Hi Guys,
New to the forum. Was catheterised due to retention of urine on 23 Jul 14
because of an enlarged prostate. I am 62 yrs of age, I am not happy to have the catheter on, but I have been told that it needs to stay in till I have my Turp operation.
I have been on the "waiting list" for almost 7 weeks, it seems strange to me that no priority is given to those on catheters.
It could be a while till I have my operation, does anyone have any suggestions as to how I can go about getting this operation on the NHS quicker rather than later?
And any views would be appreciated on the newer treatment called "Greenlight Laser".
Kind Regards
Barry
Hi Barry,
I've just been in the same situation.
Theoretically you can choose any hospital in the UK for your operation. So the 'solution' is to find the one with the shortest waiting time and choose that. Alas, the solution seems to be no solution at all, because there does not seem to be any way of finding a list of waiting times, despite the news media often referring to waiting times for various ops being so-and-so.
One possible avenue is NHS Choices (google it), but I could only get it to spit out about three or four; which I then phoned directly, only to find that their waiting times were the same as my local one. I thought my GP could unearth the data, but she declined (too busy); but yours may be willing to do it for you.
I was fortunate to have enough savings to go private, tho' even there it took a lot of phoning to get the op done fairly quickly (it was August, when surgeons were going on holidays I suppose). So I paid £5,500 and had the op done within a week.
Good luck.
They should prioritise patients in your position. Try speaking to the surgeons secretary or the waiting list manager about being offered any cancellations.
I had Greenlight Laser in 2005 (75 grm prostate) and Thulium laser last year when my prostate regrew to 125 grm
There is also HoLep laser. It all depends on the preference of you local urologists.
I waited years for GL to get to the UK as No Way was I going to have a TURP with all of its dangers and longer recovery time.
Dear Ian,
Many thanks for taking the time to reply to me.
£5,500 seems a resonable amount for a Turp operation, compared to
some prices I have seen.
Was this a recent operation and where did you have it, if you don't mind me asking?
Kind Regards
Barry
Dear Derek,
Many thanks for your reply and your useful suggestions, which I will follow this week,
I noticed that you had your GL in 2005, the same year I believe that NICE approved the surgery. I am concerned about the Turp operation as well, and after doing some homework I may try and get a referral to a NHS hospital which is doing this newer type of treatment.
If you have any comments about the Greenlight Laser treatment you had, it will be much appreciated.
Kind Regards
Barry
I had the HoLEP done at Nuffield Brentwood Hospital, with a Mr Revi. All good, clean, quick. I stayed two nights (the op was done about 7 pm) and was up and walking on the 2nd day.
I don't know if you've explored the UroLift option; others have good things to say about it and I would have preferred that but was told it wasn't appropriate for my situation.
£5000 is very good as that was the going rate for GL when it started here in 2004.
The NHS surgeon who did my Thulium Laser last year calls GL/PVP "A commercial procedure and not a cure" in that it is profitable for the equipment maker and in his opinion not as effective. They all have a bias towards the procedure they have elcted to use.
Hi Barry, All NHS hospitals have protocols which dictate how long a person has wait to be seen/treated by. I my area it's 12 weeks. However, I told the consultant to put on record that I would turn in for surgery if he had a cancellation, however short the notice. I only had to wait 5 weeks and I wasn't catherised. You may have already experienced Retrograde Ejaculation if you have been on prostate reduction medication and expected it to resolve on stopping the medication. However, you should realise that this dysfunction becomes PERMANENT due to the surgery. You will know that you ejaculate into your bladder. If this is new to you ask your surgeon about it.
I was very satisfied with my GL procedure. It was done on the Friday afternoon and I expected to go home on the Saturday after the catheter was removed. It was totally pain free afterwards. However it took hours for me to pass anything and I was not completely voiding. As I had 130 miles to travel they preferred to keep me another night in case of problems.
Home by train and peeing quite well with initial stinging and a spurt of blood each time. Then pink with the odd small clot. Next day I went to the races and was out and about on my feet for six hours, completely back to normal. I went to the toilet on arrival and had to remind myself to go again before leaving for home.
I was drinking a lot to begin with to flush things out so still getting up three times during the night. My flow was never as good as I expected but the urgency and frequency had gone.
The Thulium procedure had a longer recovery time for me. I was still passing blood the next day and a lot of debris and some clots so they kept me another night. Still passing blood the next day so they sent me home with a catheter in and told me to come back to have it removed in two weeks. The catheter kept on blocking with debris that you don't get with GL as it burns everything away.
My urine was still quite pink when going to get the catheter removed but after the nurse flushed my bladder out it was clear from then on but after a few days I developed a UTI and had to get a course of antbiotics.
Again I was not impressed by my flow. It did has improve over the next few months.
