Just before the Whitsun recess, I held a debate in Westminster Hall to highlight a devastating condition that has been ignored for far too long: Chronic Urinary Tract Infections. For thousands of women, this illness is not just painful, it is life-destroying.
Unlike Recurrent UTIs that may flare up a few times a year, Chronic UTIs involve a constant, embedded infection of the bladder lining. This entrenched infection causes unrelenting agony. Sufferers liken the pain to razor blades, acid burns and scorching knives. One patient described this torture as “a fire that never stops burning” in her body. Many living with the condition are forced to urinate over 20 times an hour, with every trip to the toilet bringing searing pain. The bladder becomes so inflamed it is hard to walk, while urine is bloody, fever is constant, and complications like kidney infections and sepsis are common.
I first learned of this condition through my constituent Phoebe, who has lived with a Chronic UTI since the age of three. Now in her mid-twenties, Phoebe remains a powerful advocate, but her daily pain is indescribable. Through Phoebe, and others, I have heard heart-wrenching stories of marriages collapsing, education and careers being abandoned, and lives reduced to bedbound isolation. Many sufferers cannot sleep, work, or care for their children. Sexual relationships become impossible. Depression and suicidal thoughts are tragically common.
Despite its brutality, this condition is often denied by healthcare professionals. Chronic UTIs are not yet recognised in specific NICE (England) or SIGN (Scotland) guidelines. Without these, GPs are unequipped to diagnose or treat the illness. Patients are misdiagnosed with conditions such as recurrent UTIs or interstitial cystitis and are routinely dismissed. Women are told that awful refrain – “it’s all in your head”. They are often given antidepressants instead of antibiotics, and refused specialist referrals.
Even if they do manage to get that referral – there is just one NHS specialist clinic for Chronic UTIs, the LUTS Clinic in London, for the entire country. While it offers expert care, the waiting lists are painfully long and treatments limited.
The current standard of care is long-term high-dose antibiotics that only offer partial relief and do not work for 30% of patients. In desperation, some patients travel abroad for unlicensed surgery costing over £30,000, including bladder removal. Others, tragically, choose to end their lives.
This is a medical scandal rooted in misogyny. If more men suffered this condition, we would already have better treatments and robust guidelines. We must change that.
I have asked the Minister to commit to three actions: introduce specific NICE guidelines for Chronic UTIs, fund and fast-track promising research trials that could lead to better treatment or a cure, and address the wider systemic failure in how we treat women’s health and chronic pain.
I’m pleased that the Minister has agreed to meet with me and other campaigners to hear more about this terrible condition – it’s a useful first step. But we must keep pushing for fast and serious action to help these sufferers, who are living with constant and agonising pain.
We know that women’s pain is too often overlooked. Chronic UTI sufferers deserve recognition, treatment, and most importantly, hope.
Chronic UTI sufferers deserve recognition, treatment, and most importantly, hope
