UTI Info Accordion Archive - Page 11 of 11

Five things you may not know about long term illness

It’s never nice being unwell. We can all be guilty of taking our health for granted, and only really thinking about it when it lets us down. But what do you do when a period of ill health turns into something more long term? Here’s five things you might not know about long term ill health:

1. Sometimes crap just happens

It is such a human instinct to want to try to understand the why when difficult things happen. We long to believe in a simple world where A causes B – and if we don’t like B then getting rid of A solves it. But we all need to accept the difficult truth that in our 21st century world there are complex illnesses, infections and diseases which are beyond our understanding and that can strike people almost at random – that do not follow this simple pattern or rule. Trying to understand why you or someone you love developed their illness? It is so tempting to try to put it down to something – working too hard, not eating the right things, something they did or didn’t do right. But the truth is, it may just be terrible bad luck.

This is very important not just for you if you are the person who is suffering – but if you are a friend or family member of someone who is unwell. Sometimes our psychology is so set on hanging on to that simple ‘A causes B’ illusion that we slip far too easily into believing things about someone who is unwell which basically protect us from the uncomfortable truth that such random misfortune could also strike us. It is easy to think of things that you would have done differently, or do differently to the person who is unwell – but that doesn’t mean this is why they got ill. Don’t fall into the trap of an over simple perspective on causality – long term illness is so much more complex than this.

Does this mean it could happen to you? In theory yes. That is tough to understand, difficult to get your head around and hard to tolerate – but don’t make the person who is already suffering the scapegoat for it.

2. An emotional or psychological impact of long term illness is often inevitable, but is not the fault of the person struggling, or (usually) the cause of the illness

If you are unwell yourself, hear this one thing above anything else you might read in this article: you are not at fault for finding this tough – it IS tough. Long term illness is often AWFUL, brutal, relentless, gruelling, exhausting and cruel. Nobody would be able to endure that without it having an emotional impact so don’t feel bad, or let anyone else make you feel bad for finding it hard.

All this means that many people do find that there are times when they really struggle alongside their illness, with their mental health. Emotions like anxiety and depression are common, especially when an illness has dramatically changed what everyday life looks like for you. This is not a sign of weakness – it is a sign of being human.

If you know you are in this place, get some support to help you deal with the emotional impact of what you are going through. This may be about professional support or just some safe people and spaces where you can express and share the awfulness of what is happening. Other approaches may help you manage stress and anxiety – explore things like mindfulness or relaxation, and don’t forget that it doesn’t need to be complex – anything that helps you feel something more positive is a good thing, so do as much of whatever that is as possible.

A word on the thorny issue of whether there can sometimes be psychological causes for unexplained physical symptoms. There are two situations when this can be the case: firstly when neurological symptoms are related to psychological responses – usually to historical trauma. This is rare, and probably rarer than most clinicians would like to think in my experience – but certainly possible (for more on this controversial but fascinating field I’d recommend the somewhat provocatively titled but thought provoking ‘It’s all in your head’ by Suzanne O’Sullivan).

The second, much more common situation is when long term stress, often related to emotions like anxiety and/or anger and frustration or unresolved trauma can result in physical symptoms because of the long term impact of raised stimulation of the physiological stress system (‘When The Body Says No: The Cost of Hidden Stress’ by Gabor Mate is a good exploration of this in more detail). Your body simply isn’t designed to cope with this kind of chronic raising of activity in this system and it can have real physical effects.

Please note however that neither of these are what I commonly hear from those fighting long term illness: when doctors are unable to explain the cause or understand the condition they fall back on lazy medicine and declare it ‘psychological’. This is bad medicine and bad psychology – and devastating to patients because it often signifies an excuse for doctors to stop looking for underlying causes, or to withdraw hope of treatments. Psychological causes cannot trigger physical signs and abnormalities, and the diagnosis of these rare psychological cases for physical symptoms requires that infective or other biological causes or abnormalities are ruled out first – so to persist with such diagnoses in the presence of abnormal tests (or as is so often the case inaccurate or unreliable testing) is simply not good enough.

