Long time PRD sufferer.

[Tel76]

Hi all. Let me introduce myself. My names Terry, I live in larne, Northern Ireland. 47 year old long time sufferer from the late affects of Pelvic radiation.

Back in 1979 I had a rare cancer in my bladder, as a result I had chemotherapy and radiation therapy and had my bladder removed. As a result I've had a urostomy bag for best part of 45 years! (This does not bother me at all its part of me 😀).

Since then I've been admitted to hospital for numerous problems. I've had a kidney removed, part of my bowel removed. A testical removed😅. Was diagnosed with osteomyelitis over 10 years ago. (Came out as an abcess and was very ill). Was treated in hospital with longterm IV antibiotics. Within the past few years I've been having fistulas recurring quite often and putting me back in hospital. Various other problems throughout my life. ( I could write a book lol).

October last year I finally got diagnosed with PRD. This took years to get, it was me who suggested to my doctors that I might have this!

I suffer really bad with my bowel. Imagine a 10 being the worst, well am about a 15! Gradually it's gotten worse over the years, but now it has completely taking over my life. My whole life has changed for the worse. Up until last January I was a hardworking successful chef. I've always held a job since I left school, never claimed benefits in my life! Now I've had to leave my job which I loved and live of the state. And I hate it! 😒

Over this past few months am now getting severe pain in my right leg and hip. This can be excruciating and is really affecting my mobility. From a recent MRI scan I had it shows I've got osteoarthritis in both hips.

As you can imagine this is all becoming increasingly hard to deal with. I've been told that most of my problems have come from the radiotherapy.

The issue I now have is that because of where I live I don't have access to a PRD specialist ( Closest one is in Glasgow). I would loved to know has anyone had or got similar symptoms as myself. Any suggestions on who I could talk to about my PRD. My doctors seem to be all scratching their heads!

Thanks for listening folks and look forward to any response.

Terry. 👨‍🍳

[Jimbo65]

Hi Tel76, my goodness you've been through it haven't you. How amazing that you've held down a job throughout it all and now PRD has literally bitten you on the bum! It took me many years to get my issues linked to PRD. I have a hip replacement and knee osteoarthritis everywhere. Bladder and bowel issues but nothing compares to what you've been through. I'm wondering if you can find a late affects clinic and see if they could do a WhatsApp or zoom appointment with you. It's only in the last 10 yrs or so that science has realised the extent of radiation and chemo causing damage and side effects that need addressing. As radiation deteriorates bone its highly likely that's increased your hips to deteriorate. You need to get physio, exercises and pain relief whilst you wait fur hip replacements. I used a tens machine on my hip that definitely helped and got referred to use a hydrotherapy pool in my nearest town. I really hope you can find some relief from the pain and that you also find a late effects clinic who will be able to help with bowel issues. I take imodeum every day, wear protective pants, such a joy, not! And have a rada key for public loos. I take a change of clothes everywhere. We have to keep on getting out and about as much as we can. Good luck with everything and I really hope you get some support. Best wishes,

[Sheebz]

Hi Terry . I sorry that your life has changed so much . You must feel really frustrated having coped with everything that prd has thrown at you over the 40 odd years .

I am 40 yrs down the line following Radiotherapy after Cervical Cancer and internal chemo due to a tumour in my vagina ..I’ve had the usual bowel problems blocked ureter affecting my kidney function spine knee and now hip Osteo arthritis etc etc

I’ve never been referred to a specialist for PRD I’m interested in your comment on the nearest being in Glasgow . Which Hospital ? I wish I could give you some advice but sadly we are all left to get on with it . I hope you get some answers soon

Kind regards

Sheena

[Dustyangel]

Hi Terry,Thank you for sharing, it certainly hasn't been easy for you. I'm almost 5 years out, was diagnosed in Aug 2019 with CC at the age of 45, my prd started almost immediately in Jan 2020! Some consultants wouldn't say it was prd but now a few years down the line it definitely is. Been for scans etc, I have osteoarthritis in my lower back and both hips and my knees are knackered, numerous pelvic insufficiency fractures along with the bowel and bladder issues, fatigue, brain fog and early menopause due to the treatment. I aslo had to give up my job of a carer in the community a job I loved but could not manage it when I did return to work. lucky for me a person in the office was retiring so I'm now an office person doing admin and other stuff won't bore you with that! I seriously don't know what I would be doing if I didn't get the office job. I have close access to a toilet and I can get up and wander about, sitting is as painful as standing/walking . I've spoken to my GP all pretty sympathetic but nothing much else apart from increase in pain medication, which I'm not willing as I still need to function and be able to try and think straight! Some days quite hard expecially when tired. This is a great place to get advice from, and I feel people listen as we are all in the same position and others do understand where we are comming from.

