Urology Awareness Month – Interstitial cystitis free information factsheet

September 30, 2021

We're at the end of September, which marks Urology Awareness Month. This was launched by the Urology Foundation in 2014 and it aims to raise awareness of urological conditions and to encourage men and women to take care of their urological health. 
The Urology Foundation says: “It is estimated that 1 in 2 of us will be affected by a urology condition in our lifetime. Our urology health is vital to our quality of life. But diseases and cancers of the kidneys, bladder, prostate and the male reproductive system are becoming more prevalent and devastating the lives of millions of men, women, and children in the UK.” 
In this blog, we discuss the poorly understood urological condition Interstitial Cystitis (IC) also often referred to as painful bladder syndrome, and how some people with ME/CFS may have this diagnosis. 
Dr Shepherd says: “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 the 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.” 
The main symptoms of IC include: 

  • intense pelvic pain under bellybutton 
  • sudden strong urges to pass urine 
  • needing to urinate more often than normal 
  • waking up during the night to go to the toilet 

You may experience these symptoms last for a period (days, weeks or months). Pain may be worse when you have a full bladder and often temporarily relieved after you have been to the toilet. People with female reproductive organs find that the pain is worse when menstruating (having a period). 


If you feel you may have interstitial cystitis, please visit your GP. Dr Shepherd, our Honorary Medical Adviser has also written a free information leaflet that is available to download for free here.

People with ME/CFS also experience bowel and stomach issues, we also have a leaflet covering all aspects from irritable bowel symptoms, how to manage symptoms and considering dietary changes. 
We are also collaborating with Bladder and Bowel Community to help spread helpful information about bladder and bowel issues, as it is important to highlight these issues that are often taboo subjects within society. 

If you need further information, please visit their website as they cover a wealth of information about bladder and bowel issues.

Bladder and Bowel offer

The Bladder and Bowel Community support the millions in the UK who are affected by a  bladder or bowel condition by providing online information via their website. They work towards making a real difference to the lives of those affected by bladder and bowel control problems and delivering the kind of services that will meet the needs of those people affected by these issues. 

They provide support services such as their closed Facebook support group with over 16K members, Home Delivery service for those with appliances such as a stoma or catheter and the original Just Can’t Wait toilet card

The Just Can’t Wait card has been designed to allow you to discreetly indicate to someone whilst you’re out that you need the toilet urgently. The Just Can’t Wait card is available for free as a Digital Card on Android or iOS smartphones or you can apply for a Plastic Card via post for a small charge. 

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