It is very important that we don’t use psychology to try to explain the gaps in our medical knowledge. Many patents have been told their symptoms are psychological only to find a better doctor with more extensive experience or knowledge who then is able to treat and even cure often debilitating conditions. This means it is, as usual, the most vulnerable and least able to fight their own corner who often suffer the most due to this poor misunderstanding of the interlink between emotional and physical health.

3. Life is not black and white, neither or people and neither is health

Our culture loves good clear cut categories. People are either good or bad, successful or failures, heroes or villains. The problem is life is rarely like that, so to try to see the world in that way pushes people into unrealistic categories. This is particularly true when it comes to health and wellness. Increasingly we are encouraged to pursue a perfectionistic model of health and fitness chasing extremes. It isn’t good enough anymore to just run a bit for fitness – you should do marathons. If you ride, it is assumed you should move onto triathlons. Diet too has moved towards narrower and narrower aims, with extreme, so called ‘pure’ or strict diets the thing to pursue rather than the honest messiness of healthy normal eating.

The problem with these models is that only a small percentage of people can achieve the aim. The majority of people fall short – and in black and white models this can feel like failure. In health terms it means that we aim not just at reasonably well, but at a kind of super fit superhuman healthiness – and many of us find this just isn’t real life – particularly as we age. Most of all this means anyone who discovers that life comes with a long term struggle against background illness finds themselves outside of what is considered good living. Black and white attitudes to health can also lead us to ‘opt out’ if we feel the golden standard is unachievable, or doesn’t apply to us. And enabling the opportunity to make good steps to improve health – wherever you find yourself on the line at this moment – is important for us all.

We need to stop pursuing a perfection model of health and recognise none of us are either ‘well’ or ‘unwell’. Life is about a line with good health and one and end ill health at the other and we all move up and down at different times. The vast majority of us find ourselves in the grey somewhere – grateful for aspects of good health but managing other challenges. We must not forget those who are in seasons where they find themselves much further down the line than they would like to be. The more we champion a superhuman way of living – looking up to the apparently amazing people who seem super fit super healthy, super capable the more we damage and hurt people who are not right now feeling that great. And remember – what goes around comes around – it could be you next month needing the help, seeking support or feeling rubbish.

4. You are MORE than your illness (or your wellness)

In a culture that worships perfection, it is all too easy for our health, wellness and fitness to become intrinsically linked to our sense of identity. The temptation to build part or all of your self-concept on your ability to be well is strong – and the pursuit of extreme sports or dietary regimes can become very much a part of how people see themselves, not just their lifestyle. We see this demonstrated in celebrity culture where individuals publicise and recommend their own regimes as an opportunity to be more like them and (apparently) experience some of the extreme perfection they model. The problem is, this just isn’t real life! And more than that, if we celebrate and value people only for their superhuman perfection then we risk implying that we have no value if we are not able to achieve or pull off these amazing feats. People are worth what they are for things that are much more important – the people they are, the way that they love, the experiences we share – simple human values like friendship. And the real beauty of these things is expressed not in the triumphant clean, tidy moments – but in the times life gets messy and rough. As Martin Luther King said: “Only in the darkness can you see the stars”

There are perhaps no times when this is more important than when normal life becomes under the pressure of illness. Want to see true friendship? Look for the person who will still be with you at 4am in A&E, or who will answer the phone when you are blubbing too hard to speak, or bring you soup when you’ve not been able to get out of bed for a week. – that stuff isn’t as glossy as the nights out or the celebratory times, but it is where the most powerful and precious form of love and friendship is expressed. And the same is true of ourselves. Want to know who you really are and what really matters to you? We learn a lot when life is stripped down to its essentials. How do you not just survive but find a way to thrive when so much of your life is limited by your illness? Can you find contentment when there is so much to be discontented with – so much difficulty around you? Who really are you when the opportunity to perform and achieve has been cruelly removed from your grasp?

