an ultrasound before seeing the urologist and the nurse told me ‘I was too young to be having bladder problems’. I have NEVER wanted to shout at someone so much in my whole life.
The urologist was very dismissive. As the ultrasound had been negative, the next step, he said was to have a look internally via a cystoscopy. He diagnosed me with interstitial cystitis (IC) and gave me a sheet full of ‘safe food and drink’. I came out of that appointment crying and feeling like I had been ignored despite everything I told him during the consult. There was no way I was going to accept his diagnosis based on just one conversation, I KNEW antibiotics helped and knew there was another way.
Employment wise it was a struggle. I was lucky in that whilst I was doing my apprenticeship, I could work from home and had flexible working arrangements in place. So many times, I would wake up at 2am in searing pain, getting no sleep and this really saved my life.
However, once I finished my apprenticeship when I was 22, I went to work for a well known corporate construction company who weren’t so accommodating. I lasted six months until it got too much; I was burnt out and stressed from trying to keep my head afloat. They said I ‘wasn’t capable’ due to my sickness record and I knew I should take some time out, find a part time job and get better.
It felt so isolated but decided to join a couple of UTI forums so I could research self-help treatments. I tried ‘herbal’ supplements such as oil of oregano and colloidal silver which I believe may have also contributed to help keep symptoms under control. I visited a Chinese herbalist, tried a few, but aside from being disgusting, I like to trust my ‘gut feeling’ and they just didn’t sit with me…
Fellow sufferers showed the way
Finally, in the summer of 2016, I joined a Facebook group dedicated to Chronic UTI and took the decision to see a specialist based in London, Professor James Malone-Lee who treated people from all over the world like me. I was so nervous before my first appointment but he couldn’t have been kinder, reassuring me that I would be fixed, this after looking at my urine sample under his microscope. Not a cystoscopy, x-ray, ultrasound or other tests in sight.
I won’t deny that initially things were really up and down. Sometimes for months, I felt like I wasn’t getting anywhere with this and doubted the treatment completely. What had I done especially as I could only see him privately and it was a lot of money However each time symptoms flared or I had an issue with the antibiotics, I would contact his clinic and he would either ask me to book an appointment to check my urine, see him in person or he would provide an email explaining why I was flaring, what we should do treatment wise and advise if I was experiencing any side effects from the medications. From the beginning I was placed on Nitrofurantoin and Hiprex, one an antibiotic specifically for UTIs and the other an antibacterial which stops the bacteria from multiplying particularly if they emerge from the infected bladder wall cells. When symptoms changed, I was then prescribed Oxytetracycline and then Doxycyline along with the Hiprex. All the time monitored so carefully through urine checks and regular appointments.
We stuck at it and gradually I noticed that symptoms started to disappear. The first symptom that subsided over a period of time and then disappeared was the agonising pain when urinating but I would say the symptom that has taken the longest to go was the awful nerve pain in my bladder and pelvis. I’ve found keeping warm and having a hot water bottle to hand helped so much. Cold weather can still be a trigger but I know now to keep warm.
Life has turned 180 degrees
Nearly three years on from that first appointment with Professor Malone-Lee, I eat what I want, drink alcohol, travel, and go running!!! My life is a complete turn-around. I now no longer constantly think about ‘what if’ I just ‘do’ without any fear! Looking at my career in construction, I am in a similar role to that of two years ago and it could not be going better. I am not only praised every day but I have worked full-time solidly for a whole year! There was a point where I never thought I would see the day and thought I would bed bound forever.
I take nothing for granted but I’m also hoping that shortly with my specialist’s guidance, I will be able to stop taking the antibiotics. I really have progressed that far with the right treatment.
I am a big believer in meditation and the range of benefits associated with it. Practising mindfulness and yoga have also helped me especially in a ‘flare period’. You must always remind yourself ‘its okay to rest’ that is how you heal. I would also like to recommend a book called ‘You can heal your life’ by Louise Hay. It is a bit spiritual but I like to look at things from all angles. I used to always be so anxious, since doing the above I am always told how calm and relaxed I am, I believe this helps the body heal.
Finally, and most importantly, you should want to get better. It’s easy to sit on Facebook groups or social media and complain. Let me tell you the sooner you stop having a ‘pity party’ and focus on the good/positive aspects of your life, the sooner you will feel better. Illness starts in the MIND first.
Challenge yourself. I wrote down goals I wanted to achieve (I didn’t date them but did them when I felt ready) including;
- A long haul flight
- 5K run
- Work full time
And so far, nearly three years into treatment I have done all of the above. You have to look at the little achievements on your journey as everyone’s’ will be different but when you can look at how far you’ve come, it’s the most encouraging thing you can do!
Pain isn’t forever, you will get better – I AM PROOF!
Thank goodness I found two specialists that were able to help me because they understood my chronic UTI – Hannah’s story
My bladder problems started in 2013 shortly after I was catheterised following a partial bladder resection to remove a nodule of endometriosis. I’d suffered endometriosis since coming off the contraceptive pill to start a family. The pill had obviously been masking my symptoms and it was at a severe level resulting in the need to have surgery when I was 25. As part of the procedure and during recovery, I was catheterised for a month and shortly after the catheter was removed, I began experiencing problems with my bladder. The symptoms crept up slowly and intermittently to begin with and then I had sex and didn’t wee afterwards and BOOM-the next morning it felt like a full on UTI.
Prior to this, I had not suffered from recurrent UTIs, only having the odd attack which settled very quickly either with a short course of abs or over the counter self-help treatments.
Laboratory test says no
I went to the GP and nothing showed up when he used a dipstick to check my urine but because of my recent surgery he sent the first sample off to the laboratory. This continued for months. I submitted various urine samples to my GP but the standard NHS test kept coming back as negative. I was certain I had a bladder infection and I was really upset about these continuous negative urine test results. The bladder pain was slow to progress in the beginning, but gradually it became unbearable and I was in daily pain along with frequency. At the end of urination it would burn and then I would be left with an aching and painful bladder. My frequency was about 10-15 times a day. If I stood for too long it would feel like the bones around my bladder/vagina were burning and heavy.
