03 Aug Áine’s Chronic UTI StoryReading Time: 12 minutes
Áine started experiencing recurrent urinary tract infections (UTIs) at the age of 12. As she grew older, her recurrent UTIs became more frequent. She always responded to antibiotic treatment, but sometimes she would need a repeat course to fully clear her symptoms. In her early 30s, she came down with UTI that didn’t clear up with the usual treatment. After a year of suffering persistent and painful UTI symptoms, she was diagnosed with interstitial cystitis (IC) and advised to try and manage her symptoms through diet changes. Another year on, Áine discovered her diagnosis had been wrong and was diagnosed with a chronic UTI and endometriosis. After being prescribed appropriate antibiotic treatment targeting her embedded infection, and having a laparoscopic excision of the endometriosis, she fully recovered in 12 months.
My recurrent UTIs started at the age of 12
I’m 37 years old and I’m from Northern Ireland. I had my first urinary tract infection (UTI) when I was around 12 years old. After that, I would get them maybe once every year or two back then. I remember feeling different from anyone else my age because I was getting UTIs more than anyone else I knew.
This continued all through my school years and into my adult life. As an adult, I was getting UTIs more frequently than anyone I spoke to—from friends to work colleagues. I knew if this wasn’t normal for other people, this was my normal. But I realised there was something wrong with having UTIs all the time. I asked doctors why I was getting them and they would fob me off with something ridiculous. The doctors were never really helpful. They were happy to give me short courses of antibiotics for three to five days, the odd time I’d get a seven-day course. If my infection was really bad, I’d get a follow-up course of another seven days, so about two weeks’ in total. I always asked why I kept getting these infections and could we get to the bottom of it. The doctors were never interested in helping me with this.
Short-course antibiotics stopped working and my UTI wouldn’t clear
Fast forward to four years ago in January 2015. I had just broken up with my long-term fiancé of six years. I had moved back into my parents’ home again. I was severely stressed out and in a bad place, mentally. I was working as a care worker in the community looking after elderly people in their own homes. It was a tough job. I took a UTI that was pretty bad. Usually a seven-day course of antibiotics, or sometimes with a repeat seven-day course, would do the trick. But after the two-week treatment, it was slightly better, but not much. It was still there.
For the next three weeks, on my good days I felt the symptoms lingering in the background. When I had a bad day, I had to take off work. I had developed pelvic pain, urinary urgency and a feeling of bladder pressure that made me want to go to the toilet, but I only had small amounts passing when I did go, followed by severe burning. When I was bad, I would sometimes see traces of blood when I wiped.
A pattern developed over the next three years. I would feel the symptoms coming on, so I would go to the treatment room in the doctors’ surgery. They would test my urine and there would be a 50/50 chance if the dipstick showed up anything. Most of the time it would be negative. They would send me home saying it was cystitis, not an infection. I would get worse and worse, so I would go back three days later. Then everything would show up on the dipstick to indicate there was an infection, including blood. I would be issued antibiotics for maybe seven days. If it was still there after that week, they would give me another course of antibiotics for five to seven days. It became common that after I finished the antibiotics, around three to five weeks later I would get bad UTI symptoms all over again. And this cycle continued.
I took a UTI that was pretty bad. Usually a seven-day course of antibiotics, or sometimes with a repeat seven-day course, would do the trick. But after the two-week treatment, it was slightly better, but not much. It was still there.
After two investigative cystoscopies I was diagnosed with interstitial cystitis (IC)
I decided enough was enough. At the end of December 2015, I asked to be referred to a urologist. I saw the first urologist consultant in February 2016. He brought me in for a cystoscopy (where they insert a small camera into your bladder through your urethra). I was awake for this procedure. It was very uncomfortable. He said my bladder was good and healthy and appeared to be nice and pink. He told me to look at the screen myself. I looked and it did look healthy to me, too. When I went home I was very upset. If the doctors said there was nothing wrong with me, why was I feeling so bad with bladder symptoms every day for the past year? This wasn’t normal. I felt I was let down by the system. I know my own body and I knew something wasn’t right, even if the doctor told me everything was ok.
I went back to my GP and asked to be referred to another consultant for a second opinion. In May 2016 I went to see one of the best urologists in my local hospital. By this stage, I was working in a hospital and this doctor came highly recommended by an auxiliary nurse I worked with. I thought this was going to be great—he’s the best around, maybe he can fix me.
