Hello and welcome the the PRDA online community!
If you haven't already, do check out the group guidelines under the pinned post section.
Please introduce yourself by replying to this post.
Please feel free to post or ask a questions under the relevant topics by clicking the 'Write' button.
If you need any help you can always pop me a private message.
Best wishes
Sarah
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Hello Sarah
I look forward to being part of a community of people with the problems related to PRD
I wonder where to begin!
It can be a lonely place to be and "lock down" has offered some respite from the worries associated with trips out. Home is a place of safety and the garden a haven from the outside world!
Physical symptoms are sometimes hard to manage but the emotional distress can be overwhelming. Doctors may tell you that you are a survivor and should be grateful. Family may not have a clue about what is troubling you.
In some ways it is best if they don't!
Thank you for inviting me to join
best wishes
Lynn
Hi all,
Thanks for inviting me to join this group!
My name is Rhea and I’ve been living with symptoms of pelvic radiation disease since my treatment for cervical cancer over 3 years ago.
It’s great to have a safe space for people to discuss and share the issues faced whilst living with and beyond cancer with pelvic radiation disease.
I look forward to getting to know everyone on here and learning from each other’s experiences 😊
Hello 👋
I’m 37 and had treatment for Cervical cancer nearly 7 years ago. I’ve been living with side effects ever since my treatment. It’s not always easy but I’ve learned to adapt.
I’m so pleased to have found a community where I can talk to others with PRD.
Hello Sarah and other PRDA members
I’m pleased to be able to contribute to the group, and to share any experience which might help. I had endometrial cancer 8 years ago. I still have digestive disorders but over time have found ways to reduce the symptoms and frequency. It was hard to get the medical staff to understand how debilitating it was, and I had to really fight my corner for further advice and help. Just have a charity which acknowledges PRD exists is a huge step...
Hi !
Its Lynn again (Jude after one of my favourite Roses!) I too had endometrial cancer in 2010 and the treatment was for an aggressive form of the condition. It had spread to the cervix. 10 years later I am still able to join this web site, go for short walks , enjoy my garden and share a joke with my husband. PRD is something else, which I am sure they told me about but it seemed a long way off and not worth worrying about!
Lovely to get to know everyone and share experiences. Let's keep talking! P.S it is so much cooler today and I am hoping for rain for my runner beans etc. Off to plant a few remaining bizzie lizzies. 
Please see my reply to Skellige, above. We have already found some common ground and I think some considerable empathy for each others situations. It is good to talk!
Hi thank you for making this forum. I had cervical cancer 2007 and my symptoms didn't start until 2011. I don't think much was known about PRDA back then. Wondering if you know when it was formally recognised ? I certainly find certain foods trigger my symptoms, naturally all of the ones I like. Also I do drink a lot of black coffee and I know this probably doesn't help. Foods that seem to trigger my symptoms are bread/wheat/lactose/onions/eggs - so definately no ice cream for me. I find gluten free food normally has loads of sugar in it - ho hum it's so frustrating,
I was treated for endometrial cancer in 2010/11 and the late symptoms only became really troublesome
in 2015 - I was used to a certain degree of IBS but this was IBS (C) with a vengeance!
Consultant surgeon sent me for a triple scan with contrast( chest, abdomen and pelvis) which confirmed I had no secondaries anywhere. I was then discharged from his care. Scan showed a "loaded colon". It took six months and a private appointment with a gastroenterologist who did a very careful colonoscopy, to confirm that my sigmoid colon, just above the rectum, was seriously scarred and painful - narrowed by the radiation. She put me on milled linseed and Fibogel and docusate! I now only need the milled linseed once a day and a moderately high fibre diet. Too much or too little and I am in trouble. I have a drink every two hours in the day.
I later found a gastroenterologist who was interested in Late complications of radiotherapy. He has warned me not to let anyone else intubate my colon! Danger of perforation I guess.