None of these are easy questions, and the exploration of them isn’t something most of us would choose. But it does mean that some of the people with the greatest depth of understanding of themselves, and their friendships, are those who have experienced long term illness. The challenge is brutal – but if you can find a way through it there is something beautiful to be discovered here. Think about the things your illness cannot steal and celebrate them – even if they can only be expressed in the tiniest terms. I remember a conversation with a doctor who specialised in the care of patents who had suffered extreme and debilitating injuries – often brain injuries – leaving them dependent on round the clock care. What he shared was that although we might expect these patients to have very poor quality of life, and perhaps even want to end their life, in face he found they had discovered unexpectedly the value and importance of life in those terms and the majority celebrated what they had and wanted to maintain it.

5. Recovery is a tough climb – and may not always be part of our journey

Just as illness and wellness isn’t black and white neither is recovery. But again our understanding of it can be simplistic. This particularly comes out for those who love someone who is unwell and so desperately want them to be well again. The constant questioning ‘how are you’ – ‘are you any better?’ etc. comes from a good place but reveals that desperate hope that this might be over. The risk is that for the person suffering this feels like a criticism – why aren’t you well yet? Haven’t you solved this yet? Small positives – a better day, or the massive work it takes to perhaps manage to attend part of an event like a wedding (which of course is probably followed by significant relapse which no one sees) trigger a gush of relief. ‘Its so good to see you looking so WELL!’ … ‘Wonderful to see you are doing so much BETTER’ etc. Again our human yearning for a simpler story comes through – we just want to know that at some point the magic trigger will be found that rescues you from your predicament and from then on recovery will be a smooth, upward journey – and preferably as quick as possible.

Of course the truth is that recovery is far from that straightforward journey. In face the ups and downs of the path can be emotionally brutal. Few things are harder than a relapse when you thought you were getting better – when you thought your days of pain were over. Hope snatched away is devastating to bear, and recovery almost always involves highs and lows, ups and downs, troughs and peaks just like this. And usually the visible moments are the triumphs, so it can be hard to know what to say about the times no one sees. How DO you answer that most tricky of questions ‘How are you?’ – it really isn’t a short answer!

Recovery may not even feel like it is part of your journey right now. Maybe it feels more like an adaptation to a new normal. Many illnesses or conditions are not ’curable’ – but modern medicine offers us the chance to live within those conditions and to explore new ways of thriving over what may be years. This requires so many difficult skills – learning to accept a new normal, grieving what you have lost, adapting to new abilities or situations, managing the ever present anxiety and the unpredictability of symptoms day to day. All of this takes great strength at a time we may well be the most exhausted – so even the strongest need help – and this may be professional, from psychologists or counsellors specialising in supporting those working through long term illness.

Let’s be real – long term illness sucks. But the most important thing to remember is that the absence of any illness at all is not a necessary requirement for happiness and good life. It is possible to learn to thrive in the grey areas, with our human brokenness an everyday part of our experience. But to do so will require a conscious rejection of so much of what our culture tells us about what good living really looks like and a deliberate celebration of things which are perhaps more subtle, more difficult to grasp and more rare to experience in all their true beauty. Let’s choose to seek out and to celebrate these things: the beauty of potential within pain, of friendship in the midst of fear and trust and commitment in unpredictable or challenging of times. The small wonders of being alive – beauty in creation, pleasure and contentment even when it is fleeting and the gift of real human connection when we get to experience it. And let’s not lose the voice of people who due to the most difficult of circumstances have a unique and valuable perspective on all these things to share.

Five things you can do to win back ground from a chronic illness

Chronic illness can be brutal to bear. And in the face of something which can be so dominating in your mind and your physical body, how do you stop it from taking over? Is there a way to avoid it stealing – not just from you but from those you love?