The symptoms became so bad that one day I took myself off to A&E where bacteria did show up, along with ‘contamination’. I later learnt that this means more than one bug is cultured but the NHS deem it cross-contamination and thus because they cannot grow one single pure bacteria, the sample is considered a fail and no treatment can be offered. Unbeknown to me, this was going to be the cause of a very long battle with an embedded bladder infection, undetectable by standard NHS urine testing.
After the A&E visit, I was prescribed the usual short courses of antibiotics, which helped settle things to around 80% in terms of bladder pain and frequency but as soon as I finished each course, my symptoms returned full force. I ended up with C-Diff because of all the short courses of antibiotics.
The walls close in
I had to stop work because I was unfit to function. I was incredibly depressed because no doctor was able to find what was wrong with me and I became more stressed about whether I would every get better and be able to return to work and live a normal life.
I couldn’t socialise with friends or have a normal sex life with my partner because of the pain and we desperately wanted to start a family. I lost a lot of weight because of how anxious and depressed I was. I was up a couple of times in the night but generally lying down seemed to help my symptoms. I would use Amitriptyline for the pain at night, I found it was the only helpful pain medication but it didn’t completely take the pain away and I had to keep increasing the dose. My GP had trialled me on various different painkillers such as co-dydramol, gabapentin, pregabalin and codeine but they either didn’t work or just made me feel nauseous. It was Amitriptyline or nothing.
My GP had no other option but to refer me to a urologist on the NHS. This experience turned out to be absolutely hopeless! The urologist put a camera in my bladder (known as a cystoscopy) and because nothing was visible he simply told me it was all in my head and down to the stress “of trying for a baby”. I should add that on top of this, the cystoscopy was very painful and traumatic! I came out of hospital feeling like I had been totally dismissed by the medical profession.
Left on my own in severe daily pain, I became suicidal. I tried numerous other therapies and remedies such as acupuncture, d-mannose, changing my diet, etc but nothing worked. I was categorised by my GP and urologist as having ‘Painful Bladder Syndrome’ or ‘Interstitial Cystitis’!
Research, research, research and research a diagnosis
It was only when I researched for days on end via the internet and using Facebook support groups, that I came across Dr Catriona Anderson of the Focus Medical clinic in Staffordshire. I contacted her and sent a urine sample via post because of the distance between us. She organised a broth culture and when she got the results back, my sample was found to have E.coli and Enterococcus! I was SO relieved to finally have an infection confirmed, and I felt like I wasn’t going crazy after all! This automatically helped with my anxiety and depression. I felt that there was light at the end of the tunnel.
I started on high dose antibiotics and within two weeks felt soooo much better. Over the next few months I would still have flares and bad spells but for the most part I felt on the right track. Each time I flared, I would contact her and she would either change the antibiotics or advise on how to manage the flares.
Unfortunately I still wasn’t able to go back to work. The cost of treatment privately was really difficult and I had read about a doctor much closer to me and decided to get a second opinion. The NHS clinic of Professor James Malone-Lee who is based in London found the same bugs in his sediment culture as Dr Anderson had done in her broth culture – e-coli and enterococcus.
He assured me that he would not give up on me, and that we would get a hold of this infection, but that it would take ‘dogged persistence’ and the trialling of different combinations of antibiotics for possibly quite some time. I appreciated his honesty.
Once I started on the antibiotics, along with the amitriptyline that I had continued to take, my pain started to subside. Over the course of the last three years with the Professor, I was incredibly well looked after! Both he and his team were a godsend to me! Gradually over time my white blood cells and epithelial cells fluctuated, but slowly they came down. I had very few flare ups, and each time one happened, the Professor adjusted my antibiotics and the flare was brought under control again. The amitriptyline had no effect without the antibiotics, but together, I was pain and frequency free 98% of the time.
As the infection started to go, I noticed subtle changes such as not needing to go to the toilet as frequent, or managing to have sex without flaring, I could eat what I liked and managed to reduce my pain meds without the pain returning.
Motherhood and my life back
In total I was on antibiotics for approx 2 ½ years, starting in 2014 (I think!). Now I can live my life again, go to work, socialise, exercise, make love, and most importantly – I am now a mother to a wonderful son.
No other doctor would have touched me with a 10ft bargepole during my pregnancy and diagnosed with an infection….but the Professor did. He kept a very close eye on my pregnancy with more frequent check-ups and provided me with pregnancy friendly antibiotics. He has been my saviour and for that I am eternally grateful to him and his wonderful team! I also slowly came down from 40mg to 15mg of Amitriptyline during my pregnancy. I never thought that this would be possible! When my infection was at its worst, I was taking 110mg Amitriptyline per night and it still wasn’t touching the pain.
I would also like to mention that, at no point under the care of Professor Malone-Lee have I contracted C-Diff. I had hardly any side effects, and if I did, then the Professor would straight away adjust the medication regime. Thrush was the only issue on antibiotics but I kept this in check with Multigyn Actigel which you can buy at Boots or Superdrug.
I have now been off antibiotics and pain meds for over two years. I have returned to work as a counsellor on a part-time basis so I can spend time with my little one. I don’t doubt that I may suffer from bouts of cystitis in the future but thank goodness I found two specialists that were able to help me because they understood my chronic UTI after months and months of hopeless NHS testing and seeing specialists who just dismissed what I was saying to them about my symptoms because the tests said no infection. I now know what to do and who to speak to as soon as any symptoms flare up.
Honestly I would finish by saying to people going through all of this; freaking out doesn’t help (easier said than done, I know!). You have to accept that this is going to be with you for a while as it is not easy to get rid of but it is possible! Look after yourself, rest as much as you can, and try to notice to small changes (they happen so gradually that you might miss them), they are the indicators that you are getting better.
I can live a normal, pain-free life – Carolyn and Emma, a mother and daughter 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!
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.
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.
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.
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.
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.
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.