Take care

Nikki.

[maddie_1234]

Hi Terry,

I read your profile & wanted to reach out. You can read my Profile rather than me rattling it off to you. You've been through so much it would be so hard to know what could be causing your right leg & hip pain other than perhaps the Oesteoarthritis. I have relatives who experience pain down their leg when they are in need of a hip replacement. A lot of complex nerves at work there. Can I ask, was the removal of your Kidney, part of your Bowel & your testical Cancer related? I know that from any Major Surgery we are left with scar tissue which can be just as painful, sometimes more than the original problem. I assume you are talking about Anal Fistulas. You poor thing. I had a perianal abcess years ago, had surgery but it was the leaving it open & packing it. I wil never forget it!!!! I'm wondering if this is due to the Bowel problems. You said you are in agony & I can empathise with you there. Do you have Bowel Incontinence like myself? Do you get constipated? What sort of pain meds are you on? The right ones should be the likes of Gabapentin for nerve pain & Co-Codamol if you find you can't eat but everything is running through you. I'm on 1800mg Gabapentin a day & 8 Co-Codamol 30/500 for the pain & to try to stop the running to the loo. If you're on the likes of Morphine, you're on the WRONG MEDS. Sounds like you need to get to a Gastroenterologist about the pain & get it investigated in case there is something else/new going on. I can give you the No for MacMillan Cancer in Belfast. They have nurses that can talk to you about PRD. I did ring 1 day but the other phone rang in the house & I had to hang-up while I was waiting to get through. I haven't phoned them back again, yet. Their No: 0808 8080 000 Choose Option 1 then Option 3. At least it's a start & we all gotta start somewhere. We all have to fight these bloody battles by ourselves. My GP is as useless as most. I asked to get referred to a Pain Clinic in Oct. They did refer me, the waiting list is 8 months & they don't specialize in PRD so I know it's gonna be a waste of time! Just before I go, it may sound simple but it has helped me with my pain so much......I bought an electric waistband heater from Amazon & have it on me all day. The heat helps blood circulation which helps to reduce pain. It's the best thing I've bought in months!

Good luck & I'm thinking of you. xxx

[Tel76]

Hi all. Thanks for your kind words and advice. It's nice to know I'm not alone!Rather reply individually I'll just do it here.🙂

As recently as 2 weeks ago had the camera test up the back passage( my 4th in 2 years😥).

They found nothing sinister, took some biopsies, so I'm due back up to see my consultant at the Royal Victoria hospital in 4 weeks time.

Yes I have the constant running to the toilet. Suffer really bad with anal fissures. The pain frm this is so bad it keeps me up all night. Some nights am lucky to get 5 hours sleep. My fistula was not anal. It came out off an old scar from previous surgery. I took the osteomyelitis in my pelvis 10 years ago which for the first year I was really ill. I was put on long term antibiotics. Trimethaprem(probably not correct spelling😆). Only stopped taking them last year as I was lost in the system and not seen by my infectious disease doctor for nearly 4 years! (Whole other story!!).

I've seen so many doctors over the years I've lost count.

With regards to where the PRD specialist in Glasgow is am not sure. Seen it somewhere so I'll get back to you on that.

I myself have got the PRD tool kit which has came in very hand. Radar key has been a god send as I tend to only really go out at night with my dogs to the park.

As to my past surgeries none where cancer related thank god 🙏. I don't take any meds now, only imodiom and pain killers and various different creams for my bum. There's quite alot of stuff I can't take meds wise.

Try my best to stick to a low residue diet. Honestly it's been going on that long now I'm becoming immune to it all. I've always had quite a good pain threshold because of my past but lately things have become really tough, but we need to just BULL ON as I like to say 😆💪.

Anyway enough me rattling on thanks again for listening and maybe hear from you soon .

Take care folks

[Vailgirl]

oh man, you’ve been through a lot! I’m so sorry for your pain and it sounds like you’ve been a trooper. I had anal cancer 17 years ago and also have PRD - although its not really even recognized in the states yet Two years ago I began having hip pain to the point where i could barely walk. ( ( Im a yoga teacher and was a dancer before that so…). Anyway after trying PT and working on it myself, i finally had an MRI ( i would recommend this) and I had 4 torn muscles, tendonitis, bursitis, labreal tear and changes in the bones and bone marrow All due to radiation damage. I cannot stretch anymore or things just tear. I can walk again and have to do strengthening exercises daily. I do have pain still but its bearable. They thought it was bone cancer but its not - although they want to keep an eye on it. What I have found is that the only thing to do is keep the surrounding muscles as strong as possible. I hope this helps and I send you healing light.