I thought that all was well until about six weeks ago when I developed prostatitis. My urine showed an infection that an antibiotic evidently sorted out in a week but the painful symptoms remained until last week.
The hospital where i had the GL later got the second generation machine and were pleased with it however they eventually opted for HoLep.
Not permanent for all but probable.
I was OK after GL but by the time I had Thulium laser the damage had already been done by tamsulosin (Flomax),
Dear Ian.
Many thanks for the quality info, will look into it.
Regards
Barry
Hi Derek,
Many thanks for your comprehensive answer to my question in
respect of the GL surgery.
It is good to know that you were happy with this newer type of treatment.
It's looks like the way ahead, I just hope it is suitable for someone like me who has chronic retention.
Kind Regards
Barry
Hi Inquisitive,
You raised a good point in respect of making the consultant aware that I'm available at any time for this op. I will make that situation clear to the "Waiting List" team this week.
I have not been given the "drug route", probably because of the large amount of urine retention I had when I did the "Flow Meter Test", which was over 900ml nearly 7 weeks ago.
I have been on a catheter since (not a happy bunny), just want to get this over with. I am aware of the Retrograde Ejaculation situation in respect of Turp or GL Laser.
Just want to move on and get this sorted asap.
Kind regards
Brian
Hi Ian,
I have another question for you. In your letter you mentioned that you
were in the same situation as me. Does that mean you were cathetrised pending a operation and if so did you have Chronic Retention like me?.
There is a reason behind this question. I was told yesterday that
when the bladder is stretched it will not go back to it's normal size,
and I may have problems even after I have a operation Turp/GL.
Kind Regards
Barry
Yes, I had high retention: 1.2L. This was found when I had a cystonephroscopy (they thought I had an obstruction in my ureter, a possible tumour - turned out to be the high retention). So I then had a catheter fitted (3rd July) until I had the prostate op, and to see if this improved my poor kidney function reading and blood pressure (it has).
It was when I saw the urologist a month or so later to see how I was going on, and I'd niavely assumed I'd be having the catheter out, that I got the unwelcome news that it'd stay until the op. And you know the rest of that story.
Yes, I too was told my baldder would be floppy, etc. I can only say I now pee like a horse (well, comparatively). But I try to ensure the max evacuation by squatting (I have a squat stool) a la the 3rd world toilets - I've done this for some time now, as it also helps with defecation.
So all in all I consider my op a success. But I do still get up at least once in the night, often twice.
Hi Brian, Having spoken at length to my consultant, it appears that the necessity to be catherterised is often because the person has delayed reporting issues to their GP and the problem has become more acute. The enlarged prostate has subsequently become too enlarged to allow the bladder to function normally. The preferred route is an extended (6 months) course of medication to reduce the size of the prostate and to monitor urine flow/retention wilst doing so. All 7 of the people I know who were catheterised were not previously on medication, as they too had delayed visiting their GP. All said that they were relieved (no pun intended) by the catheter, as the retention had become very painful and it was difficult to manage their lifestyles. Hence, my being pro-active (and that I used to work in Community Health). I forced the issue by asking my GP to refer me for a consultation with a private health care provider. He was happy to do this and I was seen in 36 hours at a local private hosiptal by the consultant who also worked in the NHS (cost £175). This cut short the first 12 protocol time. I went straight onto medication (via a letter to my GP) as my condition wasn't yet acute. After 6 months there was no apparent reduction
Hi Ian,
Many thanks for your quick reply to my question. It is good to know that
you situation is ok and gives me hope for when I finally have my op.
I had 900ml left in my bladder after the Flow Meter test, and they put straight onto a catheter pending a op. I am hoping for the same result as you (i.e no self-cathetersiation after the op).
Only time will tell, just hoping that my bladder is not in a bad state.
Kind Regards
Brian
My apologies, My wee dog decided to press "send" on my last message before I'd finished. As my medication didn't have the desired effect and my condition worsened, my private consultant moved me on to the next stage by recommending to my GP that I pursue a 'scope via the NHS. This got me into the "system" with a subsequent TURP and recovery. Despite developing Prostatitis with a five month recovery, I am grateful that the problem of BPH is over and that I can get on with a "normal" lifestyle. Can I suggest to anyone that has yet to "tell all" to their GP that they do so at the earliest opportunity. The rewards are great. Best wishes, Ben
Dear Ben,
Many thanks for your high quality letter whcih gives fantastic advice to one and all. You hit the nail on the head, but you were fortunate to know how the system worked having worked in Community Health
I indeed was diagnosed with BPH some 10 years ago, was given some medicatation (proscar if I remember), I had a adverse reaction to the drug, told the good doctor, no other was drug given to me and nothing else was done, no monitoring etc by anybody. 10 yrs later my problems have got worse, hence my current situation.
I suggest to all who read these emails to pay good attention to Ben's letter, quality advice.
Kind Regards
Barry