Chronic UTIs leave millions of women in pain without diagnosis or clear NHS pathway

A new report has highlighted how chronic urinary tract infections leave women in severe pain without a clear diagnosis or an established NHS treatment pathway.

UTIs are common and for most people are easily managed with routine NHS treatment. But around five million women in the UK have infections that keep coming back, and for some the infection never goes away. There are thought to be around 1.6 million women with a chronic UTI. Men are also affected, but in much lower numbers.

Patients describe the pain as like glass or razor blades inside the bladder. Phoebe Price, 26, said her life was almost normal between bouts of pain, but constant infections changed her. She had been creative and active, doing yoga, salsa dancing and travelling, including backpacking after leaving school. Her symptoms became worse during her university years. After years of GP visits, she ended up in hospital with a raging kidney infection and vomited at least every five minutes for about 11 hours.

Even when seriously unwell and on lots of medication, it took time for her condition to be believed. The physical pain took an emotional toll. She said there were many days when she did not know how she was going to live, and she used to go to bed and pray she would go to sleep and not wake up because she did not want to be in pain anymore.

The condition has no medical definition, so there are no clear guidelines on how to diagnose or treat patients when they see a GP. Dr Anderson, who is leading efforts to get chronic UTIs recognised nationally, said the issue is massive. She said urine samples are the commonest sample dropped in by patients every day. She has had patients who developed the condition after surviving cancer and told her it was by far the worst thing they had suffered. She called for better testing and treatment pathways. She said most GPs still hand out three days of antibiotics if the patient is lucky and is believed. GPs face pressure to limit antibiotic prescribing, but for this condition antibiotics are one of the only ways out if it is an infection. Very few patients can drink water to get themselves out of a urinary tract infection.

Professor Raj heads one of the few specialist NHS clinics and her team is testing a new UTI treatment for wider use in a London lab. The clinic had to close its waiting list because it is over a year long. Data from the clinic shows patients have spent six years going from GP care, sometimes seeing the GP again, before ending up at the clinic where other treatments have failed. Six years is the average. Patients are often exhausted and often not believed. About 80% have asked for documentation for work or travel to show they have the condition.

Phoebe Price spent about six months in bed, unable to function and lonely, with her cuddly toys for company. The room where she lay ill has become more like a sanctuary as her symptoms improved. She has finally received a diagnosis. She said this is a real crisis and called on the government to prioritise the issue and women's health. The Department of Health said it is committed to reducing the impact of chronic UTIs and has invested in research to ensure women are listened to. Many more women still do not have a diagnosis, and without a treatment pathway they will continue to suffer.