Urinary Tract Infections have ruled my life

Urology Month 2022

September is Urology Month and is an opportunity to help raise awareness of conditions such as bladder and prostate cancer, bladder conditions such as incontinence, retention, UTIs and kidney stones.

This Urology Month, Bladder and Bowel Community member, Anna Somerville-Large has kindly agreed to share her story with us about living with lifelong urinary tract infections and urinary retention. Despite living with chronic bladder issues, Anna has lived in all corners of the globe and currently resides in Kenya.

“I was 16 years old when I had my first diagnosed episode of ‘cystitis’, but I recognised that I had struggled with bladder symptoms since I was a child. I grew up in a single parent family and I was the third of four children. My eldest sibling had a lifelong chronic illness and I mostly hid my problems from my mother as I felt that she was already heavily burdened.

I wet the bed up until I was six years old and I would often need to crouch down in order to stop wetting myself, which would cause pain and a burning sensation.

Urinary frequency was almost a joke… once as a small child on the Greenline bus back from through London, the driver had to stop to let me use a toilet!

After a drive down the M40, my mother had to stop and a kind security guard, seeing how desperate I was, to let me use the toilets at Madame Tussauds.

In a way, my family was very supportive and accommodating with my condition at the time. However, there were not- so- funny times such as puddles on the floor at school after being denied access to the toilet.

It was only three years ago that my urologist recognised that I have probably had a problem since birth

“Even though these issues have been evident throughout my childhood, it was only three years ago that my urologist recognised that I have probably had a problem since birth and have continuously had low grade infections for most of my life. He said that (bladder) crises happen at five stages of life – at birth, at marriage, first sexual activity, childbirth and then menopause and this seems to be the case for me.

When I needed antibiotics to treat another UTI, I was made to feel promiscuous

“At university, when I needed antibiotics to treat another urinary tract infection, I was made to feel promiscuous and I realise now that this affected how I sought treatment. I would quite often just try and flush it out by drinking gallons of water – the problem is that it meant I needed to be close to a toilet. I even tried drinking baking soda in water, which helped with the pain but not with the treatment of the actual infections. I had infections two to three times a year and I would hold out from seeing my GP until I was in masses of pain, making the issue worse. 

“By the time I was married and I had to move to a remote part of Southern Sudan, I thought I had all my symptoms under control until one day when I got so poorly, I couldn’t get out of bed and had to be ‘medi-vacced’ to Nairobi for treatment. Once there, they mentioned that I was retaining urine but other than telling me to double-void there was no further advice.

“After having my children back in England, I went on to have further bladder crises and ended up having my first urethral dilation to deal with the urinary retention. We moved as a family to Azad Kashmir, North of Pakistan. My and a doctor had alreadythere started me on a daily antibiotic, which I took for 18 months and hasits  helped to give me some relief. If I thought an infection was brewing then my urine was tested straight away to see what antibiotic would be effective before I started treatment, and this worked very well for a while. 

I woke up to find that I couldn’t wee at all

“By this time, we had moved to Kenya and I was getting infections twice a year again and I was having to exert real pressure on my abdomen just to pass urine. I had a further dilation in 2016 and a third in 2020.  At this point, the lab was struggling to pinpoint the cause of these infections, and in April this year, feeling desperate I reached out to my urologist for a further dilation. A month later, I woke up to find that I couldn’t wee at all. By lunchtime, I was feeling very uncomfortable and after a call to my urologist, I ended up being catheterised in hospital and having 4 litres drained.

“It now turns out that the over distention of my bladder over the years has caused my detrusor muscle to fail. I lost a lot of what I thought of as middle aged spread and have gained some energy but I am still learning to cope with this ‘equipment’ (catheter).

Living in Kenya, means that supplies are difficult to get hold of and I try to purchase what I need when I’m back in the UK. I’m hoping to start ISC (intermittent self catheterisation), but again I’m concerned about getting supplies. but I’m guessing as with so many other aspects of my life, it will be a DIY job!”

We thank Anna for her time in sharing her story and wish her all the best with her ongoing healthcare journey. You can find out more about bladder conditions, treatments and catheter care by visiting our online catheter hub.

If you are struggling with bladder symptoms then we urge you not to feel embarrassed about visiting your GP to discuss your issues. Quite often these can be resolved quickly and without the need for further treatment.