I received a call on Thursday from the local Late Side Effects clinic. They have given me an appointment 19th December 2023. I am so happy and blown away by the speed and the response. I’m quite overwhelmed really. Feels like I’m reaching the end of all my research and chasing. Such a happy bunny.
My advice to you all is never give up. Tomorrow will always be a better day.
Thank you so much to all of the members and the team that help to run this site. You are angels. I will of course keep you posted 🌞
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briarsw
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Hiya, well ya know good days, bad days & worse days 🙃 I'm just waiting for my referral to an 'ordinary' pain Clinic. Think they said the waiting time was 8 months & I'm not holding out much hope they will be of any good. I had a really bad few days a couple of weeks ago & to cut a long story short really felt that I had to get in touch with GP so ya can understand how bad I was. The night before the GP called me back, the pain had subsided (after 12 Buscopan!). Anyway I told the idiot what the Pain had been like & how long it took to settle. His answer, 'Had I heard of a Podcast called Zoe about good gut health?'. My reply, 'Have you heard of Pelvic Radiation Disease?' He said he would send me out more Buscopan! Hadn't a clue & obviously didn't even bother to bring up my Medical Notes on his screen 🙄😡😡
Hi Maddie I am new on here. I had treatment in 2006. The pain you suffer I have suffered.
Please see a gastroenterologist and ask to trial octasa 3.2g daily it's an anti inflammatory drug that works specifically on the bowel. Only if kidney function is OK.
I use this and my pain is so much better after years of agonising pain.
I need to find a specialist for the urgency and frequency as no specialist understands completely.
Hi CS, welcome to the online community! It really helps to see how others are doing & what help they are getting, or not getting! Thank you for your advice, it's better than listening to a Podcast!!! I literally have no-one looking after me & never really have from a medical point of view. The Consultant gastroenterologist that I have seen & has done my Colonoscopies, I've had to see privately. He told me not to touch any anti-inflammatory tablets such as Brufen as it can make things a lot worse. I see that you say the octasa is specifically for the Bowel. Why the hell could he not have told me that??? 😡 Honestly at the minute I am just so fed up with everything. I'm so tired of having to fight for every little thing for 25 flipping years. Sorry for rant, just feeling down today. Was on loo for over an hr last night & half an hour this afternoon and I'm in a lot of pain. Is it only a gastroenterologist that can prescribe that Medication or can a GP do it do you know?
You said you needed to find a Specialist for the urgency & frequency. I take it you're talking about the Bowel. Have you heard about Late Effects Clinics? I don't know where you live but there are a few in England (I'm in Northern Ireland). Some of them do Consultations on-line.
If you contact MacMillan Cancer Services, the nurses are great & can sign post you to the relevant People. Try giving them a ring sure & ya never know what they can come up with No. 0808 8080 000 8am-8pm Monday-Sunday. You can even look on their Website for Late Effects Clinics.
I hope, if you do contact them that you get some direction & help, it will be a start anyway.
I've spoke to Lisa Durrant in Taunton however I live in Durham there are no services at all noone knows what pelvic radiation disease is never mind how to treat. I'm so fed up of being told to do the diet I can't flipping eat for days when my bowel kicks off, and to be Frank using the loo at the side of the road is past my embarrassing side being caught short and pulling Iver to use a carrier bag is not nice at all but what is the alternative with no loo in the car or anywhere nearby!!! 😐 GP and consultants referring to it as IBS just infuriates me with their ignorance!!!!
I am Durham as well. Finished treatment for stage 3 cervical cancer in Sept 2021. Have had debilitating bowel issues for the last almost 2 years. Not getting very far with my gastro consultant at the RVI or my Oncologist at the Freeman. Virtually housebound except for the odd 10 mins to the shop or to my daughter who lives around the corner. Told us n no uncertain terms there are no late effects clinics in the area and if there was I would still be visiting 4 different clinics!! I am so fed up of the whole thing
I have been told to get gp to refer me to a virtual clinic at Bath, or St Marks in London, I've spoke to a consultant radiographer from Somerset Taunton who advised me her name was Lisa Durrant I found her on Macmillan. What meds do you take at the minute and what have you tried and failed with?
