Possible Prostatitis but concerned. Advice welcomed.

Johsan, Many thanks for your reply. I am off to a walk in centre today after calling 111 last night. I tried to have a rare night out with some good friends but after one Jack Daniels I was visiting the bathroom 4 times in a matter of minutes, the urethra pain returned and had a general feeling of malaise and discomfort so left and called 111. What was worrying is that some of the questions she asked like do I have any back or hip pain. No back pain but I have had hip pain since 2012 although I had an XRay for that and it was diagnosed as arthritis. It got worse last year so had another xray and the arthritis hadn't got worse so I was relived but now slightly concerned that the arthritis is the cause of the hip pain after all although it has improved since I started sleeping with a pillow between my knees,.

My other worry (it shouldn't be but it is) is that I started a new job at the start of January and within 3 weeks I am suddenly having a week off with these symptoms which I am sure most employers would tell you that won't go down well. I was due to go back tomorrow but with this big relapse since Friday I now don't know what to do. Struggle through popping to the loo every 5 minutes, get another certificate from the GP and probably get fired when my first probation comes up for lack of attendance or just resign and concentrate on getting well. A worry on top of a worry. I work with SEN Kids and love the job but you have to be switched on at all times and right now I am all over the place!!

Well I am as confused as ever today. Saw a GP with an update from the urologist and in some ways he was dismissive of the urologist and said he had never heard of him and just sort of shrugged and said "well he is the expert" thus not instilling a lot of confidence in the medical profession from me!! Whilst the GP wasn't dismissive of a sensitive bladder he did say something must be making the bladder sensitive and therefore suggested that the enlarged prostate was the culprit, which to be honest does make sense but why did the urologist dismiss that and who is correct?!

So the GP basically told me to carry on taking the Finasteride even though the urologist told me to stop taking it but to continue as well with the Mirabegron that the urologist prescribed for the bladder,. The GP then just casually suggested a PSA test every year would be fine and sent me on my way.

My bladder symptoms are a bit better so not going every 5 minutes but still not perfect and I still have this irritating discomfort in the urethra. I know both meds take time to work, if at all, but considering the seemingly difference of opinion between urologist and GP I am really not sure what to do. I am also concerned a tad about reading that Finasteride can mask a correct PSA score thus potentially not showing up any possible future rises which of course is not what you want.

So not sure whether to book again with another GP and maybe even another urologist considering these two seem not to be able to agree. The only thing that both seem to agree on is that the prostate is enlarged but both said the DRE didn't show any areas of concern so that's a positive I guess.

Thoughts on what others would do in this situation welcome?

I would be a bit p*****d off with the GP to be honest - overactive or over-sensitive bladder is a real thing and you have had tests that show you are emptying at 10ml which cannot possibly be put down to your prostate since it is happening higher up the command chain, so to speak. My husband was diagnosed with overactive bladder (initially caused by a muscle problem) when he was 35 and took meds until he was diagnosed with PCa 15 years later. The tablets were the difference between sleep and no sleep.

GPs are so called because they are general practitioners rather than specialists - urologists have to study for a long time to be acknowledged as having that specialism. If you were my husband, dad or brother I would be making sure you took the meds prescribed by the urologist, stopped taking what you have been told not to take and sending you back to see a different GP for any necessary prescriptions.

PS The halving of PSA on finasteride would not have been a massive issue since you are aware of it - future PSA results would simply need to be doubled to get an idea of the true score.

There has to be a solution which will at least improve your situation and this could require referral to a specialist with greater expertise. Infections aside, there can be other circumstances which lead to greater frequency. One of these is physical or emotional stress but this is unlikely to be the case over such a long period. Pouches (Diverticulum) can develop in the bladder which happened to me as was a narrowed sphincter for which I was prescribed Tamsulosin which I take to this day. There must be other reasons why frequency/urgency becomes a problem. A camera was inserted through my penis and nothing more was found at the time. I did attend a special clinic where I was advised to have cranberry juice and not to have normal tea or coffee but if I did have these to have decaff variants. I had to measure and record my intake of fluid each day and try to hold on for as long as I could before giving in to visiting the toilet. This formed part of what they termed 'bladder retraining'. It also meant not having a pee just before I went out 'just in case' if there was no real need. Similarly, I was not to have a pee when I woke in the night 'just in case I might wake up again', unless I was really bursting. This did help, although I do need to get up once each night and sometimes twice despite not drinking anything after 8pm except on rare occasions. Whether any of this affects you I am unable to say.

The exception to this in my case was when I had Radiotherapy, when at worst I had to pee anything up to 8 times a night - very debilitating. The situation gradually improved so that after a couple of months or so after RT finished I was back to my pre RT frequency. Clearly, this is not a reason for your problem but I mention it to show there can be other reasons which can give rise to this problem.