Now I have a life, I am happy, but I have been to the darkest places over the years. I am so glad I hung in there even though at times I had no hope – Dannii's story
I began having UTIs after becoming sexually active at 17. In fact I’d never heard of cystitis until I experienced my first one. I was really quite frightened as my symptoms were constantly needing the toilet and nothing would come out with lots of stinging and burning and I simply did not know what to do. I remember distinctly thinking this is the worst pain I have ever experienced. My dad went with me to the GP surgery and during the appointment I had to pee into the sample pot provided (that was fun given how they are not designed for women). I remember being in the doctor’s office when the dipstick came up positive, I said ‘Thank God!’ and she said ‘I’ve never heard someone say that before’. I was given three days of Trimethoprim and symptoms settled.
Sex was a trigger
To be blunt every time I had sex an acute UTI would flare up. My dipsticks always tested positive and I was given short course antibiotics, Trimethoprim until it stopped working and then Nitrofurantoin that I took for three to five days. However, one day during the summer holidays in my first year at university, symptoms just didn’t go away, the antibiotics stopped working. I was left with bladder awareness, urethral pain and back pain and something not feeling right. I had become used to acute UTIs at this point from all the recurrent UTIs I had previously suffered from, so I knew what it felt like, and I knew this was similar but not the same. My gut feeling was that it wasn’t a normal UTI. My pain was a lot less sharp than an acute UTI but the constant discomfort was still unbearable and when the dipsticks stopped showing white blood cells (leukocytes), protein, nitrites or blood in the urine, all markers GPs use to diagnose a UTI, I knew I had a bigger more overwhelming problem.
I was 19 years old when my UTI became chronic and I had just finished my first year at university studying broadcast journalism. I had to drop out of university, I lost all my friends because I couldn’t go out anymore, I lost my career plans, I thought my life was over at 19. I lost my freedom. I felt like life was going on and I was just watching the world go by with me not a part of it. I thought I would never meet a partner and was worried sick how I could live without being able to work. I struggled with severe mental health issues including anxiety, depression and suicidal thoughts.
I was also battling really painful periods which I found really exacerbated my bladder symptoms. Thinking back over the last few years, one thing I did pick up on was my ongoing use of tampons when I had acute UTIs. I now know that bacteria can transfer from the anus to the vagina and urethral opening because of the tampon string and I do wonder whether this helped to contribute to things alongside each time I had sex.
I gave up on my GP but wasn’t prepared for the experience at my local hospital
At this point, I decided that I need to see someone other than my GP for further investigations, things weren’t right and I simply couldn’t face a life with ongoing bladder problems. I must admit I found my GP surgery utterly clueless, insensitive, arrogant and extremely unsupportive each time I had to see them about my bladder to the point they hindered my treatment by refusing antibiotics and dismissed anything I tried to explain to them. Their attitude didn’t help the ongoing anxiety I was struggling with, it simply made things worse.
Finally after finding the courage to confront them, my GP referred me to a urologist at the local hospital. Over the period of three years I had a cystoscopy, laparoscopy and ultrasound scans both internally and externally. I must have seen six specialists and yet each time I was told, there was nothing wrong with my bladder and at best they could only diagnose me with Painful Bladder Syndrome or Interstitial Cystitis. Because of my painful periods they considered that endometriosis could be contributing to my issues but at the time, nothing was found to confirm this. I tried low-dose antibiotics, amitriptyline, bladder instills, pregabalin and nerve block injections, none of which touched my symptoms and I was becoming increasingly reliant on high dose controlled painkillers to help. The specialists I saw seemed more than happy to let a 19 year old girl leave their consultation with no hope and expected me to put up with it. Two specialists called me a mystery, which to a young girl was terrifying and to this day I am disgusted with the treatment I received from these ‘experts’. I couldn’t believe that the bladder would inflame itself for no reason, the body is way too smart for that and mine had started with a UTI.
Finding support online
I was in the car with my Dad one day and I distinctly remember saying to him ‘Dad, I’m the only person in the world with this aren’t I’. That is how I truly felt. He told me ‘No, absolutely not’. I hadn’t wanted to reach out and join IC social media support groups because it felt like I was making it more real by doing this, but I decided I needed to reach out and find others. I joined the Chronic UTI Women’s support group on Facebook back in 2012 when it had only 30 members and at the time was an IC support group (though much more open and accepting than others, as the focus was on finding different treatments). I started to actively post and spent all my time researching, I was so desperate.
After a while, the focus of the group changed and those people still active in the group started to post about bacterial bladder biofilm infections and intracellular UTIs.
Chronic UTI specialists who listened
After about a year or so, my father and I found an answer with a couple of members who started to post about Dr Catriona Anderson at Focus Medical Clinic. We began to learn more and more about chronic UTI, bacterial biofilms and how the bacteria in a UTI have the ability to embed themselves into the bladder wall making them resistant to antibiotics.
I realised all the science made sense, having read research published by Scott Hultgren, Alan Wolfe and Linda Brubaker, all researchers and clinicians based in the US looking at these types of infections and the urinary microbiome. I booked an appointment with Dr Anderson, who made sense of everything for the first time.
Her knowledge of bacteria was amazing; how they affect the bladder, even the symptoms I described meant that she was able to explain how certain bacterial families lead to these symptoms.
More importantly, the fact that she spent well over 1.5 hours with me at my first and subsequent appointments made me feel that I was working with someone who wanted to educate me, meet me half way to help treat me and not just get me out of her consulting rooms after 30 minutes and present me with a large bill. After being told by top urologists ‘I was a mystery’ and ‘go back to uni and you will forget about it’, this was so refreshing and reassuring.
After my appointment, we organised a broth culture. Dr Anderson explained that a broth culture more accurately represents the growing conditions of bacteria and or fungi. Her lab place the urine into a Trypticase Soy Broth (TSB) for 3-6 days instead of being placed directly onto an agar plate or petri dish for incubation. One critical point is that the temperature for the broth mixture is closely controlled which allows the microbes in the urine to evolve as they would in the body. The urine is incubated at 35 degrees celsius until growth appears. If no growth is found in three days the sample is left for up to another three days. After the broth process the bacteria are placed onto agar plates and incubated again at 35 degrees celsius for about 24 hours or until significant bacteria and/or fungal anaerobes emerge on the plate. Once the infecting bacteria are identified, an ABST (Antibiotic Sensitivity Test) on them is carried out so that she can see which antibiotics are sensitive or resistant to the bacteria identified.
