While on summer holidays, a simple UTI was the start of a horrid year of illness, pain and anxiety for British woman, Clare.  Short-courses of antibiotics quickly cleared her UTI symptoms, but they returned each time.  Repeat dipsticks and culture tests confused her doctors because they were unable to confirm an infection was present.  Being a nurse practitioner and understanding her symptoms and her own body, she knew an infection was what she was dealing with.  Clare was referred through the healthcare system, had the usual tests and was offered many of the standard treatments for managing her symptoms.  Before embarking on this route, she found a specialist with the expert knowledge to diagnose her condition and treat the infection that had become embedded in her bladder.  This is Clare’s story.

A UTI was the beginning of my living nightmare

I am really happy to share my story as other people’s have really helped me and given me hope in the darkest times of this disease.

I’m 52, was fit, like really fit and healthy, running doing triathlons, living life.  This was until April 2017, when I had the first UTI that triggered this whole thing.

When I was younger I did suffer from UTIs sporadically but they were acute and cleared up with a course of antibiotics. I had one in 2015 but that seemed to clear. The one that started the problem occurred whilst I was on holiday in April 2017. On my last day I felt really tired, I had a headache and kept going to the loo for a wee. In all honesty, I didn’t think much about it and put it  down to too much wine and sun. When I got home, I still felt a bit unwell and shivery for a few days but my urinary symptoms weren’t so bad.

I’m an Advanced Nurse Practitioner and it suddenly dawned on me that it was, in fact, a UTI. I went to my GP who did the usual dipstick and sent my wee away for culture. Surprise, surprise—nothing showed on the dipstick and nothing was grown on culture. My GP did, under protest, give me a very short course of antibiotics.  This did the trick, until it came back two weeks later.

I went to my GP who did the usual dipstick test and sent my wee away for culture. Surprise, surprise—nothing showed on the dipstick and nothing was grown on culture.

More antibiotics and my UTI kept coming back

I went back to my GP.  The GP went through the same routine and told me there was no infection, but he gave me another course of the same antibiotic—this time for a week instead of three days. I went through the same pattern for the next few months, until one of the GPs in the practice put me on a low-dose antibiotic for three months.  They told me it was due to my age and the fact I had had a total hysterectomy 10 years previously, so had undergone an immediate menopause.

I was symptom free for about three months and then it came back with a vengeance!  It was like the worst flu, with lots of weeing but no actual urinary pain. I had rigors but no temperature, I felt so nauseous I was unable to eat (very unusual) and I just couldn’t get out of bed. At night when I closed my eyes I was hallucinating.  Every time I dropped off to sleep, I was woken up by these horrendous visions. At this point I was seeing a local consultant urologist, who was very nice but not very proactive. She prescribed broad spectrum antibiotics.  This seemed to clear my symptoms for another few weeks and she then advised a cystoscopy. Following the cystoscopy I was told there were signs of metaplasia—but this was not significant and there was nothing to be concerned about. I now know this is a common sign of infection and inflammation.

After the cystoscopy I became really unwell and ended up in A&E. I presented at A&E with rigors, a very low temperature (which can be a sign of sepsis), nausea and lower back pain. However, nothing showed on the dipstick! I think they thought I was having a panic attack and there really wasn’t anything wrong with me! So I was sent home like an ‘over-anxious, middle-aged, menopausal women’.

I searched and found a specialist who was able to diagnose and treat my condition

The urologist I was seeing was offering vaccines, bladder instillations and Hiprex. By this time I had started to do my own research and came across Professor Malone-Lee’s work. I discussed it with my urologist who had heard of him but not his treatment. Luckily, I had private insurance which paid for the initial consultation, but refused to pay for anything further.  This was because his treatment involving long-term antibiotics is not NICE approved! I did try and point out there were no guidelines, as yet, for the treatment of chronic UTI. At this point I would have sold all my worldly goods and my soul to get rid of this disease! It had been a year by now and I had stopped working, stopped going out and stopped doing exercise.  It seemed every time I stressed my body I became ill.