I saw him privately too. GP's were unimpressed with my symptoms. I was a survivor and should be grateful for that!!!!
I have been lactose intolerant (since the early nineties), unable to eat any of the onion family, and struggle with brassicas! Peas, beans, (not broad or baked!) tomatoes without the skin all OK.
Soya icecream - Swedish Glace is fine and comes in different flavours. I like vanilla best. They also do a soya icecream choc ice but neither are available at Sainsburys for the past week or so! High demand I guess.
Best wishes for your journey!
Welcome to the group Daisyc3cjs . A very good question!
The term Pelvic Radiation Disease was referred to possibly as far back as the 1980’s or early 90’s. However, it wasn’t defined until an article was published in 2011 entitled "Pelvic radiation disease": New Understanding and new solutions for a new disease in the era of cancer survivorship".
Although the term was first defined almost a decade ago, we understand that awareness of Pelvic Radiation Disease is still greatly lacking amongst many health professionals. This is why one of the main aims of PRDA is to work with charity and professional organisations to improve professional awareness of PRD.
Thats interesting- in 2009-10 I was asking around the Macmillan forum for post radiation information. At that time there was a study starting at Royal Marsden-unfortunately I didn't live near. I did continue trying to raise it with my consultant but to no effect.
I'm glad 10 yrs of dealing with it on my own has at last found company on here! Are you attached to any hospital trust?
If there are any studies (there should be!) could we hear about it on here?
Thank you.
Hi Greenfingers20 ,
PRDA isn't attached to any hospital but we do share any relevant research we come across our website's research news page as well as the online community and social media.
Our latest instalment to research news can be found here:
Thank you. I'll read it with interest. First look mentions a Specialist Nurse for PRD! If only...
Hi there
I’ve only just read your post, and recognise some of your trigger foods mentioned are similar to mine. If you haven’t explored it yet, the FODMAP diet has helped me a lot (I was able to find out I can’t digest fructose, for example). I’ve been able to adjust what I eat (hello blueberries and raspberries, goodbye blackberries) and found a few work around for cooking. For example garlic flavoured olive oil is fine where garlic itself can be pretty bad. Some nuts are highs trigger - cashews especially, others are fine. Just knowing what to limit has been very helpful. I now stick to one coffee a day, and feel your pain!
I was directed to FODMAP by the gastroenterologist at St Thomas’ in London, and I personally think going a medical route to check it out worked for me - there’s such a lot online that seems intended to sell certain products.
Meanwhile beg, steal or borrow a Cuisinart ice cream maker. Our daughter is lactose intolerant and we make nut milk ice cream and non-fodmap fruit sorbets. You deserve treats.
Hi Sarah
I'm 35 and was treated for cervical cancer in 2016. I started to develop side effects in 2017 starting with bowel symptoms and was told I have radiation colitis, I developed lymphoedema in my left abdomen and leg and by the end of 2017 I was having monthly hospital admissions for kidney infections and sepsis. I also developed pancytopenia which is caused by bone marrow failure after treatment. In March 2018 I had gone into kidney failure and had bilateral nephrostomys which did improve things slightly but I had a urostomy in July 2018 which has thankfully stopped the infections. The infections have left permanent damage to my kidneys but am thankfully stable currently.
Good to have somewhere people have similar experiences
Welcome to the group and thank you for sharing your story Greeny85 .
I had bilateral nephrostomies and now have a Urostomy! I’ve not met anyone who had bilateral nephrostomies from PRD before.
I was pretty much in hospital every other week with infections until I got my Urostomy, I have CKD as well but like you it’s now stable.
Hi I hadn't met anyone with this either, glad I have found this forum.
My CKD is stage 3 and there is discussion currently about removing my left kidney as I get a lot of pain and it's only working 14% but I feel a bit reluctant for more surgery when I'm doing ok now.
