Prostatitis or pelvic radiation disease

User

Posted 13 Aug 2016 at 10:34

Hello. I have posted on here before so some of you will know all the problems my other half has been having.

He had brachytherapy in Jan 2015 we had many problems after treatment, he was diagnosed with prostatitis after the biopsy, but after brachy the symptoms got worse. We have had spells when symptoms have eased. The consultant and the gp just prescribe antibiotics when symptoms flare up.

He has been on antibiotics for about a year altogether on and off. He's been on them for 2 months now at once. (Ciprofloxacin)

His main symptoms are burning when he wees. From the tip of his penis right along and up his bottom. It also hurts when he sits for longer than half hour, he gets a pain in his right buttock which extends down his leg. He also gets a burn when he needs a wee and says he has to go "now" There is a mild ache in his prostate and bones in that area all the time.

These symptoms will no longer go. Antibiotics are not touching it. The consultant said it is prostatitis. He said there is no way to tell whether it is an infection or not.

My step daughter is convinced it is pelvic radiation disease. Gp says not. Has anyone had experience of this? We are at our wits end now. It's really getting him down. As a farmer this is a very busy time of year and he said he really feels he can't be bothered anymore. He had his first grandson born 7 weeks ago but he hasn't seen him as its a 4 hour drive and he said he can't stand the pain from sitting. Due to the farm he would really need to go there and back in a day.

The gp prescribed some steroids yesterday to see if they help. He also takes tamsulosin.

He has had de caff tea for a year now. Though gp suggested no tea. He rarely drinks alcohol anymore. Fruit juice has been stopped too. If anyone has any suggestions we'd be grateful.

The gp has written to the consultant about seeing us sooner. My other half has also been calling for advice for 2 weeks, but no one replies to calls. Just an answerphone telling you what day to call. The answer phone is still switched on on those days. He has left several messages.

So we are now waiting for the appointment. Though last time we saw him he just said there was nothing more they could do. Just antibiotics. Surely all the burning can't be doing his pipe work any good.

I am at a loss anyway.

Edited by member 13 Aug 2016 at 15:04 | Reason: Not specified

User

Posted 13 Aug 2016 at 15:08

So sorry your husband is having all these problems. Can't really help with advice but sending best wishes for improvement. Elajai

User

Posted 14 Aug 2016 at 16:22

He is trying to drink more than he used to. Just after brachy he was told to drink 2 litres each day. But when I measured 2 litres out into glasses to show how much 2 litres is, he told me he would drown if I expected him to drink that amount! But he is drinking more than pre bracy. Interestingly the first wee of the day doesn't usually hurt. He has been not getting up at night for about 6 months, but the last few weeks he's started getting up for the toilet at about 4.30m. This wee is usually ok, no burning. Thanks for advice.

User

Posted 14 Aug 2016 at 17:35

Hi Andrew the GP wants me to book annual blood kidney test in about 4 weeks then go see him so will check then.

Ray

User

Posted 14 Aug 2016 at 18:30

Hello. It makes more sense to keep the bladder flushed through. But why does the first wee of the day not burn? Surely that is the most concentrated? Though that will be the biggest as he seems to go a lot during the day. Maybe the bladder is being rested from food/drink overnight.

Edited by member 14 Aug 2016 at 18:31 | Reason: Not specified

User

Posted 14 Aug 2016 at 19:40

I have a kiddies plastic toilet seat in the car keeps pressure of the prostate

Works for me

Barry

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User

Posted 13 Aug 2016 at 15:08

So sorry your husband is having all these problems. Can't really help with advice but sending best wishes for improvement. Elajai

User

Posted 13 Aug 2016 at 16:38

It could be just more than drink/food. From my own experience, which is RT rather than brachy, burning which isn't as severe as your OH is difficult to pin down on why it flares up at times. It took me a good 10 years to come of tea replacing it with fruit tea and Green tea. I noticed the improvement as in less frequent and less burning time but the most effective was no tea at all, so your GP might have a point. I tend to stick with those fruit/herb teas but even then some of the tangy ones cause trouble. The best being Peppermint and Lemon/Ginger which suggests to me it could also be down to food but which one? I also take as advised by consultant Pumpkin seeds daily - does that keep burning at a low level? Some members take cranberry. Hopefully other members can advise on the right type.

Ray

User

Posted 13 Aug 2016 at 18:59

Thanks for replies. He just had half a cup of tea in bed this morning. The gp suggested cranberry but that made him worse last time we tried. Could be because it's acidy. Cranberry kills ecoli in the bladder, but as no bladder infection shows up then maybe that's why it doesn't help. I did read that there's more caffeine in green than black tea.

No other tea today. He has taken steroids and anti inflammatories today and seems a little better. So one of them has helped.

Thanks again 😀

User

Posted 14 Aug 2016 at 11:44

Hi Andrew

I was asked to compile a water in/out record for a week to help the uro identify the problem. One was my drinking 2 litres of water a day as to me the logic was flush out the bladder. The feedback was after RT the bladder can't handle that amount so just drink when you're thirsty - I took it the uro didn't mean two many pints of mild or bitter -:) .