Initially I started on one narrow spectrum antibiotic and Hiprex.  I responded well but I was getting flares every two to three weeks, some of which were awful and usually occurred if I went somewhere new or a few days’ holiday. So, I stopped doing that after a long weekend in Mallorca, that lasted only 24 hours before I had to come home due to developing violent shakes during the night—I thought I was about to die!!

I then had two subsequent flares that were so bad I just couldn’t get out of bed. One of these coincided with my 17-year-old daughter starting at boarding school. I loaded up with every legal drug I could think of and off we went. The downside was I crashed horrendously for about two weeks following that. Unfortunately Professor Malone-Lee was on leave at this point, so I went to my GP who told me to start a different antibiotic and stop the one I was on. After reading other people’s blogs and the Professor’s papers, I made a clinical judgement to continue with the original antibiotic and add the additional one, which The Professor agreed with on his return.

At this point I would have sold all my worldly goods and my soul to get rid of this disease!   It had been a year by now and I had stopped working, stopped going out and stopped doing exercise.

This still didn’t stop the flares, although they became less intense and he advised titrating the dose accordingly. As they had become less debilitating, I decided I would try and go back to work.  This was largely fine but meant I pushed myself to go to work even when I felt unwell. I then saw the Prof for a follow-up appointment which coincidentally followed a flare. He was really pleased with the progress as he saw a lot of epithelial cells but no infection.  This was obviously a good sign and indicated that the infected bladder cells were shedding but the bacteria were not surviving. However, he did increase my antibiotics, which he said is normal towards the end of the disease.

I am now on a pretty huge dose.  If I get the slightest flare I increase to the maximum under the Prof’s advice. I have been back at work full time for 12 weeks with no sick days and quite often my days are long and stressful. I am still not able to exercise as this precipitates a flare.  By the weekend I am tired and sometimes don’t do very much, but I am getting better. A flare is not nearly as bad but I still get them.  Apparently this is the normal pattern of progress but still feels like I will never be truly rid of this demonic disease. The Professor is very positive and has said this can be cured, which is great for me and I hope brings a bit of hope for other women going through the same thing. However, sometimes I do wonder…

My tips on how to get through the dark days with a chronic UTI

I have thought long and hard about triggers.  To be honest, there doesn’t appear to be anything specific for me except getting overly tired. I also have chronic fatigue syndrome, so I think this added to my problems. When I read this it sounds quite mild, but I can honestly say it has been like going to hell and back. I have never felt so ill. I didn’t have a lot of bladder pain, thankfully! It was sore but not horrendous.  I was just so ill!

I have spent a lot of time in my darkest days reading other people’s experiences which are so similar to mine and made me feel like I was not the only one experiencing this. They also gave me hope that I would recover. I really would like people who are in the same place I was, to read this and realise you will get better. I was so ill at times I just couldn’t get out of bed for days. I had rigors and sweats and thought I was dying—I’m a nurse, we are terrible hypochondriacs!

I have been back at work full time for 12 weeks with no sick days and quite often my days are long and stressful. I am still not able to exercise as this precipitates a flare.  By the weekend I am tired and sometimes don’t do very much, but I am getting better.

All I can say is go with it when it’s bad, look after yourself and avoid triggers if there are any. I haven’t drunk coffee or alcohol for months and sex of course is out of the question. Watch lots of Netflix and do lots of online shopping when you feel a bit better! And most importantly don’t despair, you can get better.

Professor Malone Lee and his team are amazing. He is obviously a genius but his whole team are so helpful and efficient. Don’t let anyone put you off this course of treatment, which they will because of all the issues with antibiotic resistance. I have tried to educate people along the way, mainly my GP practice who clearly don’t want to learn from a patient, which is a shame. I am sure there are lots of GPs in the UK and elsewhere who will embrace this though.