Hope your well
Hello all
I'm 63 and had a radical hysterectomy followed by chemo-radiotherapy for cervical cancer in 2017. The long term side effects of my treatment include urinary retention (which I manage with intermittent self catheterisation - ISC), urinary frequency, urinary stress incontinence, bowel incontinence and occasional rectal bleeding. I have had 10 urinary tract infections since my treatment. Also I developed unilateral lymphoedema, extending from my right abdomen through to my toes, for which I wear a fairly high compression stocking plus toe caps.
I retired from my full time job, earlier than planned, because of all the long term side effects of my cc treatment. So pleased to have this way of sharing experiences with other people.
Welcome to the community Perido and thank you for sharing your story with us.
Hi Sarah ! Thank you for inviting me to join . My name is Sally .
I've been hovering in the background for a couple of years now , and really appreciated all the information on your website .
My history is treatment of endometrial cancer grade 2 ( on the biopsy hot spot ) and grade 1 elsewhere , stage 1B in 2016 , at age 66 .
Surgery and adjuvant external radiotherapy and brachytherapy .
Fast forward a couple of years !
Sacral insufficiency fractures and one episode of heamaturia later , all resolved now .
For the last few weeks , lots of wind , rumbly gut and pain , off and on , mainly lower right abdomen , sometimes lower left , across the middle and in the corners under my ribs .
Waiting for an MRI to rule out anything else , my lovely specialist nurse thinks that it sounds like radiation damage .
I feel as though that's what it is , but the gremlin on my shoulder pops his ugly head up now and again with a what if ! As usual until the scan results are back .
Really looking forward to being part of this community , and wishing everyone well in the strange times we find ourselves in .
Kindest regards !
Welcome to the community Sally, thank you for sharing your story. I'm really glad you've found our website informative.
It's great that your insufficiency fractures and haematuria are now resolved. It's only natural to have those thoughts at times, hopefully your results wont take too long and will silence the little gremlin.
Please do join that chat and feel free to post or ask a question in the community.
Thank you !
HIya everyone;
I'm Rose, 41 and I have the same problem :(. I had a rare endo-cervical cancer in 2008-09 and my bowel problems have just gotten steadily worse; most notably in the last 3 years.
I used to be able to control it with a careful diet but now it doesn't matter what I eat, I'll get attacks of diarrhoea, cramping and urgency for no reason at all; sometimes just from eating anything 
.
It's extremely frustrating! It starts to affect all aspects of your life worrying about your damn bowels all the time. I'm a competitive Horse rider, work outdoors, and enjoy hiking and all sorts of outdoor pursuits (though not much during lockdown! lol ), but this really gets in the way :(.
I have discussed these issues with a few other people who have similar problems (in other online 'cancer groups'), but have never really found anyone who's been able to fully address this problem! Is there no way we can fix this?? :/
Has anyone really been able to avoid the daily diarrhoea, urgency, crampy pain and wind from this condition and move on with their life?? 
Hi RoseTyler
Welcome to the group and thank you for sharing your experience. I imagine it must be a real struggle trying to manage your bowel symptoms with such an active lifestyle.
We have information on our website that you may find useful: prda.org.uk/pelvic-radiatio...
Have you ever been referred to a specialist gastroenterologist who understands PRD?
I've seen the PRDA website yonks ago and that's what put me onto this Group ;). Thanks anyway.
Re. being referred to a specialist: I was meant to go to a "late effects of Radiotherapy" programme at my local Hospital this Spring, but of course now due to the poxy Covid 19 pandemic, that's been scuppered.
Even though Lockdown has been eased, I'm quite wary about going to Hospital with this virus still about!
Oh no, sorry your plans were scuppered 🙁 hopefully when things are safer they will follow up with you.
Definitely see a gastro who has an interest in PRD. Many people who have had pelvic radiation have bile acid diarrhoea which can be helped with certain meds. There sore also other conditions that can be caused by pelvic radiation so definitely get it checked out if you haven’t or get a second opinion if you haven’t had answers xx
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GREAT NEWS AT LAST
Loperamide oral (liquid) discontinued !