Here are five tips, whether for you or for someone you love:

1. Pursue joy

This is an oh-so-easily-forgotten part of mental wellness and emotional health. When life hits rough phases we can become so consumed by the difficult and dark that we forget about the little glints of light and life that still exist in our world. It’s one of the perennial problems of difficult things: the evil and nasty shouts for our attention: pain, hurt and loss. It demands our focus, refuses to let up, dominates our world. The good things of life are much more gentle: love, laughter, the gentle warmth of sun on a nice day. It is so easy to miss or pass by the good things when our minds are full of the difficult, or to just become too exhausted to make space for things that bring us joy. Try not to miss them.

Did you know your brain has a negative bias? We are hard wired to focus more on negative things – experiences, memories, comments … It makes sense that these are the things we perhaps need to make sure we do not miss so that we don’t repeat our mistakes – but it can make the world feel much worse than it is – especially in seasons when negative or difficult things feel hugely dominant. Another nasty trick our minds can play on us is that when we are feeling a strong emotion or physical sensation like pain – or when in a powerful context or situation (in hospital, for eg), it becomes much easier to remember any other times you have experienced the same thing, or been in the same context. So the very moment you need to remember that life does have brighter times, or reflect on times you were not in the situation you are in now, your brain brings to the surface everything you don’t want to think about. It can feel like that is all your life contains – but it isn’t true.

In order to balance this negative bias we need to make intentional and deliberate decisions and actions to reflect upon and recognise good stuff. Psychologists talk about the art of ‘savouring’ – pausing and making sure we do not miss good moments in life. I like to think of it like squeezing an orange – you want to make sure you get every last bit of juice out of it. Or when my kids lick out an icing bowl – they don’t do this halfheartedly – they recognise something good and pleasurable there so they linger on it and scrape every last bit out.

How could you give more headspace to the good things today might bring? How much might it change your life if you spent as long reflecting on and giving headspace to those good things as you do worrying about or dominated by the bad? It could be a small thing: a moment of laughter, a text from a friend, something beautiful or special. Like a hug, for example – did you know that a hug can trigger the release of the comfort hormone oxytocin? But this great gift of feel good warmth only happens if we linger in the hug for at least 15-30 seconds. So often we hug fleetingly – why not linger in the next one? Even count it?! (or if the person hugging you can be heard muttering numbers under their breath now you know why!!).

2. Connect

Did you know that built into the basic DNA of all human beings is the need to connect. The ancient Genesis story about how humans were created lists all the things God made and though were ‘good’ – but there’s one thing that is ‘not good’ – and it is the observation that the newly created human is ‘alone’. The ancient Hebrew word used here actually means ‘disconnected’ – and the story continues of course with the creation of other humans for company. Whether you believe this story is a literal truth or mythology – it teaches something important about people: we need other people to be well. And our 21st century medical understanding of just how important human connection is for us is only just catching up as we recognise the challenges of an epidemic of loneliness. But when you are unwell, perhaps confined to your house or even to bed, maintaining meaningful connection with others is very hard.

It’s worth taking time to think about – and with the key people, chat about – how you can work around this challenge and do what you can to stay in touch. The great thing about our 21st century culture is that we can use all the benefits of mobile comms – texting, social media, video calls. So – be creative! Think about what you can do and take little steps to keep in touch. It is so easy to give up when the kind of contact you long for is not possible – but you don’t need to settle for nothing. Remember connection is lifeline – even if it is far less than you’d like.

Meanwhile, if you are caring for someone who is long term unwell, the most important thing is to not forget to stay in touch. You may not want to disturb them when they are resting but remember the forms of communication which enable them to respond as and when they are able. And be open to messages that don’t even need a reply if someone is not up to it – reach out purely for the power and purpose of connection and not necessarily expecting or needing a reply. But most of all, human, real life, ‘in the flesh’ connection cannot be beaten. Even if you pop over literally just to deliver a hug (remember, count to 15!!) and leave again, or to drop off flowers or a card that visit is far – FAR from wasted.