After I had submitted my first broth culture, Dr Anderson followed up with me to advise she had found the following bacteria, Klebsiella, Proteus, E-coli, Enterococcus, Staphylococcus aureus and Staphylococcus epidermis in my urine and she decided to start me on the antibiotic Cephalexin for a month. We would do a broth culture every other month and I would try the antibiotic suggested from the results for a month to see if I had any relief in symptoms, though for me this didn’t happen. We tried a few different combinations as well as some natural supplements such as oil of oregano, D-mannose powder and colloidal silver.
Unfortunately just over a year into treatment, Dr Anderson had to close her clinic for a couple of years and wasn’t able to continue to clinically support me. This was really difficult for me as we were working so hard together to try to get on top of my symptoms but the Chronic UTI support group I helped to admin also contained members not only in treatment with Dr Anderson but also Professor James Malone-Lee. At the time, his NHS clinic was not open to new patients and therefore I booked an appointment with him in the winter of 2017 to see him privately. When a patient with Dr Anderson, I had only taken antibiotics for a month or so each time as I was so worried about side effects but in seeing Prof ML, I realised that I had to give the medication longer to see if things would improve. This was a big step for me and having the ability to connect with others in treatment with Prof M-L meant I could see how people were doing in their treatment regimes after several months of treatment on the same unchanged antibiotic regime.
I also had to change my understanding from a broth culture for bacterial identification that would help to guide my treatment alongside my symptoms to the urine microscopy that Prof uses. If you don’t know about this, your fresh urine sample is examined under a microscope in the clinic. The urine microscopy measures levels of epithelial cells and white blood cells. It is different to a urine culture and will not identify bacteria or antibiotic sensitivities.
White blood cells in the urine are indicative of inflammation in the bladder and/or urethra – this is part of your immune system’s response to a bacterial infection. This same system also sheds infected bladder or urethral epithelial cells to prevent the infection becoming established on the walls of the bladder or urethra. The clinic treats based on a patient’s symptoms and this urine analysis following over 10 years of clinical and research study into chronic lower urinary tract symptoms and infections.
I remember my first appointment at his clinic. It was a long day and my boyfriend at the time and I had got up very early to drive to London, worried about finding a parking space and the traffic. Prof was exactly the person that everyone had described to me, kind, caring and willing to listen to my infection history. He looked at my urine sample under his microscope and even thought my counts were 0/0, he told me that I did have an infection going by my symptom description of a constant dull ache and daily awareness in my bladder. I was put on Cephalexin 1g twice a day to start with and also Hiprex, a urinary antiseptic. Over the next year or so I made several trips down to London to see Prof and have my urine examined. I will admit he had to swap me to several different different antibiotics and eventually we determined that a combination of two antibiotics was necessary in my case alongside Hiprex. This can be common for some where an infection is multi-bacterial, needing the support of two sets of antibiotics to cover the bugs causing the symptoms. I knew from my broth cultures with Dr Anderson that I had more than one bacteria in my urine so this made sense. Once I was on two antibiotics alongside the Hiprex, things started to bite in terms of treatment.
I had to stop the high dose antibiotics in 2019 for for a few months because I was developing problems with my stomach and they were causing me lots of nausea. This obviously worried me being off antibiotics for this period of time but interestingly whilst I had flares, they weren’t as extreme as I had previously had. In the support groups I helped to run, I found that people who were experiencing the same nausea and gastric issues managed this by putting the antibiotics into clear gelatine gastric resistant capsules which you can purchase on Amazon. Once I found out about these capsules I restarted the antibiotics and since then have had no problems.
One thing that I did notice was that when I started with Prof I had no epithelial cells at all which suggests my body was not fighting the infection. As soon as I started treatment I began to see epithelial cells but I should add that my white blood cell count has always been 0 or very low and this continues. I know this will be a slow process to clear the infection given how the bacteria embed into the walls of the bladder but with epithelial cells now showing up on my counts, I can see that my body is fighting the infection by shedding the infected cells on the surface of the bladder wall and hopefully this will continue so that eventually even the deepest infected cells will clear.
Another strand to my treatment – a Rife machine
One area I have always been interested in is complementary medicine – something that Dr Anderson uses in her practice and we used during my treatment with her. Whilst at home and having time to look at different online groups, I came across Rife machines. They are a machine that treats based on physics and the scientific fact that everything in the universe is an electrical frequency. If you omit a pathogens frequency with a generator, it causes that pathogen to shatter and die. They aren’t cheap but the results people have been seeing in using them for different conditions has been substantive and after chatting through this with my Dad, we decided to purchase one. I have now been intensively using a Rife machine for several years which I believe works and has contributed to me being better. It was able to identify several bacteria that were found in broth cultures with Dr Anderson and also picked up the inflammation in my bladder during biofeedback scans. When treating with it, it caused huge chunks of epithelial cells to come out in my urine, I had never seen anything like it before and it was definitely down to the Rife machine, as we tested this by coming on and off the treatment regime prescribed by Professor Malone-Lee and monitoring any changes.
Stress – a hidden block to healing
I am going to be honest and say that my relationship at that time with my boyfriend of several years was very difficult and looking back I’m not sure it helped when I was trying to heal. I was anxious enough as it was trying to manage my infection, battling depression because I simply couldn’t see a way out of the endless cycle of antibiotics and pain and also not able to contemplate either going back to college or trying to find a job. Sex was really difficult for us and whilst he was very patient, it wasn’t an equal relationship. My lack of confidence about life meant I wasn’t as strong as I am now.
In 2018 my boyfriend left me and I hit rock bottom, finding myself in a desperate place. I know now that the emotional stress of this relationship and subsequent break-up helped to contribute to my ongoing symptoms – the bacteria really do respond to stress. I’m so grateful to my family for all the love and support they gave me during this time and my beloved cat, Harry. When things seemed bleak, they were there.
