hi I am 54 years old

[winnieBagelAggy]

hi I am a 54 year old woman , diagnosed with cervical cancer in 2015, completed radiotherapy, chemotherapy along with brachytherapy… since then I have struggled through life with bladder problem , bowel problems, bone density problems, pelvic chronic pain, libido issues …. When ever I mention PRD to my gp practise they always say they have never heard of it …. Why is this not more invested in I’m sure I’m not the only one who has ever mentioned it to their gp , I’m at a loss

[Coag940]

Hi I completely get were you are coming from, I was discharged last Tuesday the last of my 5 year check ups and they don’t listen. I’m in constant pain, tummy issues, frequent bowel movements and pain when peeing (no infection detected) my gp just refers me to my consultant they just say all heals within a year and it doesn’t my has go worse over the past 5 years. Now that I am discharged I feel alone with this and they just make me feel like I’m making it up. I’m 53 and it hurts to walk to do anything, I have found comfort in this forum knowing now that I’m not alone and it is real.

[DarceyD]

I have experienced lots of differing reactions from gp’s over the years. Having moved around a lot it seems I just about ‘educate’ a gp and they leave or I do. Then it is back to the beginning. There is more awareness but i think the more we can share the prda clinical pathway the better it will get. GPs will usually do tests to reassure you that can er hasn’t returned but not then go the extra step into looking at symptom treatment. You arent alone.

[accidentalcarnivore]

Hi I was 53 when i was treated for stage 2b cc. That was 17 years ago. I have had similar experiences with GP's and oncology. There is very little that the medical world can do for radiation damage to the pelvis. I am used to being the educator when i go to see doctors. I had asked for hyperbaric oxygen tx but the oncologist laughed at me. He was a crusty old fart. Since that time, the treatment has become more recognized and used with some success I believe. It isn't useful for me apparently as it is too late. I am glad you found this site. it is helpful to know you are not alone. I am one of the few who never had surgery just the brachy, external rad and chemo. But surgery is the only solution offered and always with a caveat that there will be unpredictable complications and so i don't want to risk it. I wish you well

[technobabe in reply to accidentalcarnivore]

I am similar history to you. I had hyperbaric treatment over 20 years after treatment to hopefully help with blood in urine. At first I didn't think anything changed but I've never had bleeding again (for last 12 years). It may be worth it. I am in western australia. I didn't pay anything for it. Best wishes.

[Sunflower1976 in reply to accidentalcarnivore]

Hi There,

You are many years ahead of me but we have been treated for exactly the same condition. It’s great to hear you are soo far along and doing somewhat ok. Treatment for me ended in September last year my side effects on my bowels and bladder have been severe and not easing even a little. My diarrhoea is almost daily and when not it hurts so bad that I end up bleeding. I’ve had accidents in and out of the house and I am just exhausted this week with it all! It’s good to hear that I am not along as I have been feeling very alone. Thanks for your post it’s given me a little boost xx

[divvykev]

Oh tell me about it. My GP would send me for some "fresh bloods" every time I tried to get somewhere. In the end I went via social media to my local cancer centre and was eventually directed to a late effects specialist at Clatterbridge who listened, explained and gave me simple meds that help so much. Even the nurse I saw at the DWP had more knowledge of PRD.

[JDKPA in reply to divvykev]

what meds do you take? For what symptoms? thanks

[divvykev in reply to JDKPA]

Hi there

I take pregabalin (recently up to 50mg) twice a day for the nerve pain I get running through my legs and Colpermin (peppermint capsules) for my stoma ballooning at night.

I struggle with fatigue which I manage by keeping things in balance. Too little activity and I get lethargic and too much I get all achey and fatigued.

[JDKPA]

What are the meds for? What symptom? Thanks

[RoseTyler]

I am 45 and had a rare endo-cervical adenocarcinoma in 2008-09. PRD problems started around 2017-18. Your GP is just thick and just because they'd never heard of something doesn't mean it doesn't exist! They should take your symptoms more seriously. That being said, there's not much a GP can do. My GP is useless when it comes to any of my 'post-cancer' side effects!

My PRD is a huge pain in the arse (literally!) but I generally manage it myself; Loperamide, restrictive diet, being near a Loo etc., but unfortunately, it never goes away, and we are left to deal with this shit should we be lucky enough to survive cancer! Good luck! x

[Corey19]

I'm three years out from the same treatment as you with all the same problems and I've felt very alone. The last consultant told me there was nothing more they could do but I've started oxygen therapy locally and have asked for a referral to the nearest late effects clinic, so I've not given up yet although 4 months later I'm still waiting to hear from the clinic. It's worth finding out if there's a late effects clinic near you, mine is a three hour drive away but if they can help it would be worth it.

[winnieBagelAggy in reply to Corey19]

I am going to look into the late effects clinic , thank you . I’m so tired of all medical staff not having any idea about PRDA, it’s so frustrating and upsetting being looked at like I’m going mad