01 Aug Christine’s Chronic UTI StoryReading Time: 8 minutes
Christine is a British woman whose recurrent UTIs started at the age of 12. Being prescribed the usual treatments, and offered routine UTI prevention tips and homeopathic remedies, her regular infections persisted. After complications brought on from successful breast cancer treatment, her recurring UTIs became worse and began dominating her life. Now out of options, Christine’s practitioner referred her to a specialist clinic for recalcitrant UTIs based in London. Here she was diagnosed immediately with a chronic UTI. Her severe embedded UTI has required several changes in antibiotic therapy to bring her symptoms under control. Now that her infection is being properly managed and she’s feeling better, she is cautiously optimist about completing treatment in the near future. You can read more about Christine’s story here.
It all started with a simple UTI
I had my first urine infection when I was 12. At the time I didn’t know what it was—it just hurt like hell! I was at boarding school and it was always preferable to keep any afflictions to oneself for fear of bullying—and a visit to the sickroom meant a confrontation with the very unsympathetic matron. I rode it out and after a few days it seemed to clear up. Sadly, and now I realise predictably, it returned with a vengeance. I caved in and visited the sick room and received a two-week course of antibiotics which sorted me out.
A few months later I had another bout of painful weeing and massive frequency. I was then sent off to the hospital for a kidney x-ray accompanied by the matron and a nine-year-old boy with similar symptoms. A kidney x-ray was quite a procedure at the time and was traumatic for both of us. The hospital was very concerned that we were both there without parents or suitable counselling! I was never informed of the outcome of the x-ray but assumed all was ok. I never knew if my parents were contacted and it was never discussed at home in the holidays.
Around this time, I started to show symptoms of what was later diagnosed as endometriosis. This was treated with complete disinterest and seen as a hysterical girl problem. I did not have another UTI until I was in my late teens. This was labelled as ‘honeymoon cystitis’ by my GP and I was told I would grow out of it. After several bouts treated by one-week courses of antibiotics, I had another kidney x-ray which showed no obvious problems. I experienced regular infections after sex with lots of pain and frequency. Miraculously, and eventually, I seemed to get over this prolonged episode after a two-week course of heavy duty antibiotics for a dental infection.
When I met my husband, my UTIs resurfaced with frequency and extreme pain. These were treated with one-week courses of antibiotics and lashings of bicarbonate of soda and lemon and barley water. They did subside after a couple of years and, despite my fears, I survived two pregnancies without any problems. Around this period I did start fertility treatment for my endometriosis and was on several trials at University College London Hospital. I was on Duphaston, which had some pretty nasty side effects. In the end I achieved two “waiting list” pregnancies which is not uncommon within the fertility treatment world while women await IVF treatment. The consultants were flabbergasted that it happened twice. A visit to the legendary Cerne Abbas Giant did the trick in the first instance!
My UTIs returned with vengeance in my mid-40s … and then things got complicated
I was completely well until I was 46 when my UTIs re-emerged. This time the symptoms were the same but accompanied by a very distinct smell. I took a week of antibiotics which cleared things up. This time the urine test did not show up an infection but my GP was prepared to prescribe.
I was now experiencing a lot of pelvic discomfort and I was referred to a gynaecologist for tests, including a urine test, which of course showed no infection. I was sent away with some information about homeopathic remedies and was told that a lot of women experience unexplained pelvic pain which had to be endured! My then consultant was a woman and I found her attitude shocking.
Chronic UTI is more than a 'cranberry juice and cotton knickers illness' that needs to be treated with dignity and serious science.
Two year later I was diagnosed with breast cancer and had the full monty of treatment—lumpectomy, chemo, radiotherapy, Herceptin, Tamoxifen and Arimidex. Interestingly, several of us in treatment got UTIs when we were on Herceptin—we were the first with primary HR2 diagnosis to receive it as the norm at the Whittington Hospital (London), and we were effectively on the front line of routine prescribing of Herceptin. We were concerned that there might have been a link between Herceptin and UTIs and tried to flag it up, but felt we weren’t listened to. As far as I know, there has never been an official link made between the two. A one-week course of antibiotics was prescribed for the UTIs. I then started to get UTIs more frequently, especially when I was taking Arimidex. Again, I was one of the first to receive this as a matter of course, and researching online, I could see there was an anxiety about a possible link with UTIs.
I gradually got bladder infections more and more frequently, often with negative urine test. The pattern was: a UTI, a week of antibiotics, a clear week, another UTI—it was very grim! I pointed out the frequency of the infections to my GP and I was referred to a urologist at the Whittington Hospital. I was lucky as my consultant was kind and sympathetic—and believed me! I had a cystoscopy, partly because my father had been just diagnosed with bladder cancer. You can imagine what was going through my mind! Nothing showed up and I went on a course of low dose antibiotics (prophylaxis) for nine months. Despite this, I started to get UTIs frequently and my pelvic pain was becoming more persistent.