However during 2018, despite being close to giving up before I had even started, I made the decision to began to study at college again on a part time basis. I knew from such a low base I had to do something to help myself rather than relying on others. From there things got better and better. I met a wonderful, kind man later that year who I am now in a relationship with and he treats me like a princess. He is understanding and patient and he turned things around for me emotionally. I was terrified of dating with this condition and did not know how to tell someone about my condition and how it could affect sex. I thought to myself ‘what young man would want to be with me with this condition when they could be with anyone?’. When I told him he told me if anything it made him like me more that I was so honest with him and felt so comfortable to tell him. In 2019 I continued my studies and I began volunteering as a Childline counsellor. Initially I was terrified of these commitments and worried I would not cope with them, but that was not the case at all. I found that I managed to cope really well and I went from strength to strength. I began to be able to make plans without considering my bladder.
To help with symptoms, I kept using my Rife machine and continued to take the antibiotic regime prescribed by Prof. None of this interrupted my ability to be able to carry on my studies and I found that my own confidence had grown, meaning I could overcome my fears about going out, socialising with friends and could actually start thinking about the future.
So where am I now? Better, much better
My symptoms have lessened very gradually over the last few years and the antibiotic regime I take, Nitrofurantoin and Pivmecillinam plus Hiprex now keep things under control. I won’t deny that in my search to get well, it has cost both me and my family a lot of money. It shouldn’t be this way and I’ll continue to fight for myself and others so that the diagnostic and treatment methods used by Chronic UTI specialists are available to everyone, free at the point of care in the UK. I now have a referral to the NHS LUTS clinic at the Whittington hospital run by Dr Rajvinder Khasriya who uses the same diagnostic and treatment protocols as Professor Malone-Lee (she trained under him and has co-authored many of his research papers). With referral, my boyfriend and I can now save for a deposit for our first house.
I distinctly remember seven years or so ago being awake at night feeling like my bladder was being blown up like a balloon. I also remember being terrified to urinate because the pain was so bad afterwards. I have been with Professor M-L for three years and to be honest, the way I can notice how much I have improved is by what I can do with my life now. Everything this illness took from me, I have taken back. I live my life again, I feel normal, I don’t consider my bladder before making plans. I feel normal most of the time and feel true happiness.
I still have general bladder awareness and occasional back pain but I would say I am 90% better than I was. The difference in my life is incredible. I was bed bound for seven years, had no job, couldn’t study, had very few friends, reliant on controlled pain medication. I never left the house because I suffered from crippling anxiety so I couldn’t go on holiday. I couldn’t go to the cinema, go swimming or do anything leisure wise as I had to worry about my bladder first. I had nothing going for me apart from my cat. in 2019 I travelled to three different countries and began drinking alcohol again. I’ve made lots of new friends and made loads of plans with them, without thinking twice about my bladder. In 2020 I secured my first job, completed my level 3 in counselling skills and have been accepted onto my level 5 diploma after which I will become a fully qualified counsellor. The controlled pain meds are a thing of the past.
I had planned to take my dream trip to Florida which was booked and had to be cancelled due to coronavirus but I know that I can now travel and make these type of plans to places I thought I’d never make it to. Instead I had two amazing weeks on the island of Mallorca with Alex. To top it all I returned home and didn’t flare or need to do anything to help my bladder.
I am excited, and I am not thinking twice about my bladder. I have a wonderful partner of two years who is supportive and understanding and we have a happy, healthy and loving relationship. We are about to buy our first home now I am able to work and can contribute towards our mortgage and our future. All these things I never thought I’d have and I believed this for so long. For seven years. Now I have a life, I am happy, but I have been to the darkest places over the years. I am so glad I hung in there even though at times I had no hope. If I hadn’t, I wouldn’t be experiencing all these things now that make me so happy and grateful to be alive.
In closing, I’ve added the following points to help and encourage anyone reading my story.
- Never give up and never lose hope. There are positives in every situation if you look hard enough, even in getting this condition. It ruined my life, and pushed me to my limit, but it gave me strength, resilience, bravery, empathy, understanding and it made me grateful for what I have.
- Read, read and read some more to wrap your head around this condition and how it works. This understanding will help you to calm your mind when things get tough.
- Join a social media support group that focuses on Chronic UTI but be prepared to take breaks from it when posts seem overwhelming. It’s too easy to spend all day responding to every post and making comparisons to your own situation. I have found that stepping back and meeting my friends or family in “real time” has really helped.
- Listen to music you love to silence any thoughts that make you feel panicked or worried but also let yourself feel these feelings and then let them go.
- It can take a long time to get better, but the most important thing is that scientifically and clinically it can happen. At one time people were diagnosed with IC and that was it. When I first got this condition there was nothing online to support people like there is now. It turns out this ‘incurable condition’ is actually treatable and you can get well.
- If your current regime isn’t helping, remember there are new treatments being worked on and there are always alternatives to try. Often there is an underlying root cause as to why you have developed a chronic UTI – don’t just fix the infection, fix all of you by working with holistic practitioners and looking at your own life situation. You alone are responsible for your own health.
- Never give up on your life because it is too precious and you will feel happiness again, even though you probably won’t believe it right now. I used to read success stories and feel so sad, feel like it would never be me. I never thought I’d be here writing this success story out, but here I am! NEVER GIVE UP. You are worth more than that and there is ALWAYS hope.
It is so lovely to be able to commit to games again and know that I will be well enough to play – Wendy’s story
First of all, I would like to say how lucky I am to be able to write this. I cannot believe how my life has changed.
I had my first UTI aged eight. I am now 70. In those days, I was told to drink barley water but the UTIs continued throughout my school life. I had a letter for school from my GP excusing me for loo trips during the school day and I was sometimes sent home. Friends’ parties and organised school trips were not part of my life. On top of all of this, when I was 16, I contracted rheumatic fever and was then put on a four year course of antibiotics to treat this. I had no UTIs in that time. I realise now that was due to the low dose antibiotics.
