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As pelvic radiation disease (PRD) can begin many months, years or decades after radiotherapy treatment has ended, women have often left follow-up care when they begin experiencing the symptoms. This, combined with the fact that PRD is made up of lots of different symptoms means that getting a PRD diagnosis can be difficult. Also, many women who suffer from PRD do not seek medical help, often because they feel they should be grateful they no longer have cancer and that these symptoms are just something they have to put up with as part of having undergone radiotherapy .
It is important for you to be aware of any symptoms you may be experiencing and the fact that they could be related to your radiotherapy treatment. You don’t have to suffer in silence; you can get help in managing and treating PRD.
If you are experiencing any of the symptoms of PRD you are not expected to just put up with them. You should bring them to the attention of a health care professional. If you are still receiving follow-up care you can speak to your oncology team, cancer nurse specials or consultant. If these symptoms don’t begin until you have left follow-up care you can contact your GP, a specialist nurse or any other primary health care provider you feel comfortable with. Your medical team may refer you onto a specialist for the symptoms you are experiencing. This could be a gastroenterologist, urologist, a physiotherapist, sexual therapist or pain expert, amongst others .
It can feel embarrassing to discuss problems with your bladder, bowels or sex life with your medical team, but please remember that they will have heard these things many times before and they will not be shocked or uncomfortable. It is important that you give them all the details you can and to let them know that you think your symptoms may be related to the radiotherapy treatment you have undergone so they can help you.
It can take a while to get diagnosed with PRD and you may have to see several doctors before you get a diagnosis so it is very important to be persistent. It may be worth keeping a diary to help you describe the symptoms you are having and how often you are experiencing them. This can help you to discuss your symptoms with your medical team and help them to identify the problems. There is help available and you deserve the best quality of life possible.
Macmillan Cancer Care have produced a guide for health care professionals on the long term consequences of pelvic radiotherpy that you can order from their website or download as a PDF. You may wish to bring a copy of this with you to help you discuss your symptoms with your health care team.