Bridget, 55, had UTIs throughout adulthood but five years ago, although her bladder pain got worse, her tests started coming back negative.
“During my life I have had urine infections but a change took place from 2003 when I had a particularly bad urine infection. I had further infections treated with short courses of antibiotics by my GPs over the years. During 2010 the pain got worse but no bacteria were grown from urine tests even though I had white blood cells, epithelial cells and some red blood cells again intermittently. The pain was difficult to live with.
I have prolapses and an intussuscepted bowel so I saw a urogynecologist and a colorectal surgeon. I told my urogynecologist about my bladder pain but he just did urodynamics tests and said there was nothing wrong apart from a cystocele which should not be painful. I asked for further investigation into why I had so much pain from my bladder but he told me there was no reason to do this as my bladder was fine.
I saw a gynaecologist who told me that my bladder pain had nothing to do with my prolapses, and all the time my GP kept testing my urine and occasionally giving me short antibiotic courses due to me having white blood cells in my urine but no bacteria could be grown from my urine.
I then saw another urogynecologist who I had heard was good with bladders. They also did urodynamics – invasive testing which made me feel worse. I was given a flexible cystoscopy where a tube is put into the bladder with a camera. The nurse tried to put the tube into my urethra but it was so swollen that the flexible cystoscopy tube first went into my vagina so the nurse then firmly and painfully pushed the tube into my bladder.
The infection in my bladder wall could be seen on the screen. The walls of my bladder were a coffee colour and the blood vessels were black. The nurse explained to me that I had follicular cystitis which had been caused by an infection not having been treated correctly and for long enough, resulting in chronic infection deep in my bladder wall and in my urethra. I bled quite badly for five days straight, from the tube being inserted.
I was given antibiotics for a few weeks but the infection got far worse and so did the excruciating pain. I found it hard to do anything and even getting to the hospital for my appointments was very difficult. I felt suicidal with the pain that went on 24 hours a day and was impossible to sleep through. My children were scared by how much this affected me and my daughter did as much as she could around the house.
My GP just didn’t know what to do because the lab tests kept coming back negative.
Finally in March 2014 I went to the LUTS Clinic and started antibiotic treatment straight away. I now work more hours and am living my life without the dreadful pain I was in before. I am still being treated but I have my quality of life back and can look after my son who is still at school.”