Prostatitis or pelvic radiation disease

User

Posted 13 Aug 2016 at 11:34

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 16:04 | Reason: Not specified

User

Posted 13 Aug 2016 at 16:08

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 17:38

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 19:59

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 12:44

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 17:22

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 18:35

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 19:30

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 19:31 | Reason: Not specified

User

Posted 14 Aug 2016 at 20:01

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 20:40

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 21:42

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 11:21

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 22:09

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 09:10

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 23:14

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 08:14

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 13:53

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 17:49

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 18:14 | Reason: Not specified

User

Posted 05 Oct 2016 at 16:50

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 17:15

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

User

Posted 05 Oct 2016 at 17:37

Would it be worth asking for either counselling or a referral to the pain clinic perhaps? It does seem that OH has experienced pains that didn't fit with the diagnosis or the treatment all the way along so in the absence of any medical cause, they should maybe start looking at whether it is psychosomatic or referred pain?

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

User

Posted 05 Oct 2016 at 18:36

Hello. Thanks for replies. The antibiotics were cypro something. I'm sitting in the car at football training so can't look on an empty box. But I'm sure you'll know what ones I mean.
I was reading about someone with similar symptoms., the cause of this other persons was ecoli in the prostate from the biopsy. I still can't help thinking that is what it is.
I have wondered that all along. But as antibiotics didn't help then apparently it can't be that.
Yes Lyn the consultant said if nothing shows up on the MRI and these new tablets don't work then the urologist will refer him to the pain clinic.
The urologist said it is slightly red and inflamed inside but said he's seen much worse.
They also did a flow test and said the flow was slower than it should be. The urologist was talking about sorting the flow out. But my other half isn't bothered about the flow, just wants the burning to stop, also the need to go so much. Before brachytherapy, he'd have a wee about 10pm go through the night, get up, make tea, bring it to bed and drink it. Then dress and go downstairs to the toilet about 7 or 8am. I used to be amazed he could wait so long. Now he usually gets up once or twice a night, but one day last week it was seven times. During the day it's every hour or so. He said he gets such a pain and burning inside and feels an urgent need. But the burning when he wees is the biggest problem.
It's all very frustrating. Let's see what comes of the MRI and another test he wants to do involving a probe of some sort. I can't remember what it was called. I should take notes I might remember.

User

Posted 05 Oct 2016 at 18:50

Ciprofloxacin? also known as Ciproxin

This is pretty general although also given for prostatitis and UTIs.

Could I ask if he (you) have read the possible side effects of this drug?

******

Edited by member 05 Oct 2016 at 18:59 | Reason: Not specified

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

User

Posted 05 Oct 2016 at 21:08

Yes that's the one. I personally wouldn't ave take it all that time. But that's what was prescribed. I think he has taken it for about a year altogether. Spread out over 2 years. If you understand me. The new medication is for epilepsy. I'm not keen on taking any medication. But he will take what he's told to.

User

Posted 05 Oct 2016 at 21:28

Erm, has anyone discussed whether the burning is as a result of reaction to the ciproxin??????????????? Fairly well known side effect :-( And as Johsan says, some very serious other potential side effects as well - if you haven't done so sjtb, you need to read it.

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

User

Posted 05 Oct 2016 at 21:39

Hi Sjbt,

I had a very similar problem last year, following on from HDRBrachytherapy, which gave me a combined problem of a prostate infection and radiation induced cystitis.

Antibiotics cleared up the infection but did nothing for the cystitis.

What I found was that the majority of 'Cranberry Juice' on sale in the Supermarkets, doesn't actually contain much Cranberry Juice, if you read the labels carefully it's described as 'Cranberry Juice Drink' which is basically sugar, water, flavouring and a bit of cranberry juice.

What worked for me, was the real fresh cranberries, available in the supermarkets any time soon in the run up to Christmas. I would buy a bag, boil them down in a pan on a low simmer, and either eat them neat, or mixed in with a bit of cooked apple.

In a matter of weeks my problem had cleared up.

If you can be bothered to search back to posts a year ago, quite a number of regulars on this site followed my example and had good results with real fresh cranberries, so it's definitely worth a try, but use the real thing, not the ready made cranberry Juice Drinks.

Dave

User

Posted 05 Oct 2016 at 23:59

This one Dave? http://community.prostatecanceruk.org/posts/t11219-Fresh-Cranberries#post138002

Barry

User

Posted 06 Oct 2016 at 06:45

Hello. Yes thanks. I'll look in to cranberries. We've lots of apples to cook. So I'll try them that way. He tried cranberry juice. But it made it much worse. He doesn't drink caffeine. (Stopped coffee and de caff tea which I think has a little still)
As for the cypro. He finds they ease the burning. As soon as he stops them the burning returns.
He's been off them about 6 weeks now and the burning worse than it's ever been.
It's quite normal to experience burning after brachytherapy. But it usually eases off after a month or so.
He's been prescribed gabapentin.
Thanks for advice.

