We are incredibly grateful to everyone who has chosen to share their PRD experiences with us. Your stories help to raise awareness of PRD and offer valuable insight into the real life experience of people living with PRD.
You are welcome to share your PRD story, whether it is you or someone close to you who is affected by Pelvic Radiation Disease (PRD).
Some of the content within these stories may be difficult for some people to read due to references to specific symptoms and experiences of PRD. These include difficulties with bladder and bowel control, sexual function, fertility, and mobility, as well as social isolation and mental health issues. If the content of these stories is distressing, or you need support with PRD, please visit the How We Can Help menu of our website.
Linda was treated in 1998 for cervical cancer and now lives with PRD. Linder talks about the impact of Radiation-induced lumbar plexopathy.
“I fell backwards and broke my ankles because of the weakening and crumbling of my bones due to the radiation.”
“This photo is from the last time, about three years ago, that I actually was able to get out into the woods. It was taken about two months before my official diagnosis so it holds significant meaning for me.” Read Linda’s story
May was treated for stage 2b cervical cancer in 2015 and shares how her PRD symptoms started just a few months after her treatment ended. Although May doesn’t talk openly about sexual relations, she has courageously shared her experience in order to help others.
“I don’t think anyone really understands that I can’t “do it” ever again.”
Dana talks about the impact PRD has had on work life, mental health and day-to-day life following treatment for anal cancer.
“A lot of people think once the cancer treatment is over that you are better, and you are back to what you were before: that is not the case for some of us.”
After ten years living with PRD, Milena found PRDA, and joined our Patient Advisory Group. She decided to tell her story to help other people living with symptoms of late-effects. Milena wants to open up more conversations about sexual problems, as they are rarely talked about but can hugely effect people’s lives.
“It was a relief to talk to someone else who had the same sort of pain and the same sort of issues as me. I just recognised it when she spoke and I thought, ‘yes, that’s my experience’.”
“Finding PRDA made me feel so relieved. It was similar to when I discovered Maggie’s. All of a sudden, you’ve got a great big hug! It’s not just you, there are other people like you. There’s a group of people that know exactly what I’m going through. The PRDA want to help others; they want to educate health professionals…”
Willie developed problems after radiotherapy for prostate cancer, and is sharing his story in order to help raise awareness of Pelvic Radiation Disease.
Keith is happy to share his story because, while he had been through a difficult time with PRD, he has a ‘happy ending’ and is back to enjoying life with his wife and family.
Rhea was 34 when diagnosed with locally advanced cervical cancer in 2016. After treatment, which included chemotherapy, radiotherapy and brachytherapy, she experiences many symptoms of PRD.
Tim shares his story of how taking up running and getting involved with PRDA have helped him in all sorts of ways following his radiotherapy for prostate cancer.
The following are quotes from people living with PRD:
“I simply had no quality of life. 3 weeks out of 4 I would throw up, followed by days of non-stop diarrhoea. I would become dehydrated – had to be put on a drip. I could not make any plans or appointments as they frequently had to be abandoned. If I had to travel anywhere, I had to go without eating for days before. I joined Dignitas, as I simply did not have a life worth living.”
“Dr Andreyev has helped me most and I was lucky to have been referred to him so quickly. The normacol sachets helped somewhat but since I was on the HOT II trial my bleeding has improved greatly. I will not know for some time if this is due to my having been given oxygen treatment until trial results are published. My quality of life has improved so much since I have received treatment for PRD.”
“In the early months of 2009 I received 27 units of blood by transfusion……The first treatments were unsuccessful but he persevered and finally laser treatments (5 courses) was successful. Previously I had been confined to the house but Dr Andreyev gave me my life back and now I am able to lead a social life.”
“I know that if I pig out on fatty food I will suffer for it!! I at least have control now! And I know what is causing the problem which has taken away the fear of a possible recurrence of the cancer. It was very helpful to me to know the cause of my diarrhoea and learn how to manage it. I no longer have the occasional “accident” that I had previously experienced. I would advise a friend to see a gastroenterologist. GPs seem to be unaware of ongoing problems.”
“Understanding the problem makes it easier to cope with”.
“I was told damage caused by radiotherapy was irreversible. No one was aware of a specific problem. I was given the feeling that I was lucky to have got over cancer. I felt very isolated, vulnerable. It has made all the difference to know that there is a specific causes for the symptoms, that other people suffer from the same problems and that there is a treatment. I felt I was being taken seriously.”
Modified: 9th November 2023