I hit the jackpot and found a doctor who understood my UTIs
This is where I struck it lucky! My consultant at the Whittington Hospital said he didn’t know what to do with me, but he knew a specialist who did. I was referred to Professor Malone-Lee at the hospital’s LUTS Clinic.
I’ve been with Professor Malone-Lee now for over six years and have tried various combinations of antibiotics. I responded very quickly to treatment and made a lot of progress on Nitrofurantoin. The full-on infections had disappeared but I always felt there was a low-level infection simmering in the background. This was always confirmed by my cell counts. My cell counts dropped hugely at the beginning but got stuck and stayed at around the 20 mark. Sadly, I had to go off Nitrofurantoin due to a scare with my breathing (which turned out later to be linked with severe vitamin D deficiency, but there was no going back on it).
On the whole, my treatment has kept things at bay (barring a few massive flares), and I have been able to work and play most of the time.
During this time, I had a bust up with my GP who refused to prescribe my medication, saying it wasn’t necessary and she didn’t have time to read the Professor’s lengthy clinical letter. A few months later, after having met the Professor in person, she made a complete about turn, and she was willing to prescribe in moderation. By this time, I was regularly getting my medication straight from the clinic anyway.
Until I discovered the group, my treatment was a very lonely journey. My friends would glaze over when listening to my woes, and helpfully suggesting cranberry juice and cotton knickers. I now speak out loud and clear, without embarrassment.
I had a hiccup with my first time on Azithromycin and ended up having a colonoscopy because of some very alarming issues with my bowel. That was very disappointing as the combination was working well. I tried other combinations, which were never completely satisfactory. I yoyoed from one antibiotic to another with the infection increasing. Finally, I ended up giving the combination of Azithromycin and Cefalexin another chance. My daughter was about to go to Australia for a year and I really wanted her to leave behind a “well mum”, rather than the grumpy, poorly mum of recent months. I had some left-over medication and initially self-prescribed, and then with my specialist’s blessing. It worked with no side effects this time! Up until last year, I felt the infection was always simmering below the surface with a stinging in my urethra, pelvic pain and sometimes slightly increased frequency. But recently, I have days where I feel totally normal. After all this time we are now talking about coming off the antibiotics. I had had a couple of experimental attempts at the start of my treatment. These failed after about four weeks, so I’m cautiously optimistic about what might happen this time.
I found support through an online chronic UTI community
For about four years of my treatment, I was totally unaware of any support group of any description and often felt isolated and low. It was only when the clinic was suspended, that I found, in desperation, the Facebook groups which turned around my life. I was amazed that so many people suffered from the same symptoms and infections. And I was horrified that people suffered so much more.
Until I discovered the group, my treatment was a very lonely journey. My friends would glaze over when listening to my woes, and helpfully suggesting cranberry juice and cotton knickers. I now speak out loud and clear, without embarrassment. As a result, I have discovered sufferers in my social and work groups who are already patients of my specialist, and those who aren’t, should be.
I have never felt the need to go on a special diet, perhaps because my symptoms were rarely that dramatic when I was on medication. I did take cranberry tablets for a number of years, mistakenly believing that they were beneficial. I now take d-mannose at night as a maintenance measure and increase the dose if a flare looks likely. Swimming pools are a total no-go, as I have learned to my cost, as are perfumed soaps and shower gels.
When the clinic closed for a month, I spent my days in total panic trying hard not to imagine how my life would unfold. Things looked very grim. Now the future looks brighter and there seems to be a move to treating chronic UTIs with serious respect. I get frustrated that I can’t quite shake off this infection—so near yet so far. But I am ever hopeful that a solution will be found. The NHS (National Health Service) has done me proud with my breast cancer. Twelve years on I am well and thankful for being in the right hospital to receive some of the more cutting-edge treatments—even if the UTIs are a side effect.
I do feel I’ve been lucky with my treatment in so many cases. Perhaps living in London in proximity of world class teaching hospitals has made my journey easier. Curiously, my daughter has experienced almost the same pattern of symptoms as myself. When she was two and a half years old, she needed two different antibiotics to knock a UTI on the head. The GP initially said she just had a fever and no urine test was done. A UTI was only diagnosed when I took her back, still very unwell. She now suffers in much the same way as I did when I was young, even down to the endometriosis. She has been my rock throughout my illness and I hope she views me in the same way.
My tips for you
It is a long haul for some of us but don’t give up and don’t expect miracles to happen overnight. I often wonder if I might be on antibiotics for the rest of my life. This is a concern until I think of the alternative scenario. For me, it’s important not to dwell on the illness and try to enjoy life whenever possible. Chronic UTI is more than a ‘cranberry juice and cotton knickers illness’ that needs to be treated with dignity and serious science.