User

Posted 06 Oct 2016 at 08:04

I have had both ciproxin and gabapentin (that for peripheral neuropathy) and the gabapentin was swapped for pregabapentin, both of which took away my ability to function in a normal world.

I really would look very hard at the possible side effects because although he is suffering now the long term effects of ciproxin for instance may make him regret it in the future, especially as he is an active man with a necessarily active life.

Perhaps look on line at forums regarding ciproxin (ciprofloxacin).

******

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

User

Posted 06 Oct 2016 at 08:17

I was also prescribed gabapentin for migraine. I only took them for 3 days but decided to try a deep tissue massage instead. I am all for alternative therapies. Massage worked for the time being anyway. I hate medication.
But OH will take anything as he's at his wits end. The nurse said they might make him feel spaced out. He's got a long drive to a cattle sale on Saturday. So she suggested not taking them until he's back home. She said she couldn't drive on them. But I can't persuade him to not take them. I was given 100mg 3 times a day. But he's on 300mg once a day for 2 weeks. Then 2 at night on third week. The consultant said only take second one if no effect after 2 weeks. But OH said he didn't say that. He said go up to 2 anyway.
The wincing noises coming from the bathroom when he has a wee make me realise why he wants to try anything.
Definitely going to look for some cranberries. I'll go after work.

User

Posted 06 Oct 2016 at 08:19

He's not taking the cipro anymore. No more prescribed. Finished 6 weeks ago.

User

Posted 06 Oct 2016 at 12:52

I have been to Tesco and Morrisons this morning looking for fresh cranberries. It is obviously not near enough to Christmas yet, as none about.
I tried Holland and Barrett for pure cranberry juice. They no longer sell it. So I've ordered some 100% cranberry juice off Amazon. That's the best I can do. I notice Waitrose sell them ftozin. But my nearest Waitrose is an hours drive away. It's an option though if the pure juice works. He can try a little first. I don't think it can get much worse.

User

Posted 06 Oct 2016 at 16:49

My Tesco has packets of cranberries near the dried fruit section

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

User

Posted 06 Oct 2016 at 18:55

Ours only had sweetened ones. I think they are meant to be fresh and unsweetened.

User

Posted 10 Oct 2016 at 19:06

Well, my OH has tried 100% pure cranberry juice (watered down) since Friday. Drinking it once on Friday then a couple of times a day until today. Monday. He's given up on hopes of it helping. He's going to start the Gabapentin. I really don't feel happy him taking it. It seems quite dodgy stuff also it just blocks the pain by effecting the nerves. Surely that isn't good. If it continues burning but he can't feel it, surely that has to be seriously damaging the pipe work?
I have been looking up non bacterial prostatitis and he has almost every symptom. One would think as the biopsy started all this, that it would be a bacterial version. But the.cypro should have cleared it.
It's all very frustrating. I've spent all weekend trying to get him to not take the tablets as I'm not sure they are the way to go. So I give up.

User

Posted 11 Oct 2016 at 02:07

Not saying this is the problem but some urinary infections are difficult to identify and resistant to some antibiotics ,so a possibility.

Barry

User

Posted 11 Oct 2016 at 07:01

Thanks. When they test for urinary infection one never shows. He's had lots of tests for them.

