Urology and Myalgic Encephalopathy (ME)

In collaboration with ME Association

Bladder health can affect people very differently depending on other health considerations. For people living with ME, there are certain conditions and symptoms which are more common. We teamed up with the ME Association to highlight how common bladder symptoms are for someone who suffers with Myalgic Encephalopathy (ME), also known as Chronic Fatigue Syndrome (sometimes referred to as CFS).

One bladder condition that is rarely talked about but can affect someone with ME/CFS is Interstitial Cystitis or Painful Bladder Syndrome.

Interstitial Cystitis in someone with ME

Interstitial Cystitis (or IC) is chronic inflammation of the bladder wall that is not caused by bacteria  and doesn’t respond to standard antibiotic treatment. It can affect both men and women, but tends to affect women more.

Symptoms of IC can vary from person to person by can include:

  • Intense pain in pelvic area around the bladder 
  • Frequency and urgency symptoms
  • An increased need to pass urine at night

It can often be a difficult and long process to diagnose Interstitial Cystitis due to the similarities of the symptoms to other more common bladder conditions.

Urology and Myalgic Encephalopathy (ME)

Dr Charles Shepherd, Honorary Medical Advisor for the ME Association states:

 Bladder symptoms are quite common in ME/CFS, however the number of people who would meet diagnostic criteria for IC is really quite small.

Currently, I am not aware of any decent epidemiological studies that have provided information on actual prevalence of IC in ME/CFS. In medical terms IC is regarded by some (but not all doctors) as a co-morbidity in ME/CFS.

Symptoms of Interstitial Cystitis can flare for days, weeks or months at a time. Pain can often be worse when the bladder is full and temporarily relieved after passing urine. Symptoms can often be increased for those with reproductive organs during menstruation.

If you are experiencing any of these symptoms, it is important to see your GP, and to keep a record of how often and when your symptoms occur. 

The ME Association is a national charity that supports thousands of people with Myalgic  Encephalopathy/Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS) each year in the UK.  It is estimated that around 265,000 people in the UK are struggling to live with this debilitating condition.

ME/CFS is a neurological disease affecting adults and young people from all socio-economic and ethnic backgrounds. At least 25% of the people affected will be housebound or bed bound at any one time. They help to make the UK a better place for people with ME/CFS, Post Viral Fatigue Syndromes, and Long Covid, by providing support, information, campaigns, and investment in biomedical research. 

Further Information

Please visit the ME Association’s website that has a wealth of information including an extensive range of medical leaflets, factsheets, books, and guides. They also have a full guide on ME support services, written in association ith NICE (National Institute for Clinical Excellence).

If you are experiencing any bladder or bowel symptoms, you may find it useful to have a Just Can’t Wait card, which you can use to indicate discreetly whilst out and about that you need access to a toilet urgently. This is available as a digital card on iOS and Android or as a plastic card for a small fee.

For more information on Interstitial Cystitis and real life stories click here.