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.