I’m an Aussie gal and have been living and working in the UK for a few years now. Up until 2016 I had had two UTIs over the years and was otherwise very healthy. Then in 2016 I had two more UTIs, in January and August, the January one being more severe, but August never left me. My symptoms were never severe frequency or urgency. At my worst, I was still able to hold urine for upwards of 3-4 hours, and on my worst day I would take 8-9 loo trips. But I was in constant discomfort, the hot/burning bladder feeling, heaviness, and a dull feeling of constantly needing to pee, which built in intensity over the hours between bathroom trips.
My GP referred me to a urologist in the UK because of the ongoing symptoms and I had a cystoscopy (without hydro-distension) which showed nothing, and an MRI – because they thought my pain could be endometriosis related (I found I had more severe pain around ovulation). I was left with no diagnosis.
During all of this, I wasn’t sleeping or eating because of my symptoms and my mental health spiralled downwards due to lack of diagnosis or understanding what was happening. I felt like I was being ignored by doctors, because they didn’t know how to help. I was offered numerous depression and anxiety medications and started taking amitryptaline, but I knew that if the pain stopped, my mental health would recover.
Giving up work and the treadmill of tests, IC treatments and medications
I had to quit my job in the UK and return home to Australia. Once home with my parents, I had a cystoscopy with hydro-distension, and laparoscopy to check for endometriosis. A very small patch of endo was found and removed, but it is unlikely that this was causing me any issues, and wasn’t on or near my bladder. The result of the cystoscopy revealed pinpoint bleeding in three quadrants, and I was diagnosed with intermediate level IC.
Whilst in Australia, I was put on amitriptyline and later Vesicare to try and deal with the pain, and the bladder awareness, and to help me sleep. My specialist gave me three months (eight rounds) of ilAuril instillations and these did seem to calm my pain significantly over that period. I had a six-week course of acupuncture, which I think was very helpful, if nothing more than to release some stress and anxiety, and my acupuncturist tried me on a few herbal treatments. Interestingly, after my first three days on herbs, I tested positive on a urinalysis for the first time in nine months, so I wonder if the herbs helped draw out the bacteria?
Once I had the results of this urine analysis, it confirmed my suspicions that because it had started with a UTI, my chronic pain was down to this. After all, how could this come from nowhere and be caused by nothing? I also found that when I was given short courses of antibiotics, my symptoms would ease, not disappear entirely, but they would ease.
Connection over social media & a new route to treatment
Given how isolated I was feeling whilst out in Australia I joined one of the IC support groups on Facebook, where I saw mention of Professor Malone-Lee, a chronic UTI specialist based in London. I started doing a lot of research, reading as much as I could, and then decided to book an appointment, what did I have to lose? I started preparing to return to the UK from Australia, to find out either way what was going on.
At my very first appointment with him and despite awful jet lag, I could finally understand that I was suffering from a chronic UTI which had been misdiagnosed and incorrectly treated. He had examined my fresh urine sample under his microscope in clinic and diagnosed me based on my white blood cell and epithelial counts seen in the urine. He gave me a prescription for Nitrofurantoin and Hiprex (methenamine hippurate) and once the prescription was filled at the chemist, I started treatment. I was also told about a patient support group on Facebook for patients of the Professor and other specialists helping those with Chronic UTI and joined this. To have a community of his patients around me 24/7 really helped.
Within a month my symptoms were easing, I saw a big improvement after adding in the Hiprex, and after four months, I was switched to Trimethoprim, I got better and better. For me the critical point of his treatment was the dosage and length of taking medication. No more short course, low dose antibiotics as I had been previously given in the UK and Australia.
Stopping the IC meds due to successful treatment for a chronic UTI
At the three month mark I stopped Amitriptyline, at the six month mark I stopped the Vesicare. To be honest I could have stopped it earlier, but was too scared! I am now 10 months in treatment – the same amount of time I was ill. I can eat and drink as normal. I was following a version of the IC diet before and food did still bother me during the first few months of treatment, but I just kept trying things. I only avoid large quantities of tomatoes and coffee now. Even wine, spirits and cocktails are fine. I have sex with no issues, I exercise regularly, I go out with my friends, I date and travel as much as I can. At this point on 95% of days I forget I even have a bladder. My life is almost back to normal, in fact, I think it’s better than it was before, because I appreciate it more.
I am due my next visit with Prof in within the next month and we’ll see what my counts are up to, but to be honest it doesn’t bother me too much either way, as I just want to continue to feel good. But I don’t think I’m too far away from trying to come off the antibiotics. Fingers crossed.
Finally, I would say to people reading my story, I’ve been very lucky in my treatment, and from what I have seen and heard from others, not everyone has such a smooth road. Everyone is different, but we all have hope! I’ve noted below to help, the important things for me throughout my treatment:
- Try not to get stressed out or anxious when you have a bad day. I try hard to keep things in perspective and stay calm. It will pass!
- Take inspiration from the other amazing people on the Facebook groups for chronic UTI. When I am having negative days, I remember those who are battling on when they have children and families to look after, or are pregnant, or those who do physical, demanding jobs and still turn up for work every day.
- Keep trying foods and drinks. For me, almost the most devastating part of my “IC” diagnosis was the diet. I’m a proper foodie. Yes, sometimes I paid for it the next day, but with persistence, and trying things when I was well enough, I’m back to my foodie lifestyle.