Editor’s note: Minor edits have been made for readability, including the addition of subheadings, while keeping Bernadette’s voice and experience true to her original submission. Bernadette’s story contains some medical terms, which we have explained in the footnotes below.
Support resources are also shared at the end of this page.
My cancer diagnosis and treatment
I had a hysterectomy for stage 1 endometrial cancer in 2022. During Covid I took myself to my local A&E with severe right-sided back pain, to find I had a blocked kidney caused by a large tumour sitting in the vaginal vault. I had a stent fitted into my ureter and I was prescribed 38 radiotherapy treatments, plus four rounds of chemotherapy to open up the cells in the tumour to make them more receptive to the radiotherapy. Unfortunately, I had a heart attack just after the first round of chemotherapy, so I did not have any more, but I recovered well.
The side effects and late effects of treatment
During the radiotherapy treatment I had a few admissions with severe urinary tract infections requiring intravenous antibiotics. My right kidney had also been damaged from the blockage. Since completing the radiotherapy, which shrivelled the tumour to practically nothing, I have had severe bowel and bladder problems.
I bled from my bladder quite severely, so I had a cystoscopy and was told that my bladder was extremely inflamed. I am now two years down the line since completing the radiotherapy, and my symptoms are getting worse, not better. I cannot open my bowels without suppositories, having to manually evacuate, and using irrigation regularly. This is so painful and difficult to cope with. I was also left with a fracture in my lumbar spine from the radiotherapy. All in all, it has been thoroughly miserable living with all these problems.
I explained them to my oncologist, but nothing was being offered. She did refer me to see a gastroenterology surgeon at my request, but I’m still waiting.
Wanting someone to take my symptoms seriously
I saw my oncologist last week after being very unwell for three weeks with a severe urinary tract infection that caused so much pain. She examined me and was shocked to actually see how much urine just poured out, so she booked me in for an urgent MRI. I felt relieved, as this should provide answers as to what is causing all of the symptoms I have been living with.
I can honestly say that if I had known how bad the complications from radiotherapy could be, I don’t think I would have gone through this, as my quality of life is so poor.
I have always been a positive person, but this has dragged me down and it is hard to stay positive. The difficulty I found was getting someone to listen and take these side effects seriously. I had to ask for a referral to a gastroenterology surgeon, as I feel the only way forward would be a colostomy. I also asked for a referral to urology. None of these were offered.
The importance of support
I am a strong believer that everyone going through a cancer journey needs an advocate if they are unable to do this for themselves. From my experience, once treatment is finished, you are on your own. At my three-monthly check-ups I get told to contact them if I have problems. Believe me, this is impossible. Emails and telephone messages are ignored. You are very much on your own, which is why these support groups are invaluable.
Talking to a friend who had thyroid cancer, her experience was very different in terms of support, so it depends which team you are under.
Update Following My MRI Scan
I had the pelvic MRI scan on 4th June. I hate these scans as I am claustrophobic, but I was in so much pain that any fear was overridden by my need to find out what was causing these symptoms. I can hardly walk now as it exacerbates the pain in my pelvis.
As always, the radiographers were kind and understanding and played old Motown music whilst I was in the scanner (I could name all of the songs!).
My consultant rang me on 10th June with the results. The good news, amazingly, was that there was no sign of any malignancy. I am now nearly five years post-treatment. The growth was totally zapped with radiotherapy, but unfortunately it caused so much damage to other structures.
Finally getting some answers
The reason that I am in so much pain, with frequent urinary tract infections and other symptoms, is that I have a large fistula between my bladder and bowel. I knew I had one years ago as I would sometimes have stool and wind coming through my vagina. However, it has definitely got bigger as the wind is like gale force, and the noise level is so loud you can hear it from some distance away!
I should have felt a sense of relief that there were no signs of secondary cancer, but this pain is so overwhelming I just couldn’t be happy about anything.
I have what is known as Gouverneur syndrome. I lookd it up as soon as I got home. It is a collection of symptoms caused by a vesicointestinal fistula, and one of the causes is radiotherapy damage. The symptoms of Gouverneur syndrome are: pneumaturia, faecaluria, obstructive constipation, tenesmus and severe suprapubic pain.
Looking ahead
I have been told that there will be a multidisciplinary team meeting this week to discuss a treatment plan, but my research indicates the only option would be surgery on my bowel, resulting in a colostomy. This would give the fistula time to heal.
I would welcome anything to ease the pain and other symptoms, as my quality of life is so poor. I should be grateful that I am still here. The past four and a half years have flown by, and I honestly thought I wouldn’t be here as they couldn’t operate and the only treatment available was radiotherapy.
Radiotherapy is a lifesaver, but I know now from talking to survivors that nobody is told about the side effects. I have tried to be strong, as we all do when fighting this horrible disease, but now I am wiped out. My reserves have gone and I no longer have good days with all these symptoms. I am praying this operation will help with the pain and allow me to regain some form of normality.
It has taken all this time to get a diagnosis for the cause of my symptoms, and I hope that by sharing my story it will help anyone who is facing the same challenges. I am sure the risk of developing a fistula is high after radiotherapy.
If you are reading this, I hope you are recovering well and enjoying life. Wishing you all the very best in your journeys. Remember, you are not alone. There will be someone here going through the same thing.
| 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. |
| fistula | an opening or channel that connects two body parts that shouldn’t be connected. |
| Vesicointestinal fistular | an opening connecting the bladder to the bowel or intestines. It allows urine, gas, or stool to pass between the two systems, which can cause severe urinary tract infections, passing air when urinating, and pain. |
| Pneumaturia | having gas or air bubbles in your urine. |
| Faecaluria | having faeces (poo) in your urine (wee). |
| Tenesmus | the constant, often painful urge to go to the toilet, even when your bowels are empty. |
| Suprapubic | above the pubic bone. |
Support for you
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.
If you’re feeling overwhelmed, or struggling with your mental health 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.
updated 1st July 2026