I'm 18 years post but leaving the house is a must as I still have to work.
Hopefully a few voices coming together in Durham can get louder if we find more people that need help 🙏
Hi thanks for the quick reply. No meds at the minute other than the usual folic acid, iron tablets and vitamin D. I am having 4 monthly purastat treatment at the RVI to try and stop the rectal bleeding but that is actually the least of my worries. I had radiotherapy to my para atopic lymph nodes so my stomach is just 1 big mess. I apparently have adhesions that mean I vomit with no warning and can literally sit on the loo for hours at a time. I am fortunate that I work from home and have a very understanding employer but it’s really the chronic fatigue that’s is affecting me the most. Back for purastat next week after it being rearranged due to the consultants strike. Having to seriously think about going part time but no way can I afford it. Hope you are as well as can be expected
Hi sorry for the late reply just getting used to how the messages work I'm not great with IT lol.Ask for a referral to St Marks I spoke to the late effect consultant Lisa Durrant she was amazing gave me so much info, said St Marks is the centre for excellence for radiotherapy to the pelvis and would be able to help.
Hi i emailed Lisa and she replied re a referral but did advise although i can self refer i probably need confirmation from my GP/Consultant that there is no other explanation for my symptoms. Going to get on this after Christmas, thanks for the heads up
Great news I hope you get to see her, she was lovely with me over the phone unfortunately I live too far away to see her for help. Lisa advised me to go to St Marks I'm trying with the gp to refer me fingers crossed xx
no I won’t be seeing her, the wrong end of the country for me. Will see if I can get a referal to st marks though but not counting my chickens. My NHS support has been woeful at best so far
Mine too I'm looking for something written by NICE or WHO but as there is little to nothing known about PRD we need to stand up and shout our corner and demand better care. If we lived closer to available clinics it wouldn't be a problem!!! Again postcode lottery.
I, too struggle with the urgency and frequency the most! I take daily Loperamide (else I can't eat! ), but even if I don't get the diarrhoea, I still have to rush to the Loo and go several times a day! Diarrhoea might be reduced, but otherwise it's not much help, really! 🙄 I need a solution! Bloody PRD 😖.
Simple questions 1st. Was Lisa a MacMillan nurse? Have you asked the PRDA for the Out & About Toolkit? It comes with a bag to hold the stuff in but I bought a proper Backpack & it has everything in it that I could possible need should an accident happen. Toilet roll, pampers wipes, change of pads, underwear, bottoms, plenty of plastic bags etc I never leave the house without it. It kinda gives me a little piece of mind. The leaflet that comes with it explains a bit about PRD. I have printed a few of these leaflets & carry them in my Bag too. For anyone who doesn't understand I give them a leaflet & ask them to look at the PRD Website. Is your GP or any GP in your practice approachable to make an appointment with & take Info on PRD with you to discuss it? I have decided to take the pro-active approach where I can. I had a Hos apt Oct. I rang the department in advance, told them I had Pelvic Radiation Disease which means that I cannot sit or stand for too long & have Bowel Incontinence. Basically explained it very simply to them. Well, I couldn't believe it. I was called in 1st & treated so well. I think it's because they don't really know about it plus they don't want anyone having an accident during the apt!!!😃 So if you have to go s'where that you can do this in advance then do that. I have been having an horrendous time this week. Nothing but nothing will stay in, not even a cup of tea. I'm exhausted & in agony. To make matters worse I had a telephone Assessment for PIP on Thurs morn. (I didn't even know that I might be entitled to it. It was my Mental Health Support Worker who could not believe that I wasn't on it) I'm sure I did terribly because I was in so much pain. The call lasted 1hr 58mins!!!!!! I said at the beginning that I may need to break for the toilet which they were fine with but thank God I got through it. Whatever will be will be. I wish I could help you more CS but you're not alone. Do you take Co-Codamol 30/500 btw, I'm on 8 a day. Stay in touch. Lots of Love ♥️♥️
Thanks so much for replying, yes I have taken co codamol. My car is always fully prepared for my accidents when I need it toilet rolls wipes carrier bags change of clothes. Work colleagues are fully aware when I am not well I'm quite vocal about my problem. I usually put on the brave face but have had the worst flares lost weight which I can afford to do as I am a fatty, but its when my family are upset as I hide my pain from them.