However as always different urologists may take a different view.

Ray

User

Posted 14 Aug 2016 at 16:22

User

Posted 14 Aug 2016 at 17:35

Hi Andrew the GP wants me to book annual blood kidney test in about 4 weeks then go see him so will check then.

Ray

User

Posted 14 Aug 2016 at 18:30

Edited by member 14 Aug 2016 at 18:31 | Reason: Not specified

User

Posted 14 Aug 2016 at 19:01

Yes the logic suggests that but for me any burning is after midday to early evening particularly if refurb work involves a fair amount of getting up from floor level.

Ray

User

Posted 14 Aug 2016 at 19:40

I have a kiddies plastic toilet seat in the car keeps pressure of the prostate

Works for me

Barry

User

Posted 14 Aug 2016 at 20:42

We have fairly recently got rid of the plastic kids toilet seats too as our youngest is only 7.

User

Posted 16 Aug 2016 at 10:21

Hello. Thanks for advice. I'm sure he doesn't have any problems with water retention yet. But I guess it's a possibility. Thanks.

User

Posted 18 Aug 2016 at 21:09

I have now spoken to the radiologist. He has phoned several evenings in a row. He said the symptoms are chronic prostatitis. He said the best thing is a referral to a urologist. He feels he can no longer help us.

So all we can do is wait. Continue taking antibiotics and steroids. He's also still taking tamsulosin and the anti inflammatories.

Hoping it won't be a very long wait. But it's a step forward. I hope.

User

Posted 19 Aug 2016 at 08:10

Well at least you got to speak to the horse rather than the mouth and he must (should ?) know what he's talking about.

Fingers crossed something will come of the referral. I hope so for your husband's sake, and yours and the family too as it's horrible watching somebody suffer when you have no control over it.

Sending best wishes to all of you.

Sandra

*******

We can't control the winds - but we can adjust our sails

User

Posted 19 Aug 2016 at 22:14

I've just been reading through this thread, your poor man, how horrible to have this pain and feel that no one can help when surely that's not true when it is a urologist who is the right person to determine the right course of action, thank heavens you've got a referral at last. Ours is brilliant (we are seeing him privately after a nightmare this year with bladder problems, though we'd see the same fella on the NHS most likely). John gets similar symptoms, especially a terrible pain from the tip of the penis right round to the anus and this is apparently inflammation of the urethra, caused by RT, infections, blocked urethra, damaged kidneys, you name it. He takes tramadol for the worst of the pain, and various other tablets to prevent spasms. He always advises plenty of fluid, no caffeine (that one gets ignored tbh), cranberry juice too. I sincerely hope your urologist will suggest things to help you both.

Lots of love

Devonmaid xxx

User

Posted 20 Aug 2016 at 07:14

Thanks both of you for your comments. Yes Devonmaid that sounds a similar pain to my other half.

The steroids seem to have made a big difference, he's finished those now. Hopefully he won't have too long a wait for an appointment. Though I'd quite like to go with him, so I'm hoping it will be once the children have gone back to school. Knowing the nhs it will be a little while. But to be fair for the prostate cancer we have seen people quickly. Our son found a lump on his neck and it it has taken 8 months to get it scanned which I thought was terrible. (Only a swollen lymph node in the end) But all the prostate appointments have been a few weeks wait and that's all.

I'll let you all know how he gets on. Psa test due September too.

User

Posted 02 Oct 2016 at 12:53

Hello sjtb

How did the PSA test go? Hope you have had an appointment with the urologist by now and things are getting better for your man. I start radiotherapy in the next few months and am not looking forward to it now.

User

Posted 04 Oct 2016 at 16:49

Hello. Thanks for asking. PSA was 0.4 so that's one piece of good news.

He's having a cystoscopy tomorrow. Every wee is still very painful. So I'm not sure whether they will be able to do it. We will see. Im hoping I'm allowed to go in with him and get some answers.

Good luck with your treatment.

Edited by member 04 Oct 2016 at 17:14 | Reason: Not specified

User

Posted 05 Oct 2016 at 15:50

Well, I feel that visit was a waste of time. Saw urologist. Other half had a camera up into his bladder. Nothing particular was seen. The urologist said that he really needs to see the radiologist who did the brachytherapy, but the brachytherapy chap said it was all beyond him and referred him to the urologist. I can't believe my other half is the only man they've ever seen with these symptoms.

Anyway. The urologist has ordered an MRI to se if there's anything showing up. Also given him some pain killers that act on the nerve endings. He said there won't be an infection as he's benn on anti biopics for so long with no effect.

So all in all I'd say a disappointing visit.

User

Posted 05 Oct 2016 at 16:15

Ah, that's a shame sjtb. Very annoying when you are hoping for answers.

I hope the antibiotics the other half has been on have been specific ones rather than just different generic ones that won't necessarily target the infection.

Wish him feeling better soon

********

We can't control the winds - but we can adjust our sails

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