Radiation Cystitis - any tips? - Start here! - Prostate Cancer UK Online Community

User

Posted 21 Jul 2023 at 10:34

I am just looking for some tips on how to deal with what appears to be radiation cystitis.

I had HDR brachytherapy plus external beam radiotherapy in May and June of 2022 followed by hormone treatment (Prostap) until early 2023.

PSA scores are promising so far.

However I started experiencing a burning pain on weeing from about April of this year and while not excruciating has become the norm for me now. I have had infections ruled out and am pretty sure that it is radiation cystitis and the last consultant I saw in June agreed that this was probably so.

I also get frequent desires to urinate (any running tap sets me off!) and the burning pain lingers for about a minute after weeing. I have occasionally started weeing a second before I get there but am generally just about ok with that.

So....I just wondered if anybody had any advice for me. I haven't done pelvic floor muscle exercises but am thinking that these might help with control in the future. As for the burning pain I have had various friends recommending cranberry juice or some sachets or other or D-Mannose but I wonder whether most of those are more suited to cystitis/urethritis due to infections whereas mine is definitely not that.

Thanks in advance L J

User

Posted 22 Jul 2023 at 09:05

Thanks for your replies. I will hunt down some quality cranberry juice today!

I have read about the more serious cystitis with blood in the urine etc but thankfully mine is not that type.

L J

User

Posted 24 Jul 2023 at 18:17

Look up the pelvic radiation disease association website. They were very helpful to me. They have a list of specialists in various places around England should you need to see one.

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User

Posted 21 Jul 2023 at 14:22

Cranberry juice is great for radiation cystitis but it needs to be pure juice, not the cheaper 'from concentrate' versions. If you can find frozen cranberries at the supermarket, these can be blended easily to make a nice juice.

Have you tried cutting out all caffeine and alcohol?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Jul 2023 at 08:35

LJ, if you ever start passing large amounts of blood, tissue,debris or blood clots, make sure you are seen by someone who understands radiation cystitis. Quite rare but I had stage 4 radiation cystitis after salvage RT and my bladder is permanently affected. Again that level is quite rare, which is probably why it wasn't recognised.

Give the cranberry juice a try. There are certain infusions that can be put into the bladder if really needed. As always if in doubt seek medical advice.

Thanks Chris

User

Posted 22 Jul 2023 at 09:05

Thanks for your replies. I will hunt down some quality cranberry juice today!

I have read about the more serious cystitis with blood in the urine etc but thankfully mine is not that type.

L J

User

Posted 22 Jul 2023 at 10:44

Originally Posted by: Online Community Member

Cranberry juice is great for radiation cystitis but it needs to be pure juice, not the cheaper 'from concentrate' versions.

The Ocean Spray cranberry juices contain about 80mg of proanthocyanidins per glass. (These are the chemicals which prevent bacteria sticking in the bladder and urethra, so you pee them out.) Beneficial effect starts to be observed from about half this dose. Yes, these are geared more to bacterial cystitis, but I would try it anyway. Go for the sugar-free one, because excess sugar can also contribute to cystitis, and cranberries contain lots of sugar.

User

Posted 23 Jul 2023 at 16:09

My GP gave me some medication (pills) I forget what they were called but they helped. Maybe ask your GP? John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 24 Jul 2023 at 18:17

Look up the pelvic radiation disease association website. They were very helpful to me. They have a list of specialists in various places around England should you need to see one.

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Radiation Cystitis - any tips?

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