User

Posted 18 Nov 2016 at 19:26

I wrote a long update earlier but seems it's not here. We have very slow internet so that may be the problem. But I hope 2 updates don't suddenly appear.
I thought I would give an update incase anyone is following this.
My OH has now been referred to the pain clinic who are saying it's nerve pain causing the burning. He's been prescribed nortriptyline (7 at bedtime) plus the gabapentin. (1 in the morning) these were prescribed to block the pain. Eventually with the hope of a temporary pain block in the spine.
Here is my worry, as I have said before he has been told a few years ago that he had prostatitis caused by the biopsy. It showed up on his MRI after the biopsy (over 2 years ago) personally I don't think it ever cleared up. Surely if he's still got the burning but can't feel it because he's had the pain blocked isn't it going to do a lot of harm? Especially if it is a prostate infection. The he burning is there for a reason. Surely ignoring it and masking it isn't the way forward?
I couldn't go to the pain clinic with his as it was late afternoon and I have the children. So I've no idea whether the tablets will also heal the nerves but I assume not.
All the tablets are knocking him right out. He sleeps within minutes of sitting down in the evenings. We can make a lot of noise and he doesn't stir. OH is pleased because he's out for the count at night so he never needs a wee in the night. The burning has eased a bit since taking the tablets so he's keen to continue. It scares me a bit how they knock him out.
Another thing because I didn't go to the appointment things seem to have got muddled we had a copy of the letter from the pain clinic to our GP and it said the burning started a year after brachy. It didn't, it started almost immediately. It also says that antibiotics had no effect. They did to start with. But over time they seemed to stop. So things have got muddled up.
OH did have an MRI a few weeks ago, to see if anything showed up but we haven't had a follow up appointment. He has a telephone appointment with the pain clinic mid December to see how the medication is going and to decide whether he wants the temporary spinal block put in. I seriously don't think he should have this done until all other tests are done. Surely this should be a last resort.
Anyway, I'm not happy with the treatment plan. But OH is. He loves the "knocked out" all night!
Maybe I am worrying about nothing. But doesn't seem the way to go to me. But I guess I have to trust the professionals.

User

Posted 18 Nov 2016 at 21:17

I might be wrong but it seems to me from reading your posts that you are still hanging on to the belief that the pain is due to something being wrong in his prostate or to do with his biopsy / treatment whereas his medical people have satisfied themselves that there is nothing physically wrong with his prostate, bladder, etc. So blocking the pain isn't going to cause any damage because there isn't something tangible causing it. The pain clinic really is the expert in this area and perhaps you just need to trust them.

Nerve pain would make sense - some kind of neuralgia, perhaps triggered originally by the biopsy, the surgery to place the seeds or the prostatitis. Imagine shingles inside his body or how much your arm hurts if you accidentally burn it on an oven shelf. People that get sciatica say it is the worst pain imaginable. All are types of nerve pain, with very different causes of course. The treatment they have put him on is fairly standard - blocking the pain gives the damaged nerves a rest and allows the inflammation to settle, which in turn reduces the pain.

What dose is each tablet? 7 seems a lot for bedtime - 25mg would be the usual starting point for nerve-blocking. Is it worth checking with the pharmacy just in case there has been typo of some kind? And did they explain the side effects to him?

Edited by member 18 Nov 2016 at 21:19 | Reason: Not specified

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

User

Posted 18 Nov 2016 at 21:39

Thanks Lyn. Tablets are 10mg. It says start with 2 at night increasing up to 7. He's only done 1 night on 7. He is spending all his indoors time asleep. Cane in from the farm at 1pm had lunch. Slept from 1.15 till 2pm then went out. He had dinner at 6pm after coming in from the farm. Went back outside till 7pm. Came Iin and he's been asleep ever since. He'll go to bed soon and sleep till 7am he doesn't have trouble waking though. This is how our eves go now.
The only reason I think it's still prostatitis is the fact the symptoms started after the biopsy. He had an MRI after the biopsy looking at the cancer. We were told then he had prostatitis. Then he had another MRI 6 months later and prostatitis was still present. I re read the notes from the consultant earlier as OH has forgotten that the burning has been going on since brachy. The notes say prostatitis still present. Please prescribe antibiotics each time the symptoms flare up. At first each time antibiotics were prescribed the symptoms went. Each time the gap between end of antibiotics and the symptoms returning got shorter. He stoped taking antibiotics in July/August and hasn't been back on them. His symptoms have got worse and worse since coming off. It's almost like they don't cure it but hold it at bay.
If it is still prostatitis then it will show on the MRI. But there has been no follow up appointment. I think they should have waited for MRI results before prescribing all these tablets. Maybe I'm wrong. But that's how I look at it. If it's not an infection then yes, other things need to be done. Meanwhile I've got an other half who just sleeps all the time. I'm assuming the tablets don't heal it and he will be on them a long time.

User

Posted 18 Nov 2016 at 21:41

Actually. Just looked at the tablets and it says increase to 75mg if symptoms don't stop.

User

Posted 18 Nov 2016 at 22:41

I think your mind is closed so it is a shame you couldn't go to the appointment. He was referred to the pain clinic because they couldn't find anything else wrong with him. He feels it as burning but they don't believe it is burning at all - it is simply the nerves jangling. As they presumably explained, the nerve damage could have been caused by the prostatitis so he is left with the pain even though the infection is long gone. But blocking the pain is the best way of calming the damaged area and giving it a chance to heal.

Even if the instructions say 75mg I would be checking with a chemist. He may not have been warned - or he may have forgotten to tell you - that these meds can have some pretty serious side effects for some people.

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

Notification

Join the online community now.