Sarah’s story contains some medical terms which we have explained in the footnote section below her story.
This story includes references to suicidal thoughts. If you are finding things difficult, you are not alone. Support resources are shared at the end of this page.
Sarah’s experience, in her own words
I was diagnosed with advanced localised pelvic cancer. My MRI stated T4 N1 EMV positive. There were several organs involved and infiltration to pelvic wall and pelvic floor. I was given treatment in 2025 which consisted of chemotherapy with cisplatin, and radiotherapy over 31 sessions, 5 days a week.
Initially after treatment, I started to make an excellent recovery. I return to work within six weeks and I was doing really well. I had a yoga routine that I performed at work, and I started to notice a reduction in mobility and balance. I’d also developed carpal tunnel syndrome like symptoms in both hands and muscle cramps and pain throughout all my limbs and all my joints. I had reduced sensation in my legs and most profoundly in my feet along with tingling.
I was getting up at night every hour to go to the toilet and empty a good bladder full. I was in constant agony with leg cramps during the night using TENS machines and increasing medication for pain relief mostly for its sedation effect rather than actual relief of pain. I felt like I was on a downward trajectory.
I spoke to my oncologist and he simply said, “I have not seen this” And discharged me. My GP completed A blood test and left me to interpret the results for myself using the GP app. She added another pain relief, but nothing worked.
I felt lonely, scared, desperate, depressed, yes suicidal, all of those things and more. I also feel guilty – I survived cancer yet am struggling to contemplate life with these symptoms that no one seems to have heard of, let alone able to help.
Then I noticed my mobility decreasing. I was struggling to climb stairs, I had to lift my legs in and out of the car, I’ve gone from walking 2 miles a day to less than 100 yards before being in excruciating agony and absolutely exhausted. There is obvious muscle wastage in both of my legs. I asked for a referral for physiotherapy from my GP which was action however I felt their impression was that so long as I could walk that was enough.
I can’t tell you how tired I am of being told “Just give it time” or “ It hasn’t been that long since your treatment really, has it?”. Nobody listens – I explained that these are new symptoms that have appeared after recovering from treatment! Time is making it worse. Time is my enemy.
I’m a healthcare professional and I’ve used my medical background to try a number of different things to help myself and if it wasn’t for this honestly, I don’t know what I would’ve done. Nevertheless, it’s an incredibly lonely place to be.
I found this [PRDA] website today and read it. It’s like a ray of light through storm clouds.
I’ve tried numerous things. I’ve kept diaries. I’m starting to see changes and I’m beginning to feel real hope, that I cannot only live with condition but perhaps overcome it.
I want to share my story, but I would also like to listen to other peoples, to pick up new tips and tricks but mostly to feel that I’m not alone and that what I’m experiencing does exist.
| Footnote information | |
| MRI | (Magnetic Resonance Imaging) is a non-invasive medical scan that uses strong magnetic fields and radio waves to produce detailed, cross-sectional images of organs and soft tissues. |
| T4 | (Tumour stage 4) The tumour has grown through the outer lining of the bowel wall (peritoneum) and may be invading nearby organs or structures. |
| N1 | (Nodes stage 1) The cancer has spread to a limited number of nearby lymph nodes (typically 1 to 3). |
| EMV Positive | (Extramural Vascular Invasion): This means cancer cells have been found in the blood vessels outside the main bowel wall. It is a sign of more aggressive disease with a higher risk of spreading. |
| TENS | (Transcutaneous Electrical Nerve Stimulation) machine is a portable, battery-operated device used for drug-free pain relief. By sending safe, small electrical impulses through sticky electrode pads on the skin, it stimulates endorphins and blocks pain signals, treating muscular, joint, chronic, and arthritic pain. |
If you’re feeling overwhelmed, struggling with your mental health, or having thoughts of suicide, please know that you’re not alone and support is available. You can find help through the links below, or by speaking to your GP or a trusted healthcare professional.
- You can find a range of support options at Mind if you are struggling with your mental health.
- If you are struggling to cope you can contact the Samaritans free helpline, any time day or night on 116 123.
- For urgent medical concerns, contact NHS 111.
Living with PRD can feel isolating, but connecting with others who understand can make a real difference. Our online community offers a safe space to share experiences, ask questions, and find peer support from people who truly get it.
updated 23rd April 2026