3. Call out anxiety, grief and frustration

These three horsemen of the emotional apocalypse unfortunately are the most difficult to manage – and unfortunately are commonly – and understandably – triggered by long term illness. They also share the same physiological pathway as stress and pain, harnessing the same combination of systems. Emotions like these are triggered when your brain detects something going on in your world which might be significant – eg a risk of something bad happening or a goal or value you aim to live by being blocked or at risk. The emotion is triggered for three main functions: First of all emotions like these grab your attention – to make sure you focus on things you might need to do something about. Our experience of the physiological change they trigger is not pleasant – and this is deliberate. It is why anxiety in particular (which warns us of a potentially bad outcome) is so hard to ignore. Secondly, these emotions set us up in case we need to act or react – that well known fight or flight response. And thirdly, they trigger the analytical part of our brain to determine whether we do need to act or react – do we need to do something?ˆ Once we’ve decided this, in the ideal circumstance the emotion has done its job and therefore burns out – a bit like a flame burning down a match.

Of course the problem is emotions can feel a lot less constructive and a lot more powerful than this. Where long term illness is concerned there are a variety of reasons. Challenges with emotions can be about the number of them triggered – like lots of matches being struck if your mind is alerting you to lots of things that are potentially significant you may find yourself hit with a barrage of negative emotion that feels relentless. Then there is the kind of analysis that is triggered in your thinking brain. Some of this is constructive and helpful, but in difficult times and situations thoughts are triggered which are much less easy to manage. These thoughts may trigger further difficult emotions, or simply be things difficult to resolve. Or the emotion may draw your attention to things which are indeed significant and painful, but about which you can do little or nothing. The difficult truth about long term illness is there may well be little or nothing you can do about most things your emotions alert you to – and this is a big challenge.

Emotions like these can feel less like little matches and more like they have set fire to much bigger emotional bonfires which can flare up very powerfully, or smoulder in the background. These emotions are difficult and painful – and we often instinctively try to ignore or suppress them – but their job is to get our attention, so they do need to be processed. The constant triggering of them raises our stress level – which may already be heightened by practical things like hospital appointments and medical tests etc. or physiological triggers like pain.

In fact because they share the same physiological system, if your baseline stress has been raised, you can find yourself a lot more emotion than you usually would be. Think of the system on a 0-10 scale – if your baseline is already at 7, a 1 point raise on that scale pushes you into the upper end of the scale. Whereas normally these small things wouldn’t affect you, when you are unwell they can feel overwhelming. And there’s a final sting in the tail of such emotions. When our level on that scale is pushed into the 8-10 zone, we’re really in a kind of ‘worst case scenario’ area where your brain detects that you may need to not analyse but just react and get yourself out of danger. This means it literally starts to turn down your thinking brain, or bypass it, with physiological responses so strong you react first and ask questions later. This can leave us in a situation where we face blinding panic, frustration that makes us lose it or just depression, sadness and grief that we cannot see any way out of because our creativity is so limited by our emotion.

So – find yourself emotionally floored at the end of a long pain filled day by a tiny challenge? Drop a cup and feel like your world has shattered? You’re not over-reacting – your emotional system is just overloaded. Resist the temptation to add guilt to what you are feeling and to beat yourself up for it. Long term illness is brutal. Your life has probably been transformed and your days may sometimes be filled with challenges. Find safe spaces you can process and express these emotions, and get help with dealing with them. Psychological approaches to long term pain often offer some support in this, and counsellors experienced in supporting those suffering chronic illness can also help. Or it might just be a good friend you can trust enough to allow yourself to be honest, and who will hold those feelings with you. Remember – you don’t need to fix things to help – just being able to express, be honest and for a short time admit to yourself and another human how rubbish this is will help. Hold out your emotions and let them be without any pressure to somehow change things.