Childhood cystitis carries into my adult years
In my late teens I met my husband and we got married at when I was 20. I then experienced 18 months of continual UTIs, the classic honeymoon cystitis. Each attack was every 3-4 weeks treated with short dose antibiotics. The same year I got married, I had a cystoscopy and a urethral stretch. I remember that one infection went into my kidneys which caused pyelonephritis and I really was very ill. My doctor said that he had tried every antibiotic available at that time and was stumped to know how to deal with it.
I suffered with urgency, frequency, bladder pain and spasms, burning, feeling that I had thrush in the vulval area and vagina as well as a swollen genital area. I felt very sore and heavy, almost like everything was falling out and there were horrible sharp shooting pains. It often felt like my bladder was holding a gallon but only a dribble came out. There was pain at the beginning and/or at the end or urination. I could go on but put simply I was a mess. I was unable to make and keep plans, I could not make any commitments.
However, I was a working lady and shortly after getting married we had 2 children. Sometimes I had to have time off work but I always managed to soldier on. As I always got thrush with antibiotics (no one mentioned probiotics in those days), I avoided doctors and urologists and treated myself with cystitis sachets from chemists. After all, I had tried all the antibiotics and already had investigations which didn’t find any anatomical problems so what else could they offer? I will be honest and say my husband and family cared not a jot about what I was going through. I suffered in silence and embarrassment. In those days, you did. They were “women’s problems” and you put up with them.
These UTIs stayed with me all my life. On average, I suffered an attack three or four times a year and yes, sex was sometimes the trigger. My system of using sachets worked fine until the sachets stopped working. I was 60 at the time.
At 60, life stopped and the tests and IC treatments began
My doctor put me on a year’s course of low dose, prophylactic antibiotics, nitrofurantoin. This worked great but once I had stopped the antibiotics, the UTIs returned with a vengeance.
Lawn green bowling was a hobby that I loved and I bowled three or four times a week. But suddenly I could not bowl as I never knew when I would be ill and things could change from one hour to the next. My social life became zero.
My GP put me on Oxybutynin which is a medication for overactive bladder but that gave me serious retention. Finally, after five years of this, he referred to a urologist. The urologist diagnosed a prolapsed bowel, a prolapsed bladder, vaginal atrophy and Painful Bladder Syndrome/Interstitial Cystitis. I was referred to a colorectal surgeon who also diagnosed a dysfunctional pelvic floor and slow transit digestive system. I was then referred on to a pelvic floor therapist and a dietician. It seems everything south of my waist was in a sorry state. One highlight was a gynaecologist who tried to insert a pessary, OMG she hurt me so much I could not sit down for a week!!
My urologist prescribed 25 mg of Amitriptyline to help with the pain and sleep, 10,000 mg cranberry tablets (which proved to be useless), an acid free diet and lots of water (6/8 glasses a day). The dietician simply gave me a list of vegetables not to eat. But the pelvic floor therapist worked hard (and so did I, and still do!) to re-engage my pelvic floor. I was also given Vagifem for my vaginal atrophy, I used this daily for six weeks and now 2-3 times a week, it has made a difference. The amitriptyline worked for a while, but then I had to up it to 35 mg and then 50 mg. My GP also put me on Gabapentin. At first a dosage of 300 mg, then 400mg, 500mg and finally 600 mg. These never got rid of the pain completely but made it more bearable.
To help my gut and slow transit, I also decided to make and drink kefir, which is a probiotic drink to repopulate the gut with healthy bacteria. I found I got a lot of relief with bicarb, Azo tablets, Buscopan for the bladder spasms, paracetamol, ibuprofen, ice packs and hot water bottles.
But my life was unbearable. I was unable to leave the house some days, tied to the bathroom. I sometimes went to the loo 40 or 50 times a day, day and night!! And it was nearly always painful each time I did! By this time, I had remarried and my second husband was extremely upset to see me in so much pain and unable to help. At one point, I said to my hubby “If this is life I don’t want it!!” and I meant it.
A connection with fellow sufferers and seeking a new opinion
I joined a lovely Facebook group for those suffering with chronic infections and met lots of lovely people all suffering the same infections as me. I felt less lonely but so sad that we all suffered so much and there seemed to be the same story repeatedly, continuous infections and the same testing and diagnosis of IC or PBS, treatment of which didn’t seem to resolve anything.
There was a lot of talk in this group about Professor Malone-Lee, a specialist based in London who was treating patients diagnosing them with an embedded infection and using long course high dosage antibiotics to resolve symptoms and give people their lives back.
When I spoke to my urologist about the Professor, he assured me I did not have an embedded infection. But I decided to go and see him to rule out the embedded infection idea and then I would try something else. At the time, I would have considered bladder removal, I was so desperate but I was aware that I would have to go through a lot of procedures before the NHS would consider it.
I saw the Professor in June 2017 as a private patient. His clinic is not close to where I live, so the journey to see him had to be planned very carefully to have plenty of access to a toilet. He checked a sample of my urine under a microscope and told me I had a chronic embedded infection. He was so kind and considerate at that first appointment but I was so stunned at the diagnosis that I genuinely can’t remember much more of that first appointment. Luckily my hubby asked the Professor “can you cure her?” to which he replied “of course”. I left in tears of happiness at finally someone giving me a concrete diagnosis and a way to resolve everything.
He put me on an ongoing course of antibiotics (Cephalexin 1000 mg x 2 daily) and Hiprex, an antibacterial (1000 mg x 2 daily). Within one month I had no pain or symptoms. I continued to take prebiotics and make my own kefir (a fermented probiotic) and was lucky to only have one tiny bout of thrush which responded to treatment with Canesten cream despite the high antibiotic dose.
All IC meds stopped and I’m now off antibiotics
By September of the same year, I had stopped the Amitriptyline and Gabapentin. I now only have the occasional niggle and that is when I am shedding epithelial and white blood cells into the urine, a sign that my body’s immune system is responding to any pathogenic bacteria. I am also on no painkillers at all.