I continued to work despite my constant symptoms. Some days were worse than others. I did miss quite a few days of work being sick when my bladder was especially bad. I went to see the new urologist and he wanted to perform another cystoscopy because he needed to see inside my bladder for himself. I agreed. This time the procedure would be performed under a general anaesthetic. I thought this was strange because the last time I was awake. He said we may have to do a bladder stretch (hydrodistension) because I had told him when my symptoms were bad, I could only empty a little at a time in the toilet. But I was able to go to the toilet normally, with a good flow, when I was having good days. So, I didn’t know why he was going to stretch my bladder. At this point I was unsure what the procedure was. Like I said before, he was considered the best urologist in the area, so I trusted his knowledge and experience.
I went into hospital this time for a procedure—not to go to work. After the procedure, I was back in the ward and I was in pain. It took me a few hours before I could urinate. When I did, it was hell. I was literally screaming when I passed urine for the first time. There was blood, which I was told was to be expected. My consultant came back to see me that afternoon and said I had interstitial cystitis (IC). He handed me a print-out of the foods and drinks I couldn’t have and he discharged me.
Over the next few days to a week, I felt very down. I was still in a lot of pain. I was trying to get my head around my this. The more research I did, the more my story didn’t add up to the IC diagnosis he’d given me. Some of my symptoms were similar, but I had seen inside my bladder on the first screen and it looked healthy. How could I have IC? I started joining online IC support groups to compare stories and ask for advice. It took me four months before I started to feel a bit better after the second cystoscopy. That procedure had made my symptoms far worse.
My consultant came back to see me that afternoon and said I had interstitial cystitis (IC). He handed me a print-out of the foods and drinks I couldn’t have and he discharged me.
I learned about chronic UTI in an IC support group
I was approached by a lady in one of the IC groups. She told me about a professor in London who specialised in urinary tract infections and other bladder related symptoms. She said a lot of people she knew had been misdiagnosed with IC when what they had turned out to be an embedded bladder infection. So, I joined one of the online chronic UTI groups and I read other people’s stories. The more I read these stories, it validated to me that they sounded just like me. It was like reading my own story. The typical IC symptoms didn’t fit with me, but the embedded UTI symptoms did. This spurred me on. I knew I was on the right path now.
There was one problem though. In December 2016, I injured my back. I didn’t know what I had done, but I knew it was serious. I was doing big shifts at work and my body was still battling the chronic UTI. I was also doing HiiT training at the gym, which was intense. I found out in May 2017, after a private MRI scan, that I had a bulging disc and sciatica. My job was very physical, so I had to give that up. So now my problem was I had no income. How could I travel to London to see the professor? I waited for some benefits to come in and eventually I saw him in March 2018.
Endometriosis was also part of my puzzle
In Feb 2018, about 3 weeks before my appointment with the Professor, I had been feeling unwell with other symptoms and I didn’t know what it was. My periods had stopped for two years. I’d had a coil removed and just assumed it took time for my cycle come back again, so I didn’t think anything was wrong. But other symptoms started, and they got worse over the last year. I had severe abdominal bloating, nausea, reflux so I was bringing up my food, dull abdominal pain and the odd time where it was severe abdominal pain to the point I couldn’t move, but that only last for half an hour at most.
I had pelvic pain and the bladder issues were still bad. And little did I know that symptoms from different illnesses can overlap. So, you can have the same symptoms, but you could have two or three different conditions going on at the same time. This is what was going on with me but at the time I didn’t know it.
I explained my symptoms to a friend. She thought it sounded like endometriosis because she had been diagnosed with it and had surgery years before. I had never even heard of it before. I had to Google it later that night. And when I read the symptoms, I had most of them. I booked an app with my doctors and she examined me. She didn’t think I had endometriosis but agreed to refer me to a specialist. I decided to see the specialist under my private health insurance and so I was seen to pretty quickly. I saw the specialist in the first week of February and my surgery was scheduled in five days’ time. When I woke after the procedure, he said I had endometriosis on my bladder and that I had adhesions on my bowel. He’d been able to remove it all. Three weeks later I had my first appointment with the UTI specialist (Professor Malone-Lee).