4. Manage pain

This is a tricky one because the effective management of pain is a complex art – and one we’re really only just beginning to understand. But it really does matter. So many people approach pain like it is a test of their basic emotional guts – can you ‘take’ it? Where’s your pain threshold? But our response and reaction to pain is moderated by how we are feeling in other ways: how tired we are, how emotionally worn we are, how well supported we feel, how much fear or uncertainty we feel. And our management of pain needs to take those things into account too. It is so much more than just throwing some medications at it – and in fact studies show most pain medications are a lot less effective than we would like them to be.

Pain is really important in your longterm wellbeing, triggering your physiological stress system (increasing the level of difficult emotions – see 3) and interrupting other vital coping mechanisms like sleep (see 5). Do what you can to manage pain effectively – rather than waiting until it becomes unbearable before taking medication try to take them consistently to create a good blanket over the pain, keeping it at bay. Watch out for breakthrough pain that might indicate it is not as well controlled as it should be. But do not restrict yourself to medication. If you have not yet had a referral to a good pain management clinic, ask for one. Remember – being referred to a psychologist for pain does not mean that people think your pain is all in your mind – it is about exploring the way your mind and brain respond to and moderate your experience of pain and teaching approaches which can make the pain feel less overwhelming and unbearable. Give it a try.

5. Prioritise sleep and rest

I know, you feel guilty. And bored. And frustrated. You’ve done nothing but rest for SO long, you think you might actually go crazy. But when you are unwell rest is important. In fact it may be the most important thing you do each day right now. So often we feel guilty foresting or view it as ‘wasted’ time. But rest – and sleep in particular – are part of your body’s toolkit to respond to illness and recuperate and recover – so do what you can to do them well.

Don’t be afraid to explore whatever approaches you can to help you sleep and rest better. If you need better pain management ask for it – if additional pillows or a different mattress might help, it is worth the investment. If sleeping in a operate bed to a partner so you can move around and not be disturbed or worry about disturbing them helps, do it – even if you only sleep separately a few nights a week that can make a lot of difference. If we don’t rest and sleep well and valiantly try to go on, forcing ourselves to endure life in a semi-conscious haze of sleepiness, we can become caught in a cycle of never sleeping well, dozing through our days and nights and never getting the best of either. You may not be able to sleep as well as you’d love to – but little steps to improve your sleep and rest patterns may make a bigger difference than you think.

Be careful about the temptation to monitor sleep or use apps to measure how well you are sleeping. There is very little research to show ANY beneficial impact of this, and there is plenty that shows monitoring sleep can mean you sleep less well. In fact anything that draws attention to sleep, or makes you think too much about it can make it more difficult. Research also tells us that our perception of sleep quality is very significant. Studies that manipulate the data on sleep apps to tell people they are either sleeping very well or not very well (irrespective of how they actually slept) demonstrate that people feel worse if they think they slept poorly. Ask yourself: what am I gaining by measuring this? And be cautious.

Once your sleep is disturbed and you become anxious about it it is all too easy to get into difficult cycles and patterns around sleep. If this is you it may help to listen to my sleep talk at the Thrive Talks link listed below.

Steal back ground …

Chronic or long term illness is an immense challenge, a cruel surprise and an unwelcome intruder on family, friends and life. You may not be able to make yourself well right now – but there are small things you can do to try to steal back some ground and stop it from taking over entirely.

You can find out more about how to manage anxiety, stress and sleep as well as other topics, in these talks from a series I gave about how to manage common wellbeing challenges called Thrive

I’ll leave the final words to a quote I love – from a book by a guy called Tim Keller talking about the challenge of suffering – and I think it sums up perfectly how we need to respond to long term illness:

“We are to meet and move through suffering without shock and surprise, without denial of our sorrow or weakness, without resentment or paralysing fear, yet also without acquiescence or capitulation, without surrender or despair.”

Dr Kate Middleton is a psychologist, Director of the Mind and Soul Foundation and church leader at Zeo Church Hertfordshire. Her passion is applying psychology to real life, enabling people to reach their full potential and not just survive but thrive in life and leadership.