In finishing my story, I have been off antibiotics for 10 weeks now. I now see Professor Malone-Lee every three or four months. I didn’t go back to the urologist who had diagnosed IC/PBS when I was 65 but my GP is delighted with my improvement and avidly reads all the paperwork he receives from Prof after each of my appointments. I’ve also been lucky in that all the medications prescribed by the professor privately my GP was happy to provide on the NHS.
Over the years I had had many urine tests – most coming back negative of course. I have since seen those test results when I requested copies from my GP and I often had white blood cell counts of 50/60 yet was told ‘no infection’. Those tests which did come back positive for infection also showed that I was resistant to cefalexin yet that is the antibiotic I took when I started treatment with the Professor. Obviously low doses were insufficient to kill off the bacteria and it needed a long term, high dosage to do the trick. Alexander Fleming said in 1945 that persistent low doses of antibiotics would only make the bacteria resistant. He knew what he was talking about. Thank goodness that dear Prof Malone Lee does too!!
For me, I feel that in addition to the antibiotics, working with a pelvic floor therapist, managing my gut issues, diet changes and continuing to use the topical oestrogen to help with the vaginal atrophy have all contributed to my improvement over the last year or so. If something doesn’t feel right in your pelvic floor, go see your GP or gynaecologist. I had no idea of the problems I had until I was seen by a specialist. Treating my vaginal atrophy has helped make things so much more comfortable and on top of this, no surgery for either prolapse. I decided as part of my healing journey to turn vegan so no more slow transit and my gut feels very happy on the homemade probiotics. Even Prof is now advocating Kefir for his patients.
Enjoying life again
One joy for me is that I have now been able to return to my bowling life, which is very social. I played throughout this last winter in an indoor league, which we won. I am also playing outdoor bowls again, indeed even playing for the county. It is so lovely to be able to commit to games again and know that I will be well enough to play. I am also able to eat and drink anything I want.
I would strongly advise anyone to consult Professor James Malone-Lee, either through his private clinic or in his NHS clinic, whatever is appropriate for you. He truly knows his stuff, he is always available to us, his patients, at the end of an email. How many other consultants do that? I was very sceptical when I went to see him but am so, so glad I did.
I believe treating the bladder in isolation is pointless – there is a reason you ended up with a chronic bladder infection – Lottie’s story
I experienced my first ever UTI in September 2011 when I was in my early forties. It was treated and gone in two days. Then two years later in 2013, the UTI symptoms returned, which were slightly different to my first one. I would describe them as not a stinging or burning sensation on urinating but constant intense need to pee.
It was horrific. I couldn’t sleep at night, and spent many hours crying in the bathroom. The feelings of pressure, inflammation, a tingly urethra combined with a drippy feeling plus frequency but never urgency, meant I became very tired and grumpy. I was angry, as well as feeling helpless. Not being able to focus on my children was awful as this condition was taking all my energy and thoughts.
As I was training to be a nutritional therapist and had seen success in treating both myself and family for health conditions using natural remedies, I decided to send my sample away to the US for analysis to a laboratory that had been recommended to me. Initial results showed that I had a staph infection and I treated these with natural remedies. However, I then developed an enterococcus infection on a further laboratory test which became the dominant and remaining nuisance!
Staring with conventional treatments and then turning to complementary therapies
Despite my strong belief in using alternative remedies, I started to research specialists treating people for recurrent UTI and came across Professor Malone-Lee. I was living in London at the time and his clinic was very close to where I lived. At my first appointment, I was diagnosed as having an ongoing infection via his symptom checker and then through one sediment culture, the more detailed urine culture he was using at that time. I initially took antibiotics for six weeks but I decided that after this period I wanted to continue treatment using natural alternatives.
Given I have Hashimotos thyroiditis and sadly experienced premature menopause age 39, I wanted to treat my whole body rather than my bladder and I have focused on this through nutritional therapy, supplementation and because of my early menopause, balancing my hormones naturally. I would also advocate mitochrondial therapy and chinese herbs as they have significantly helped me.
I quickly became symptom-free and this has continued. If anything, I have a low bladder capacity. An average wee is 250 mls. I can hold up to 500mls if I want to but feel the need to go around 200mls. I know that unlike many, to have experienced two UTIs so far and getting into early treatment both naturally and synthetically has meant quicker symptom resolution.
Don’t look at the bladder alone – look at your whole body health
Personally, I believe treating the bladder in isolation is pointless, there is a reason you ended up with a chronic bladder infection and I don’t believe it’s just bad luck. It is the culmination of many things, which are not optimal. I would advise the following:
- Diet is important. If your gut microbiome is unhealthy it weakens the immune system leading to inflammation and infection through the body. It’s often said that the gut is your “second brain”. Look to work with a nutritionist and if needs be, submit a stool sample for analysis to check for parasites or an overgrowth of bad bacteria in the gut. Supplementation and diet can help bring things back into balance. This will help your immune system to fight infections through the body.
- Our circadian rhythms are also important. Think of circadian rhythm as the body’s metronome, if this is out, everything on a biochemical level will be and that is what leads to chronic health issues.
- I would advise minimising blue light exposure – none in the evening – so put that tablet or phone down. I go to bed at 9pm and wakeup/get up 5.30/6am. I take this opportunity to get outside and walk or meditate.
- Get outside in the sun whenever possible, practise barefoot grounding, drink clean water and meditate.
- Most importantly, your health is your responsibility, do not look to others or rely on others to fix you, no one else is more invested in you than you.
18 months on and I am a very different person, I’m not yet 100% but I am 100% better than I was – Tina’s story
I’m sure I’m very like many others who have suffered from recurrent poorly treated or untreated UTI’s over many years leading to a chronic embedded infection.
Life with cystitis – from childhood to adulthood
When I was 13 I suffered from my first bout of cystitis, I was diagnosed, given antibiotics and sent on my way. From the age of 13 to 22, I had UTI symptoms every month or so, burning, urgency and frequency. If something showed up on the dipstick I’d get a course of antibiotics and if it didn’t I’d be told to drink cranberry juice and avoid acidic food and drink.