I have other issues, like irritable bowel syndrome (IBS) and intolerance to certain foods. Plus, I had gained well over a stone from being off work and not being able to exercise. If some of the tips I had read about in the IC groups helped my bladder while I waited for my appointment, it would be a bonus. So, I cut out caffeine and switched to decaf tea. I switched from tap water to bottled water and I never had alcohol. I had given up alcohol in May 2016 because it was one of my biggest triggers and would flare me badly. I also gave up fizzy drinks and fruit juices, as these were all bladder triggers. All these changes made a difference to my symptoms, so I guess I was bladder sensitive where other people weren’t.
Going to London was the best decision I made and the start of something good
Looking back now, all I can say is travelling to London to see the professor was money well spent! This was the start of something good to happen to me in over three years. I felt just seeing him had me on the right path. He put my urine under a microscope in his office and he said I had a “rip roaring infection”. I laughed at his way with words. This was also a relief. Finally, someone who knows what they are talking about. I always believed I had an infection because I always responded to antibiotics when I was given them. If I had IC, I wouldn’t have responded that way.
The Professor told me the reason for the pattern of getting UTI symptoms every three to five weeks was because the antibiotics kept the UTI at bay, and when they started to leave my system, the UTI would rear its head again, every time. It made sense. He also said I probably had the same UTI all along and it wasn’t multiple new infections. He said I didn’t need all those invasive procedures I’d been given. This made me angry with my health service for putting me through this. I had been suffering from a chronic UTI for three years by the time I finally saw Professor Malone-Lee. At last, I had a proper diagnosis and I was being prescribed the right treatment for what I had.
Even though my symptoms had improved from changes to my diet before seeing the Professor, his tests showed I still had a bad bladder infection despite feeling a bit better. He said I was probably between flares at that time and having a ‘quiet’ period. I was started on full-dose Cefalexin, plus Hiprex (methenamine hippurate) twice a day. I felt better just two weeks into treatment and was pretty much like that for the full year. In the following March I had a couple of minor flares where I felt twinges, but it only lasted about an hour or so. In addition to my treatment, I would take bi-carb soda in water and two strong pain killers and the symptoms went away.
The professor told me the reason for the pattern of getting UTI symptoms every three to five weeks was because the antibiotics kept the UTI at bay, and when they started to leave my system, the UTI would rear its head again, every time. It made sense.
During my treatment with the Professor, I went to see another UTI specialist in November 2018. I was curious for a second opinion because I was reluctant to be on long-term antibiotics and I’d heard the other specialist prescribed treatment for six weeks to three months at a time. He used a different test to identify bacteria and his results said I couldn’t be on the antibiotic I was currently taking. This was confusing, as this antibiotic was definitely working for me. I spoke to the Professor and he said I must stay under the care of only one consultant at a time. He explained why he didn’t agree with the test (broth culture) I’d had at the other clinic. He said his team’s research has shown these tests can grow many bacteria found in the bladder, even good bacteria not responsible for the infection. This means the results can mislead treatment. The Professor’s treatment protocol goes by the patient’s symptoms as well as looking at fresh, unspun urine under a microscope to look for infection signals. He has been specialising in this for 37 years, which is the same amount of time I have been alive! I decided to stick with his knowledge and experience and stayed under his care.
I am 100 percent symptom and antibiotic free after 12 months of treatment!
My bladder symptoms did improve after the surgery to remove the endometriosis, but I had started treatment for a chronic UTI at the same time, so it very hard to say if the endometriosis on my bladder was causing the pain or the infection. Both Professor and my gynaecologist said the two conditions weren’t connected and I was unfortunate to have both. I do think the endometriosis found on the outside of my bladder was causing some of my symptoms. Once I was on the right treatment for the infection, that was helping too. I still believe treating both the conditions helped me recover a lot quicker.
I had a yearly review in March 2019 with my gynaecologist and I’m doing well so far. But I must remember endometriosis is a lifelong condition and it can come back at anytime
I think addressing both conditions was the best decision I ever made! I was on the right antibiotic from the start of my chronic UTI treatment and I responded quickly. When I went back to London to see the Professor a year later, he looked at my urine again and my cell counts had gone from being high, to barely anything. And I no longer had symptoms. He suggested I trial coming off antibiotics, so I jumped at the chance. I tapered down the dose over five weeks. I can now say from April 2019 I am symptom free and antibiotic free! Things are going well and I’m even able to have alcohol again (which I’d quit in May 2016). I’ve had a few trips away with no flares at all. Fingers crossed it stays this way!