Pelvic Radiation Disease Association (PRDA)
PRDA is a patient-led group that aim to provide support for people of all ages suffering from pelvic radiation damage, and to campaign for better recognition of pelvic radiation disease, as well as improved facilities for treatment within the NHS. They have a helpline, an “email a nurse” service and they run support groups.
0137 274 4338
Bladder and Bowel Foundation
The Bladder and Bowel Foundation provides information and support services for people with bladder and bowel problems.
0845 345 0165
Toilet card: the Bladder and Bowel Foundation have produced a ‘Just can’t wait’ toilet card to be used by those affected by a bladder or bowel problems when they are out and about and need to access a toilet in an emergency and cannot wait. The card costs £5.00.
Disability Rights UK
National Key Scheme Radar key
Disability Rights UK is the leading charity of its kind in the UK. They are run by and for people with lived experience of disability or health conditions.
Their National Key Scheme (NKS) Radar key allows you to access all locked public toilets within the NKS around the country. As disabled toilets are often larger and more discrete than other toilets this can be good if you need to change. The key costs £4.50 alone or £8.00 with a list of available NKS toilets in your area.
Pain Concern is run by chronic pain sufferers. They provide information and support to pain sufferers, their families and their carers.
0300 123 0789
Pelvic floor exercises
The NHS has useful information on why pelvic floor exercises are useful and how to do them.
Macmillan Cancer Support
Macmillan Cancer Support improves the lives of people affected by cancer. They provide practical, medical and financial support and push for better cancer care.
0808 808 0000
Macmillan Cancer Support offers a generic toilet card as well as a toilet card specific to PRD, which provides a leaflet with a symptoms checklist for PRD. The toilet cards and key rings are designed to give you urgent access to a toilet when out in public. The cards are free.
Macmillan also have a Virtual Multi-Disciplinary Team (vMDT), which aims to support people who have long-term consequences after cancer treatment. Ask your healthcare team for a referral.
Jo’s Cervical Cancer Trust forum
Many women use our Forum to discuss issues surrounding PRD and to seek and provide advice and support.
Jo’s Cervical Cancer Trust film ‘Let’s Talk: Pelvic radiation disease’
Produced in August 2015 by Jo’s Cervical Cancer Trust, this film features real women sharing their experiences of having and managing PRD, as well as a health care professional explaining the main symptoms and effects of the condition.
The National Osteoporosis Society
The National Osteoporosis Society is the only UK wide charity dedicated to improving the diagnosis, prevention and treatment of osteoporosis and fragility fractures. They offer support and information for those suffering from osteoporosis.