I hate being unwell or not able to go out I know I won't be able to work one day but I'm trying my hardest to stay at work.
Pip is something I've been told to access and a blue badge I am desperate for.
Someone named Lara thankyou so much for the bath details I will ask today when I speak to the gp.
I have to start educating them or I will never get any help at all xxx
I just want to say I feel your pain! I didn't take enough Loperamide the day before yesterday and then spent most of yesterday in the Loo; I went 13 times in less than 8 hours. WTF?! Gah! How can we live like this? >
I forgot to say Lisa is the consultant radiographer from Somerset Taunton where she carries out late effects radiotherapy clinic Why have they not got help for north east!!!
Hope your appointment goes well. My appointment for the Late Effects clinic is for the 22nd December. Apparently this service has only been set up recently where I am, which is lucky for me - but is only initially for a 2 year period, I think.
It'll be interesting to see what the outcome is for me.
Had my first Late Side Effects Appointment on Tuesday with a senior radiographer an oncologist and a nurse. They were so nice and welcoming and spoke with me rather than at me. I filled in a few forms about what I eat and drink over a week and how my bowels and bladder reacted. They had all my hospital notes from my cancer treatment to date and knew about different hospitals and doctors I have seen during that time. They let me talk and they listened.
I left with a plan of action and know what tests I’ll be having as well as mine and their expectations.
I will have 2 nuclear PET scans a week apart to check on the function of my bowel. I will have to give various poo samples over a week or two. These will be carried out some time in the New Year.
I will stay under my Urologist as I’m receiving treatment and awaiting a CT scan. However they have recommended I start Hiprex (as a bladder cleaner) to coincide with the Aluril treatment and the intermittent self catheterisation that I now do.
I cannot tell you how emotional the appointment made me. I was in there for just over an hour and they far exceeded my expectations. To say I am relieved is an understatement. Simply because they have been honest and sincere about what to expect. I am able to communicate directly with the nurse (an angel in uniform) and it is likely, they told me, that all things being equal I can expect to massively improve my quality of life.
Essentially the bowel has been damaged (and in my case my bladder too) by the radiation. The diagnosis is definitely PRD. They advised me that as more people survive cancer the more of these clinics they expect to see appearing certainly in the UK.
Finally, there is hope for all of us but we need to keep shouting from our towers loud and clear. They will listen and ultimately I think that radiotherapy will advance so that they can minimise the late side effects.
I can’t believe how this website has helped me personally and I thank the charity and this community for all your help. I will of course stay as a member and continue to update you all with my progress as and when.
I wish you all a very Merry Christmas and Happy New Year and hope you all manage to enjoy this special time with your nearest and dearest family and friends 🎄🇨🇽🎅🏻🌞💝
I had a good experience at my appointment at the Late Effects clinic in Torbay Hospital too - this is linked to the clinic in Taunton and there are several others being trialled in the South West area apparently.
Most importantly I was listened to, and, although I don't have the serious life-changing side effects that many of you describe, I felt the problems I experience were appreciated.
Although I only had mild level radiotherapy the symptoms of numbness and tingling in the base of my spine may be due to something called lumbar plexopathy (I think) My case was to be discussed at a case review meeting before future options are decided.
Felt there was a way forward and that my condition had finally been acknowledged. Let's see what happens next!
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), but even if I don't get the diarrhoea, I still have to rush to the Loo and go several times a day! Diarrhoea might be reduced, but otherwise it's not much help, really! 🙄 I need a solution! Bloody PRD 😖.
Chronic Radiation Enteritis Sufferer
Fatigue - bowel issues
Radiation Enteritis - I feel very alone
New to here but not new to symptoms
