Sometimes symptoms of pelvic radiation disease (PRD) cannot be treated medically or improved with lifestyle changes. For these symptoms there are plans that can be put in place to help you manage during everyday life.
Suffering from incontinence of either the bladder or the bowels can be really difficult to manage and may make you feel like staying home. However there are plans you can put in place to help you deal with the situation.
- Access to toilets:
- If you are going somewhere new, checking where the toilets are before you go can make you feel calmer and help you avoid accidents
- 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 problem when they are out and about and need access to a toilet in an emergency and cannot wait. The card costs £5.00.
Order a card
- 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.
Order the PRD specific card
Order the generic toilet card
- Disability Rights UK have produced a National Key Scheme (NKS) Radar key that 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.
Order the Radar key
Order the Radar key with the regional NKS list.
- Emergency bag
- Keeping an emergency bag with you at all times so that you are prepared in the event of an accident can make you feel calmer and better equipped. You may wish to keep the following in your bag:
Tips from other women
We asked the women who use our Forum and women from our patient feedback group, Jo’s Voices, if they had any advice or tips they wanted to share with other women who are experiencing PRD.
- ‘Regular exercise and low fat diet has really helped me to manage my symptoms’
- ‘It is really important to use the dilators over a long period to avoid vaginal stenosis. I am not sure it is clear that the process of stenosis can occur even quite a while after treatment’
- ‘Ensure your bladder problem is diagnosed properly. I suffered until a fantastic urology nurse got me on a new treatment’
- ‘Be persistent’
- ‘It took me 5 years to find a specialist. During my quest I couldn't find any GPs with PRD knowledge and even some oncologists had no advice to give. I was about to have a permanent stoma procedure on the advice of a gastroenterologist. Thankfully I found a specialist in PRD and within a few weeks my symptoms were managed and I reclaimed my life again. PRD can be worse than the cancer treatment itself and women often suffer in silence’
- ‘Try not to panic about symptoms, but get them checked out immediately for your own peace of mind – once I had a diagnosis of radiation cystitis the sight of blood in my urine created less panic, but was still upsetting’
- ‘Stay hydrated. Concentrated urine irritates the bladder so drink masses of water to prevent bleeding. If bleeding occurs double water intake to industrial amounts for 24 hours to clear bleeding’
- ‘Things I avoid – strong coffee, red wine (too much alcohol in general), fruit juice and citrus, cigarettes and lifting heavy loads’
- ‘Try keeping a diary of incidents and work out what might have caused them so you can see a pattern. For me it was long journeys by car or particularly plane – I drank less as didn't want to visit loo every half hour – hence dehydration often resulting in small bleeding the following day. Alcohol (often results in mild dehydration) I worked out wine was the worst culprit so I try to avoid it now’
- ‘Experiencing these symptoms would be scary for anyone, but especially so for cancer survivors. Is it back? We're on high alert for any malfunction. Always go back to your consultant if symptoms worsen or change, but in the meantime keep calm and carry on’
Michelle talks about things she has found useful when coping with her PRD.
‘One thing that has been quite useful is obtaining an 'I Can't Wait' card, and a master key to disabled toilets across the UK, which means I can theoretically access any disabled public toilet or show private businesses and establishments that I have a genuine need to access a toilet quickly.’
Read more of Michelle’s story.