Often misdiagnosed and misunderstood, here’s everything you need to know about painful bladder syndrome
Women are more likely than men to suffer from recurring UTIs and, in some cases, the underlying problem is interstitial cystitis — an often misunderstood condition otherwise known as painful bladder syndrome. More prominent in women, the condition usually affects those over the age of 30, but the cause is currently unknown.
Dr Masarat Jilani, General Practitioner and resident doctor for bladder healthcare company Jude, explains more about the debilitating condition, its diagnosis and how to cope…
Signs and symptoms
The symptoms of painful bladder syndrome vary among those diagnosed, but usually involve chronic pain or pressure in the bladder and pelvic region, ranging from mild discomfort to agonising pain, combined with a persistent urge to urinate or burning — much like a UTI without the infection.
Dr Jilani says: ‘Interstitial cystitis can be very disruptive, impacting everything from work life to personal relationships. Women may find they are repeatedly treated for urinary tract infections with antibiotics before receiving a diagnosis.’
The cause of the condition is currently unknown but has been attributed to damage in the bladder lining, problems with pelvic floor muscles and the immune system causing an inflammatory response. Reported symptoms or ‘flare-ups’ include frequent bathroom breaks during the night, back pain, blood in urine as well as bladder spasms and stiffening of the bladder wall affecting the capacity to hold urine.
Describing the regular flare-ups of interstitial cystitis, Dr Jilani says: ‘Some experience rapid onset pain, but for some it’s a more gradual build up. Symptoms tend to fluctuate and may occur after having certain foods or drinks, during periods of stress and towards the end of the menstrual cycle.’
Lifestyle factors are also known to play a part, including exercise and most commonly sexual intercourse. ‘Some people experience worsening of their symptoms during and after sexual activity and there is an association between interstitial cystitis and vulvodynia — pain in the vulva,’ explains Dr Jilani. ‘Modifying activities through trial-and-error will help, as well as using a good lubricant to ensure less friction.’
Getting a diagnosis
Before the condition is confirmed, several tests are performed. These include vaginal swabs and urine tests to rule out causes of similar symptoms, such as a UTI, endometriosis and some forms of cancer. Dr Jilani says: ‘Patients may be referred for a cystoscopy, where a thin camera is passed into the bladder. This will look for any tell-tale patches of inflammation in the lining of the bladder or other abnormalities. At this time, there is no clear evidence that interstitial cystitis is hereditary or something people are born with, however studies are looking into any genetic links.’
Pain management
With varying symptoms comes different approaches to pain management — from over-the-counter painkillers to prescription drugs, including nerve pain medicine, numbing agents or anti-inflammatory medications injected into the bladder itself. Supportive therapies have been found to have a positive effect, including specialist pelvic floor physiotherapy exercises, acupuncture and counselling. Transcutaneous electrical nerve stimulation, also known as TENS, can relieve pain by sending electrical impulses into the body.
Dr Jilani recommends small everyday lifestyle changes, which can help to manage regular flare-ups. However, these are individual and it can take time to get to know your body. ‘It’s worth considering diet, fatigue and stress levels and bladder habits,’ she advises. ‘Avoidance of certain food and drinks that exacerbate symptoms will be different for everyone, but common culprits include caffeine, alcohol, artificial sweeteners, hot pepper and vitamin C containing foods.’
Dr Jilani suggests starting a symptom diary too. ‘Identify such factors and monitor flare-ups,’ she says. ‘I would recommend plenty of rest, staying hydrated as well as using heat pads or hot water bottles to provide some relief from the pain.’
There is more to be understood about the complicated causes of painful bladder syndrome with doctors including Dr Jilani welcoming further research. For help and support, the Interstitial Cystitis Association (ichelp.org) lists the current clinical trials being conducted globally, and shares personal stories and resources.