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Prostatitis or pelvic radiation disease

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User

Posted 05 Oct 2016 at 16:37

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 17:36

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 17:50

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 17:59 | Reason: Not specified

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

User

Posted 05 Oct 2016 at 20:08

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 20:28

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 20:39

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 22:59

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

Barry

User

Posted 06 Oct 2016 at 05:45

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 07:04

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 07:17

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 07:19

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

User

Posted 06 Oct 2016 at 11:52

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 15:49

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 17:55

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

User

Posted 10 Oct 2016 at 18:06

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 01:07

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 06:01

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.

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