Of course you want a long term fix but depending how strenuous your job is, as an interim measure you could consider doing what I did and get one of the systems where you attach a bag to your leg that holds your urine. This is fed by a tube connected to a replaceable sheath covering your penis. The bag has a valve to facilitate emptying the urine. An addition larger bag can be attached at night. I found that as well as the strap securing the bag, during the day an elastic stocking available in several sizes as part of the system better secured the bag in place but suggest don't go running for a bus if you adopt this suggestion!

Edited by member 13 Feb 2018 at 14:28  | Reason: Not specified

This is a bloody nightmare. One day you think you are improving the next you are running to the loo every 10 minutes. Back at work Monday and it's going to be a disaster with the frequent bathroom trips!!

One thing I have noticed though is that if I sit in front of the TV on my side my urgency issues are better which I suppose makes sense because you aren't putting as much pressure on that area. Unfortunately sitting on your side is not easy long term so I purchased a ring cushion to see if that worked but it's very uncomfortable in other ways.

So I have been looking at prostatitis relief seats and cushions and there are loads online some quite reasonable and some really expensive so was wondering if anyone on here uses one that they are happy with or can advise the best and worst? Worth a try. Thanks.

Max, you say nothing different drink wise but how does the output compare with the input.

How much do you actually drink over the course of a day and have you tried cranberry juice as Barry suggested?

Roll on  your late February Appointment eh.

PS have you ever mentioned the double groin ripped muscles whenever you have seen anyone about your problem

Edited by member 24 Feb 2018 at 18:32  | Reason: Not specified

Well logically, you only pretty well pee what fluid you intake plus fluids that are extracted from the food you eat. Might be worth keeping a record of all you eat and drink and at what times and log when you pee and how much over a couple of weeks. Appreciate this could be difficult when at work but perhaps a Conveen bag system or similar could help. With this information perhaps you could be referred to a specialist urinary clinic as I was.

I previously came of Vesicare due to severe constipation which was worse than peeing frequently. So far I'm managing it but?

Don't read you as moaning as I've some understanding of your frustration. In my case an easy 15 yrs of minimum 3/4 times a night except for 1 night of zero, I remember it well -:) Add on those not infrequent 10 plus times a night, which at present Vesicare is helping, and nights when you wonder where all the waters coming from as it was just a normal day. I've given up trying to work out the logic on those two. I've tried the juice/food/drink routes which seem to work at first but then back to square one. So I'm thinking after all these years my body sees 3/4 times as now normal so will defeat any attempt to change that? Thus I can only advise you push to get it sorted before you get to that stage.

Ray

LynEyre I would be inclined to agree but the problem I seem to have is that there are two types of feelings. The first is in the bladder higher up where you feel that you could go to the bathroom but because in my case it's a "bladder" feeling then I can quite happily hold for a while sometimes a few hours. The feeling that gets me every time though is the urethra feeling which is far lower down, almost like a chill which you just can't hold and when you can end up going every ten minutes for hours or every ten minutes two or three times then you are fine for a bit. That's the feeling that I would say would be very difficult to retrain.

I think you need to have the cystoscopy and then go from there. Not much point seeing a specialist and then preferring to believe Dr Google.

I understand that the botox injections are often very successful. If the cystoscopy is clear you could also ask for a referral for bladder retraining?

Hi Guys,

Well I had the cystoscopy and the results which I post below.

All ok'ish which is good obviously but I am still a tad concerned about this "pigmented prostate".  I sort of remember during the procedure my prostate flashed up on screen (which surprised me as I was pretty sure they can't see the prostate on a cystoscopy?!) and it was covered in what I can only describe as purple pimples, and I sort of remember the consultant saying some of the pain could be caused by crystals that I pass (bladder, prostate stones?) but I wasn't quite "with it" so it didn't all go in. 

The description of this pigmentation is not particularly detailed with the comment "might indicate prostatitis" and I am reluctant to consult Dr Google!!  Obviously you have to trust your consultant but just wish they had been a tad more clear on what this mottled pigmentation actually is.

"Further to ******* underwent a flexible cystoscopy due to symptoms of bladder over activity and slight dysuria/penile pain.
The urethra was normal, the prostate was pigmented all over which might indicate prostatitis, but I am delighted to report there was no bladder pathology and both ureteric orifices looked normal.
 
I fully explained the findings to ***** and there is no doubt he does not need Finasteride because his prostate is not really enlarged (normal size) and if he does experience dysuria or penile pain, which can be an ongoing problem, he just needs to use some Ibuprofen.
 
His nocturia is variable from zero to twice (between 12 midnight and 6 am), passing a fair amount of urine between 300 and 400 mls each void.
 
I strongly advised him to stop drinking three hours before bedtime to avoid getting up at night. However, if he gets up two to three times every night despite this, he may benefit from a small dose of Desmopressin Acetate before going to bed.
At this stage he does not need any further investigation or treatment. Therefore I have reassured him and discharged him back to your care."