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Tenesmus after radiotherapy

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User
Posted 06 Dec 2023 at 13:03

My husband completed RT at end of March but since October has had nocturia up to 5 times a night. The frequency of urination has increased during the day with the sensation to empty his bowels at the same time although it doesn’t happen. He feels so uncomfortable most of the time that he’s now unable to carry on his everyday activities. Looking up his symptoms on line brought up tenesmus which are his exact symptoms. Has anyone else had this and can you please share your experience of medication/type of support offered. 
Thank you. 
JH

User
Posted 06 Dec 2023 at 21:18

Has he discussed this with his oncologist?  RT frequently causes damage to the rectum which can lead to feeling the need to go with extreme urgency, with very little warning.  With me it started about three to four months after I'd finished RT and carried on for the next year or so before gradually getting better.  Imodium can help especially if your husband is concerned about being away from a toilet for any length of time when out.  As I said it does get better with time. 

Similarly radiation damage to the bladder can also cause "radiation cystitis" one of the symptoms of which can be the need to pass urine urgently.  These are quite common problems due to the close proximity of the bits concerned to the prostate!  They do their best with EBRT to avoid collateral damage but it's not always possible unfortunately.  As for the nocturia, I still get up three times a night and my RT finished over three years ago.  Best to discuss all this with the doctor.  They may suggest a cystoscopy to check out his urethra and bladder.  They may also suggest putting him on Tamsulosin to see if that helps.  Good luck!

User
Posted 08 Dec 2023 at 01:34

Yes, I had it during and just after RT, but only quite mildly. It's common during RT.

It seems a bit late in this case though, and should be investigated. I'm wondering if he might have prosatitis.

User
Posted 08 Dec 2023 at 07:04

Hi - I finished RT 9 months ago and HT 7 months ago. Started getting urgency to wee and poo incontinence. After wee and stool tests found blood in stool and started getting visible blood and mucus in stool. Sent for Colonoscopy and diagnosed with Radiation Proctitis. Awaiting follow up for treatment options. Not nice side effects but seems to occur in up to 20% of RT treatments for Prostate

User
Posted 23 Dec 2023 at 07:10
Thank you all for your really helpful responses. We’ve spoken to our oncologist now who has prescribed Prednisolone suppositories for 12 days. She is organising a colonoscopy to determine a diagnosis so waiting for that. He has had a cytoscopy which showed radiation damage in the bladder but the meds prescribed have not helped. My husband has an appointment with urology on 28th Jan. At least he now knows others have had these side effects. The main thing for him is how uncomfortable he feels a lot of the time and the fact he cannot carrying on his everyday life - not going out/socialising so stuck indoors and also doesn’t want to have friends/family over.

In the big scheme of things he knows how lucky he is to have had treatment relatively quickly and his psa results are very good. I’m trying to encourage him to meet up with friends without being too pushy. 😅

Keeping our fingers crossed these side effects will subside in the next few months. Thank you all again for sharing your experiences and hope you all have a happy Christmas. Will post updates as we progress.

User
Posted 23 Dec 2023 at 07:37

JH , salvage RT resulted in severe radiation cystitis to my bladder. By the time it was diagnosed my bladder was beyond help. Make sure you are being looked after by someone who understands radiation damage. My symptoms were passing lots and blood clots,debris , tissue and some blood. 

I tried some sessions of hyperbaric oxygen treatment but it was too late for me. There is a charity called the pelvic radiation disease association, they recommend a couple of consultants to see.

Thanks Chris 

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User
Posted 06 Dec 2023 at 21:18

Has he discussed this with his oncologist?  RT frequently causes damage to the rectum which can lead to feeling the need to go with extreme urgency, with very little warning.  With me it started about three to four months after I'd finished RT and carried on for the next year or so before gradually getting better.  Imodium can help especially if your husband is concerned about being away from a toilet for any length of time when out.  As I said it does get better with time. 

Similarly radiation damage to the bladder can also cause "radiation cystitis" one of the symptoms of which can be the need to pass urine urgently.  These are quite common problems due to the close proximity of the bits concerned to the prostate!  They do their best with EBRT to avoid collateral damage but it's not always possible unfortunately.  As for the nocturia, I still get up three times a night and my RT finished over three years ago.  Best to discuss all this with the doctor.  They may suggest a cystoscopy to check out his urethra and bladder.  They may also suggest putting him on Tamsulosin to see if that helps.  Good luck!

User
Posted 08 Dec 2023 at 01:34

Yes, I had it during and just after RT, but only quite mildly. It's common during RT.

It seems a bit late in this case though, and should be investigated. I'm wondering if he might have prosatitis.

User
Posted 08 Dec 2023 at 07:04

Hi - I finished RT 9 months ago and HT 7 months ago. Started getting urgency to wee and poo incontinence. After wee and stool tests found blood in stool and started getting visible blood and mucus in stool. Sent for Colonoscopy and diagnosed with Radiation Proctitis. Awaiting follow up for treatment options. Not nice side effects but seems to occur in up to 20% of RT treatments for Prostate

User
Posted 23 Dec 2023 at 07:10
Thank you all for your really helpful responses. We’ve spoken to our oncologist now who has prescribed Prednisolone suppositories for 12 days. She is organising a colonoscopy to determine a diagnosis so waiting for that. He has had a cytoscopy which showed radiation damage in the bladder but the meds prescribed have not helped. My husband has an appointment with urology on 28th Jan. At least he now knows others have had these side effects. The main thing for him is how uncomfortable he feels a lot of the time and the fact he cannot carrying on his everyday life - not going out/socialising so stuck indoors and also doesn’t want to have friends/family over.

In the big scheme of things he knows how lucky he is to have had treatment relatively quickly and his psa results are very good. I’m trying to encourage him to meet up with friends without being too pushy. 😅

Keeping our fingers crossed these side effects will subside in the next few months. Thank you all again for sharing your experiences and hope you all have a happy Christmas. Will post updates as we progress.

User
Posted 23 Dec 2023 at 07:37

JH , salvage RT resulted in severe radiation cystitis to my bladder. By the time it was diagnosed my bladder was beyond help. Make sure you are being looked after by someone who understands radiation damage. My symptoms were passing lots and blood clots,debris , tissue and some blood. 

I tried some sessions of hyperbaric oxygen treatment but it was too late for me. There is a charity called the pelvic radiation disease association, they recommend a couple of consultants to see.

Thanks Chris 

 
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