What treatments are available to help with pain, lack of sleep and discomfort?

Cetirizine and Ranitidine can be purchased over the counter. These are commonly sold as allergy/antihistamine tablets but they work on the H1 and H2 pain receptors in the bladder and can help reduce inflammation and pain. Prescription-strength anti-histamines can be prescribed – discuss with your practitioner which is appropriate to manage bladder pain.

Amitriptyline, Nortriptyline or Dosulepin are other options often prescribed to those with bladder pain. These are anti-depressants which have been found to help with nerve pain in the body including the bladder, aid sleep and can be prescribed by a consultant or your doctor. They should always be taken at night as drowsiness is a side effect. Increasing or decreasing the dosage of an antidepressant should always be discussed with your specialist or GP as side effects are common and should be managed appropriately. Your pharmacist can also provide advice around the day to day use of these medications.

Always discuss any other medication taken for other medical conditions with your GP or consultant as certain medications do have significant interactions with types of antidepressants. This particularly applies if you are already prescribed anti-depressants to manage issues such as anxiety.

Alternatively, 5 HTP is a natural product containing serotonin and will help with mood and sleep. Again check with your doctor, complementary practitioner or the manufacturer as natural medications can impact with prescribed allopathic medications with significant side effects.

My life is a complete turnaround –

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.

P45

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!

Find out about UK specialists in Chronic UTI

How to manage flares

Thank goodness I found two specialists that were able to help me because they understood my chronic UTI –

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.

Find out about UK specialists in chronic UTI

Find out where to get a urine sample tested

I can live a normal, pain-free life –

Carolyn’s story

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

No infection found by GPs

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

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

The urologist’s diagnosis and treatment

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

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

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

My next steps

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

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

Find out more about support

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

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

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

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

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

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

Read Carolyn’s interview in the Daily Mail

A bumpy journey

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

What else helped?

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

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

A breakthrough

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

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

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

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

Advice for this journey to recovery

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

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

Find contact information for UK Chronic UTI Specialists

Emma’s story

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

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

From cystitis to a chronic infection

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

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

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 –

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.

Why don’t the current tests and treatment for a UTI work?

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.

In April of 2020 I managed to get a job at Guide Dogs for the Blind as an advice line coordinator for children and young people. This was originally meant to be in the office but due to coronavirus it has been remote working. I started part time doing three days a week and was terrified I wouldn’t cope. I managed fine and increased my hours to full time after Christmas and was given a permanent working from home contract which was ideal for me.

In January 2021, after 9 months in the organisation (this was my first ever job because of this condition holding me back), I was promoted to a supervisor role which is also permanently working from home and I am now earning a good wage after being used to claiming sickness benefits my entire adult life and I am working in the comfort of my own home. Something I thought was going to be impossible for me to attain as prior to my counselling course I had no experience and no qualifications past my a levels.

I have been terrified at every step I took as to if I could cope, but I surprised myself and I finally got where I need to be. I still have chronic uti and am not 100% cured but I have now finally taken everything back that it took from me. Chronic uti doesn’t have to stop you from being successful. I had so many years spent in fear worrying about my future and how I would ever get anywhere. I took baby steps and I am finally where I aimed to be after two years of hard work and adding a little bit at a time.

I hope this gives someone hope, as this was something I worried about so much up until I got my first job last year. Never ever give up because things will get better, i promise! If they did for me they can for anyone.

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.

Find a UK Chronic UTI specialist

It is so lovely to be able to commit to games again and know that I will be well enough to play –

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.

Find out about UK specialists in chronic UTI

I believe treating the bladder in isolation is pointless – there is a reason you ended up with a chronic bladder infection –

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.

Find out about UK specialists in chronic UTI

18 months on and I am a very different person, I’m not yet 100% but I am 100% better than I was –

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.

Find out about UK specialists in chronic UTI

Where to get support