The following stories are provided by sufferers of chronic UTI.  They illustrate how patients are failed by testing, dismissed by medical professionals and often made worse by standard urology treatment pathways.

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“I spent a year going to my GP, for them to send off urine samples, only to be told countless times that there was nothing wrong with me. I was finally referred for a cystoscopy but all they found was inflammation. I bled terribly for months after that and my symptoms became much worse. I was bed-bound for nearly six months. In 2014 I was admitted to hospital 24 times with extreme bladder and kidney pain. I was told by Urology that I had interstitial cystitis and that all they could do was manage my symptoms. I lost my identity, my job and all of my confidence. I was continuously told I was imagining this, and that would I benefit from CBT counselling.”
KL

 

"Several urine tests at the GP surgery and samples that were sent to the laboratory came back as clear apart from three that registered as 'mixed growth' and were interpreted as ‘contamination’. After the initial urology appointment I was given a full examination and tests to check the functions of the bladder. The results proved to be normal and I was told that what I was experiencing was 'just a post-menopausal problem – it’s nothing’. I explained that I was still in intense pain but the consultant was dismissive. I told him again that it felt like a bladder infection and he said that I should seek a referral to him in three months’ time if I still thought that was the case. I left the hospital in complete despair. I must stress that it is the pain of this condition that is not to be underestimated. At times it has felt as if a razor blade is being slowly dragged across the bladder wall and through the urethra – it is pure torture. Obviously this has a terrible impact on day-to-day living and on quality of life in general.”

FE

 

"I can’t remember how many times I went to the doctor. They started putting on my notes that I was an anxious woman. Eventually they sent me to a psychiatrist. He basically said: ‘You’re quite anxious. You’ve regressed back to being a baby’. That was terrifying to hear. Being told it’s in your head when you’re in so much pain is incredibly scary. I was struggling to work. I was phoning my husband multiple times a day saying that I was going to kill myself. I was all right in public but hysterical at home.”
PH

 

“At the age of six my daughter had pain, urgency and frequency. She was unable to sleep at night and attend school. She had faecal incontinence. At worst she was only able to hold 10ml of urine. She told me that she wanted to die. Short courses of antibiotics cleared the infection, only for it to return 48 hours later. Urine cultures came back as contaminated sample, mixed growth. These were deemed negative by the GP. At the local hospital the consultant suggested A had painful bladder syndrome and prescribed cimetidine (inhibits stomach acid production and mainly used in the treatment of heartburn and peptic ulcers) even though she would have a temperature, pain urgency and frequency – clear signs of infection.”
AP

 

“S had her first urinary tract infection at the age of two. By the age of four she was having regular, acute infections with fever, vomiting, severe stomach pain, pain on passing urine and extreme tiredness. One consultant told me: “she is just one of those children that get infections”. A paediatrician declared that urine test results showed there was no infection and constipation was the cause of the stomach pain. She asked me to stop asking S if she has pain on passing urine. Four years of this is a long time in a little girl’s life. My very bright, happy little girl is now anxious, in constant pain and is missing her friends and schooling.”

KD

 

"As a child, I received a misdiagnosis of Overactive Bladder Syndrome following several urine cultures showing mixed growth. My doctor suggested that I should be denied access to a toilet for long periods while at school in order to ‘train’ my bladder. The incredible pain, embarrassment, deterioration and fear that I suffered meant that I became too terrified to attend. Due to increasingly worsening symptoms, I underwent two urodynamics studies, three KUB ultrasounds and two rigid cystoscopies under aesthetic. During the second one I also underwent a ureteroscopy, retrograde study, urethral dilation, dilation of both ureters and bladder distension. These investigations came at a massive cost to my health and I was hospitalised on multiple occasions with severe uncontrollable pain, vomiting, septicaemia, kidney infections, urinary retention and passing frank blood clots that were so thick that I was unable to pass urine. Despite seeing five urologists, multiple doctors, nurses and incontinence specialists, I was offered no answers or solutions to my problems.”

GH

 

“From 2008 to 2014 I became more and more unwell and suffered constant and severe urethral and bladder pain which spread into my pelvic floor as well as constant irritation, burning, frequency, urgency and incontinence. I had CT and MRI scans, further tests and consultations with gynaecologists, urologists, uro-neurologists, pain consultants and pelvic floor specialists. I saw around 10 consultants. I tried many treatments: specialist pelvic physical therapy, OAB medications, nerve treatments, pain medications, PTNS, acupuncture and hormonal therapies. In seven years I did not find one doctor who had any diagnosis or treatment plan. I was told that I should learn to live with this pain and that there was no hope of improvements. At various times I told consultants and GPs I felt I had an infection – they just dismissed me saying I was having a ‘flare’ of pain. I had raised levels of white blood cells at various times but was told it meant nothing by many different doctors and clinics. I asked often for a sample to be sent off for culturing but was repeatedly refused. I had no diagnosis and no hope. I had relentless pain every day and night with no ending in sight.”

JG

 

“The pain was difficult to live with. I told my urogynaecologist about my bladder pain but he just did urodynamics tests said there was nothing wrong. I asked for further investigation but he told me there was no reason to do this. 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 urogynaecologist. They also did urodynamics – invasive testing which made me feel worse. I was given a flexible cystoscopy. 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. The infection in my bladder wall could be seen on the screen. The nurse explained to me that I had follicular cystitis which had been caused by an infection not having been treated correctly. I bled for five days quite badly from the tube being inserted. I was given antibiotics for a few weeks but the infection got far worse. 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 GP just didn’t know what to do because the lab tests kept coming back negative.” The following are excerpts from “bladder stories” provided by chronic UTI patients who illustrate how they are failed by testing, dismissed by medical professionals and often made worse by standard urology treatment pathways."

VM