Hope you’re doing ok. I’m interested to know (being nosey) how you first found out about Pelvic Radiation Disease?
For me it was a bit of Google-Fu as I was desperately researching all these awful symptoms that had appeared since my treatment. I’d made the connection that radiotherapy was the cause as my chemo had been stopped after only 3 cycles.
I found the Marsden algorithm for treating GI effects of radiotherapy and that’s where I first found the term ‘Pelvic Radiation Disease’ it was a complete lightbulb moment. I was so relieved it wasn’t all in my head!
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I was fortunate that I was referred to my consultant who is very knowledgable about PRD, I didn’t know/never heard of it but the minute she explained it to me it was like she was describing the life I was living.
I never really found much useful information on google and have relied on her for accurate information
I now have an excellent medical team and I’m so grateful that there are professionals out there who are aware of PRD.
The first year after treatment was a massive struggle, I honestly must have spent hours and hours scouring the internet trying to find out what was happening to my body.
I picked it up during an oncology appointment and it described everything I was experiencing and I then started googling it and cane across PRDAUK and the Marsden algorithm 👍🏻
Oh yes, I’ve seen the Macmillan booklets more recently and they’ve got a lot more information. The ones I’m thinking of are called ‘Managing the late effects of pelvic radiotherapy in women’ (there is also a men’s version).
I think I was told about PRDA by a Macmillan nurse when I rang in desperation one day! Have largely learned to manage the problems with the help of a dietitian (gastroenterology based) after a referral from an empathetic GP, my pharmacist and my osteopath - she recommended a very useful book called "Gut" which is all about the physiology of the alimentary canal. it even has its own nervous system! Well worth a read.
I have seen two gastroenterologists , one of whom recommended milled linseed and Fibogel. I do not need the Fibogel now but would not be without my milled linseed! Started on 1 teaspoon a day and now have a tablespoon on my cereal - gradually increased over time Yum and Yay - available from Sainsburys, is a useful sized pack which fits in the fridge and does not oxidise before it can be eaten!
Diet makes such a big difference doesn’t it! My gastro and colorectal surgeon were very clued up on PRD and recognised my issues immediately just wished it had been picked up sooner.
Hi there. It’s a good question, and I hope one that needs to asked less as time goes by. I found out about late side effects from a Macmillan leaflet at the radiotherapy outpatients. It was such a relief to read , I think I sat and cried at the time. St Thomas’s was (then at least) very resistant to the idea of PRD, and it was not until I volunteered for a Marsden-led group who were investigating dietary advice after endometrial cancer that I really picked up on how wide ranging and severe it can be. It wasn’t the guy running it (he only had some really basic “five a day, less coffee, take a walk” level advice, which frankly, as a group of 8 or so women over 40 we knew perfectly well). It was the other women who were so helpful - over a (forbidden?!) coffee afterwards we laughed, shared stories, advice and reassurance which was lacking anywhere else. We discussed all the side effects on our digestion, but also on our emotional and sexual well being, which can be ignored by the medical profession.
So I went back to St Thomas’s and made more of a fuss, and to be fair once I’d made it really clear that I needed help they did slowly begin to react. It was never, ever ascribed to the radiotherapy, however. Even the gastroenterologist I saw over 3 years after my treatment would only hint that my symptoms were caused by pelvic radiotherapy.
I rang the senior , now consultant radiographer at the oncology unit which treated me and let her know of my late side effects. She accepted what I was saying, thanked me for telling them and asked me to keep in touch. The Oncologist that prescribed my radiotherapy is no longer there, but I guess they did the very best they could for me. 5 treatments a week for 6 weeks , then brachytherapy (Internal treatment) twice. My cancer is no longer in evidence but I have to live with PRD on a daily basis. Good to hear of others' experiences. I live in the provinces and have felt very alone in my difficulties.
I found out about it at a Jo’s trust event for cervical cancer. Fortunately my hospital just got funding for a late effects clinic so I knew I could access this.
Hiya, I found out about it a few years ago as I was googling long term effects of pelvic radiatherapy. I had cervical cancer in 2007 and when I asked at the time what effects I would get I was told......everyone is different. I didn't actually start getting effects until 2011 and I don't think even then there was much known about pelvic radiation disease - if there was my then GP certainly didn't mention it. Thank you for making this forum...