In my mid twenties my symptoms changed to just have discomfort, frequency and urgency, no burning and I was avoiding sex at all costs. I decided to try and sort it out altogether so I spoke to the doctors, they diagnosed me with honeymoon cystitis and prescribed prophylactic trimethoprim a very low dose to be taken each time after sex. This worked for a while, I’d still get pain, frequency and urgency every time I had sex but these would fade after about a 7-10 days each time.
A change of doctors led to my new practice refusing to prescribe prophylactic antibiotics, I had to prove each time I was ill that I had a UTI but the tests never showed a UTI. Over the next few years I had UTI symptoms every time I had sex but my doctors wouldn’t believe that it was caused by sex and said it must be a coincidence! I was left being told it was all in my head, no professional would believe me or listen to what I had to say, even though I had been suffering with this for many, many years and knew my own body. At this point, I had lost all hope, by avoiding sex I wasn’t ill unless I exercised, so I stopped that too and haven’t drunk wine for around 25 years. This all affected my mental health and wellbeing, I just wanted to be “normal”.
The dipsticks and urine analysis said no infection thus no referral to see a specialist
I then met my husband and everything was great except, yep you guessed it sex. We went for years with me avoiding it, leading to the both of us being frustrated and eventually I went back to the doctors to try and resolve it. Again, I was told unless a UTI showed up on the dipstick they wouldn’t treat me or refer me to a urologist. To be honest at that point I just gave up, I had to accept that if I wanted to be in a loving relationship, I would have to be ill for 7-10 days each time after sex, it didn’t really make it very appealing.
Around two and a half years ago when I was in my mid-forties, I got the same old feelings after sex, namely urgency, frequency and discomfort. I went to the doctors, no infection showing, they sent it off to the lab, no infection showing and so would not give me antibiotics. This went on for weeks with the doctors refusing treatment, I remember sitting in the doctor’s office sobbing and begging them to take notice of my symptoms not their test results but they wouldn’t. By this time I had constant 24/7 feelings of urgency and frequency I couldn’t concentrate on anything nor sit down, go in a car or go out I was at absolute rock bottom and felt life wasn’t worth living anymore. It was one of the most desperate, isolating experiences of my life.
Guess what – IC when finally in front of someone
I went back to the doctors and asked to be referred privately to a specialist and they agreed to refer me to a urologist, they wouldn’t refer on the NHS. I met privately with the urologist, he prescribed a two week course of antibiotics and I saw a very slight improvement but I still had constant UTI symptoms, other research suggested that antihistamines could help and so I started taking them and saw a tiny impact on my symptoms. I went back to the urologist and he felt that the antibiotics should have worked after a two week course and so didn’t believe it was an infection. At that point, he said I needed cystoscopy to check my bladder. I was terrified but agreed to it as I couldn’t see any other option and was desperate to stop these awful all consuming feelings. After my cystoscopy, I was told that everything was normal and he diagnosed me with painful bladder syndrome (PBS/IC). He prescribed me 10mg of amitriptyline, I went back after a couple of weeks with a very small improvement, that convinced him that I had PBS and I was told I had to learn to live with the symptoms and continue to take amitriptyline.
Thank goodness for my own research
In the meantime I had been doing my own research to find out how people learn to live with this awful condition and came across information on Professor Malone-Lee. It all made sense to me, all this time I had been convinced that I had an untreated UTI as I know my own body, but no one else would believe me, finding this information was a total turning point.
At my first appointment around 18 months ago, after lots of questions, he looked at my urine under the microscope and declared “you have a rip-roaring infection which I guarantee you have had for more than two years”. He was the first professional that believed me, didn’t tell me it was in my head and told me he would cure me. I was in tears and had some hope that at last, I could be cured.
I’m 100% better from when I first started treatment with a cUTI specialist
18 months on and I am a very different person, I’m not yet 100% but I am 100% better than I was when I first met Prof. I went from having symptoms 24/7, 365 days a year to no longer having daily or even weekly symptoms now, I have very occasional flares and sex is still an issue but the problems last about five days now, so they are much improved.
One thing that has really helped me during treatment is a traffic light system for how I feel:
- Red = can’t live with the symptoms
- Amber = if I had to I could live with the symptoms
- Green = normal and the majority of my days are now green days
I am very lucky that throughout this whole period my husband has been so very supportive, without him I wouldn’t be where I am today, being able to talk things through is a great help.
I am also so grateful for the Facebook support groups set up specifically for those with chronic UTI. Talking through things with people that really understand how you feel has been a lifeline. This illness makes you feel totally isolated and withdrawn so having a group of people who know exactly how you feel is important, you can call on their knowledge of symptoms and get reassurance that you are on the right path.
Finally, I would say don’t judge yourself against others progress, it really is an individual long term approach but you will see small improvements over time.
Stuck in a loop of ongoing symptoms?
- If your GP has been unsuccessful in helping you initially, find a practitioner who understands recurrent and persistent bladder infections. GPs are restricted by guidelines that don’t recognise these. Find a practitioner
- Read and research as much as possible, this website and others can help you understand more and look for support and treatment.
- Understand that your practitioner cannot be responsible for all elements of your treatment. It will require some changes from you. You alone are responsible for your own health.
- Involve family and friends in helping you to get well – speak out and be upfront, don’t hide away. You will need their support and encouragement. Educate them. Who knows, in the future, they or someone they know may need your help to treat a chronic UTI. Share our guide for family and friends.
- These infections are more common than you think and you can help others whilst you are in treatment. Support networks are out there. Read more here
- There may be an underlying cause as to why you have developed a persistent infection – if this is the case work with practitioners to help you.
- There are no short cuts in treatment, it will require a commitment from you and an understanding that this could take as long as is necessary to regain your health.
- Each sufferer is unique due to their circumstances, age, genetics and health load. Be realistic and recognise that quick fixes on social media or guarantees of “cures” because a treatment helped one person may not apply to you. Focus on your own unique health needs.