We are incredibly grateful to everyone who has chosen to share their Pelvic Radiation Disease (PRD) experiences with us.
Whether you’re living with PRD, caring for someone with PRD, or you’re a health professional supporting people with PRD, your story matters. You can share your experience of 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 our Support page.
After the initial side effects of treatment subsided, Tara’s symptoms returned eight years later and have progressively worsened, placing significant limitations on her very active lifestyle.
“It’s critical that healthcare professionals learn about PRD and don’t just assume that because you’ve survived cancer, everything is fine.”
Corinne shares a candid account of her life with Pelvic Radiation Disease (PRD), highlighting its challenges and, in particular, the impact of lymphoedema on her daily life. She describes how this condition affects her mobility, comfort, and overall well-being, bringing additional obstacles to navigate.
“A few weeks after my treatment ended, I developed lymphoedema. First in one leg, then both. This affects me every day and is incurable. I manage it well, but it impacts my life in every way.”
Karen shares her experience with the late effects of treatment for anal cancer. Despite the challenges, her strength and resilience shine through. She highlights the importance of informed consent and raising awareness about potential long-term effects of treatment.
Karen lives in the USA, where she received her treatment. It is important to acknowledge that treatment options and care can vary significantly, whether in the UK or overseas. We strongly encourage you to discuss any concerns with your healthcare provider. The PRDA is a UK charity and the PRD Best Practice Pathway is designed based on UK signposting and NHS care.
“…[I] needed to know where a bathroom was at all times. Many accidents occurred over the years. This has been the most difficult side effect.”
Amy experienced fertility loss at a young age and significant GI symptoms for the last eight years. She talks about how tests, following episodes of faecal urgency and incontinence, led to a diagnosis and a referral to a colorectal surgeon. Amy is currently contemplating surgery as a potential option for her ongoing symptoms.
“I can’t remember if I was ever told about any long term effects but I still would not have changed the treatment I had, it saved my life at the end of the day…”
Shona’s shares how treatment-induced menopause impacted her life, and how changing jobs provided them with a much-needed reprieve, allowing her to better manage their symptoms and find a supportive work environment.
“I simply couldn’t be the person I was before. My life really did change full circle. My attitude to life changed, how I view things changed…”
Binkie shares her experience of significant delays in receiving appropriate medical treatment and. Her story highlights the impact of missing medical records and life-changing interventions.
“I cannot help but wonder if I had been seen earlier by a doctor, might the outcome have been different?”
Laurie had radiotherapy treatment in 2022 and shares her experience with Pelvic Radiation Disease. She explains how she underwent emergency surgery to create an ileostomy. (An ileostomy is a surgical procedure where a part of the small intestine is brought to the surface of the abdomen to create an opening called a stoma.)
“…I’m constantly reminding myself that although it’s challenging living with it, I’m alive and it’s enabling me to do the things I love to do.”
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.”
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.
As part of our Media Library, we have recordings of conversations with people discussing their experience living with PRD which featured in our past Annual Conferences.
Living with Pelvic Radiation Disease – taken from our 2022 Annual Conference recordings.
Catherine Sharma in conversation with Stephen, who shares his experience of living with Pelvic Radiation Disease. Catherine Sharma is an Information and Support Radiographer at Nottingham Late Effects Service.
Meeting the needs of people with psychosocial difficulties due to Pelvic Radiation Disease – taken from our 2021 Annual Conference recordings.
Willie, a former PRDA Trustee, in conversation with Lisa Punt, a PRDA Trustee and Centre Head at Maggie’s Cambridge.
modified: 3rd March 2025