Your help needed to support women affected by pelvic radiation disease

Hello everyone,

We are currently working on new information about pelvic radiation disease (PRD) for our ‘moving forward after a cervical cancer diagnosis’ website section. This new information will sit within the ‘living with side effects’ pages here:  http://www.jostrust.org.uk/about-cervical-cancer/cervical-cancer/moving-forward-from-a-cancer-diagnosis/living-with-side-effects.

It will include information on what PRD is, how it is caused, how to get diagnosed, the symptoms associated with PRD, and methods to treat and manage it. We would like to include advice and tips from other women who have gone through PRD on how they manage their symptoms and strategies that have helped them.

We would like your help to generate the tips section. What advice would you give other women affected by PRD? What has helped you? Please leave your tips below. Any tips you leave will be anonymised within the website section.

Thanks so much in advance for your help!

Best wishes

Fran

 

Do not panic but...  

Get it checked out immediately (cystoscopy etc) for your peace of mind.

Once you have a diagnosis of radiation cystitis the sight of blood in your urine will create less panic but still be upsetting

No. 1 tip - 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.

No. 2 tip -Things to avoid  - strong coffee, red wine (too much alcohol in general), fruit juice and citrus, fags, lifting heavy loads

No. 3 tip - 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 particulary 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 worse culprit so try to avoid it now.  etc etc

Seeing blood in urine is scary for anyone but especially so for cancer survivors.  Is it back?  We're on high alert for any malfunction. Always go back to consultant if symptoms worsen or change but in the meantime keep calm and carry on.  

 

 

 

1 Like

Hi Amanda,

Thank you so much for your reply. This is great advice that I know will be useful to other women. We will keep you updated on the progress of this tips section.

Thank you so much for your help with this

Very best wishes

Fran