I had treatment for cervical cancer in 2013 and there was little discussion of late effects. I experienced consequences of treatment straight away but didn’t really get anyone starting to acknowledge PRD for a year later (once I’d had to have an emergency ileostomy).
So good to see that, slowly but surely, more health professionals are starting to recognise it now and there is more information available online. Being able to chat to others who understand is so nice ❤️
Someone said.....less coffee - hope that means more wine ! I confess sometimes I am my own worst enemy, I probably drink far too much black coffee. The only time I didn't was when I was having radiotherapy and chemo when my taste buds changed completely and all I could drink was hot water with a slice of lemon. However, when all was finished my taste buds went back to normal, though not a lot else did.
I really hope now that PRD is more recognised that people will have follow ups after their treatment is completed especially in the long term and I also hope this includes mental heath. I remember thinking when my treatment had finished.....ok what now? I only had annual follow ups for 4/5 years with my lovely gynee consultant at the Harley Street clinic but it nothing to do with PRD, just an internal to make sure everything was ok which thankfully it was.
This reply is rather late compared others you have had, but I have only recently joined this website. Before my radiology, my oncologist mentioned almost in passing, that I might have some side effects, which "in some people, these can last longer than in others". When I started to have increasing problems - all in the pelvic area - bladder leak, the awful realisation that there would be times when closeness to a toilet was essential because my bowel would just start to empty even while I was on my way to the bathroom (and many was the accident I had) and also the increasing back pain I had, I finally had some referrals because the GP was at a loss as to what help she could give me.
It was in the waiting room to see a urino-gynaecolgy (not sure if this spelled correctly or even the correct term) specialist nurse, that I saw a poster for Jo's Cervical Cancer Trust. And on contacting this trust was the first time I read the term Pelvic radiation Disease. Following up from there, I did eventually get a referral to a consultant who actually understood the position I was in. But I had already been told that it is not a specialism that is available in all areas. And later when my back pain was investigated by a pain specialist, I was told by him that 3 cracks in the final 5 vertebrae would almost certainly have been caused by radiotherapy. My GP thought it was wear and tear because of my age ( I was 69 at the time of my treatment). There is nothing much to be done about this but the pain is constant. I am now on a medicine used for osteoporosis, but my walking has got worse (I used to walk daily for pleasure and to exercise my dog, but I now have to pay a dog walker and find it hard to walk round the corner with my stick to post a letter.) I cannot lift easily and there are many other daily difficulties.
I am just over 5 years from the final brachytherapy which concluded the radiotherapy. I know I am lucky that the cancer so far has not returned. But I do have to say that my quality of life is very much lower than I was ever told to expect. And it's not a condition easy to explain to people or talk about even to close family. I am also a widow so that increases the loneliness I feel in this situation. It's been a help to express this so I was grateful to see your query when I joined this site.
So sorry to hear of your problems. I do hope that you can find ways to control bowel and bladder issues. it is so distressing to be "out of control" as it were. It has taken me about 5 years to get to a point where I am able to know what is going to happen on a day to day basis and even then I am taken by surprise occasionally. Food, mood and the gut itself determine how things will be. I often get intestinal "hurry " if I plan to go out. 2 tiny loperamide capsules can quickly stop my gallop. Useful if attending some important occasion or even just getting to a medical appointment.
I do not walk so much any more - and we loved walking in the countryside. "Lockdown"was a relief in some ways as I was able to potter in our own home and garden without feeling guilty 'cos I did not want to go out!
My husband now has his own issues around going out so we are grateful to have a pretty garden and a veg plot to keep us busy in summer. Who knows what the winter will bring!
Keep in touch - we all have slightly different problems but a common goal - to live our lives as best we can and obtain as much help and support as we can from health care professionals and from each other!
I received radiotherapy for an ovarian tumour in 1977. I visit Christie’s for an annual checkup and they keep an eye on me and refer me to people as necessary. I think I first saw a gastroenterologist in 2000, and things have been deteriorating throughout my life. I saw a new consultant in 2015 and the term pelvic radiation disease was used. It was a relief to know that all my symptoms are initiated by the radiotherapy, and are real, not just me being neurotic and anxious. I was so happy to know that it’s real, and known, and understood, if not readily fixable.
Leaflet in urology department found quite by accident. My question is how can I get a proper diagnosis? My gp is useless
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It's too bad my Oncology team never told me about it :/. #fail 
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