Enlarged prostate - Experiences from others who suffer and options going forward

[Brandane]

Late to this thread as only just seen it, but thought I would share my experience of BPE...

Have had prostate issues for many years, probably since about the age if 50 (now 61). Began with frequent urination. Had several DRE's over the years, which confirmed enlarged prostate but PSA was normal so I was told not to worry. About a year ago I was put on tamsulosin to try and help with flow. There followed an appointment at urology clinic for a routine follow up in April 2023. I thought things were improving so it was a bit of a shock when I failed the flow test quite badly. Then a scan of my bladder revealed 800ml of urine still in there AFTER I had supposedly emptied it. The nurse wouldn't let me leave the hospital without being catheterised to empty my bladder. 800ml duly delivered into a bowl.

I was put on Dutasteride to try and shrink the prostate, this is on-going so no idea if it is working, but I suspect not. The reason I suspect not is because I have to self catheterise every night before bed (single use disposable things which for me are preferable to the alternative of having a permanently fitted catheter). Using this method for about 7 months now I am still drawing between 600 and 800 ml every night. Nurse told me (in August) that it should be down to about 300ml by Christmas and that I would then be free of the catheter procedures. Obviously that didn't happen!

Next telephone consultation with urology nurse is next month, so I will find out the next step then. I did have a face to face appointment with the consultant in October, and was basically told that it might be my bladder muscle which has been over stretched and beyond repair. In that case a prostate op is not worth the risks attached as I would be left with my existing problems re "chronic urinary retention". So best get used to using the disposable catheters (which initially caused much grief with regular UTI's). I have to go for a urodynamics test (which sounds like more torture) in March, to ascertain whether or not my bladder muscle is the problem or not.

Such are the joys of being a male in his 60's 🙄.

Edit to add the positive side: Using a disposable catheter before bed every night means that you are actually emptying your bladder. Which has done away with the problem of getting up for a pee at least twice every night. I can now quite easily go to bed at 11pm and not have to visit the toilet until 8am.. Luxury!!

 

[postman]

All the best from me here.At the end before my op i was going 12-15 times in any 24 hour period.The op saved my sanity,i dare not go out,everything was planned around toilet stops,including one famous one on a main road going to Edinburgh,it was just a toilet block very humble very grubby but to me at that time the best toilet in the whole world.

 

[ColinJ]

i dare not go out,everything was planned around toilet stops,including one famous one on a main road going to Edinburgh,it was just a toilet block very humble very grubby but to me at that time the best toilet in the whole world.

As promoted by Renton in that uplifting Edinburgh tourist video?

 

[quilkin]

I've had BPH for a few years (I'm 71) - not nearly as bad as some folk here, luckily. I do take Tamulosin when it gets bad but that's perhaps only once or twice a month.
One thing that I have found helps the problem of waking in the night to pee is to do with concentration. I'd be interested to know if others have found the same. I find that if, when I'm peeing the final time before going to bed, I am thinking of other things (chores, problems, family, cycling...) the flow stops prematurely. If I catch myself in this state in good time (i.e. before the flow stops altogether) and concentrate on nothing but peeing (by staring at the flow) the flow strengthens again and I can double (or sometimes more) the amount I pee.
The occasions when my thoughts have been elsewhere, and I haven't remembered to concentarte on peeing , have definately led to the worst nights in terms of having to wake to pee again every couple of hours, and not being able to get very much out each time.
Anyone had similar experiences?

 

[Gixxerman]

I thought it would be good to do an update.
The NHS did offer me the self-catherisation option, which meant that I could still do my normal activities as I had no it situ catheter. The downside was having to insert, drain, and remove a single use catheter first thing in the morning and last thing at night. This was not too much bother at home and was only slightly uncomfortable.
However, it did have a some drawbacks. 1. It gave me regular UTI's and I was on antibiotics every month or so. 2. It is inconvenient when away from home. When at work or on holiday at youth hostel, I had to hog the toilet as I did the catherisation and measuring (normal voiding, then what I got out with the catheter). The measuring was needed for the urology team to determine how well my bladder was doing and decide future options / treatments.
The NHS were tortuously slow, and didn't seem that keen to move the situation on at all. It seemed that as I was managing, I was off their radar.
After several months of this, I was getting a bit fed up with the almost constant UTI's. So I asked the NHS what else could be done. The NHS consultant said surgery was an option, but given my high post void residuals (approx 300-400ml) there was probably an issue with the detrusor muscle of the bladder (underactive bladder) and it would probably still not work even after surgery.
They after, some badgering, agreed to do a cystoscopy and bladder pressue study to see if there was any hope that surgery was worth trying.
However, in parallel, I had joined the BUPA scheme through work, and I went through them to see another, very experienced, consultant urologist. He said pretty much the same things, but thought that a TURP was worth a try, as even with a low pressure, low flow system, removing the output restriction still might work. We discussed other less invasive procedures such as REZUM (steam injection), Green Light laser, HoLEP etc. He said that in his experience and traditional TURP was my best chance to be catheter free. So 6 weeks from my first appointment with BUPA consultant, I'm in the private hospital having my procedure. It took the NHS that long just to get my first appointment!
Anyway the procudure went well under spinal anesthetic. It was very odd watching the whole thing on the screen. I'd seen YouTube videos, so I knew what to expect. However, it is very different when it is your own body on screen. The screen magnification, did fool me though, as the cutting wire loop looked huge and it looked like he was taking huge chunks of material out. It was only when I saw the extracted material that it is only very small shavings. The whole thing took about an hour.
I was sent home the following day. I had a catheter in for about 10 days, to give my bladder a bit of a rest. Then the trial without cathter day arrived. I was very nervous, as this was make or break for me. The consultant came in to see me and that helped me to relax.
The good news is that it worked. My post residual was about 140ml, which still high was acceptable. It was expected to come down further as things settled down. I did my own test a few weeks later, by self catherising, and the post void residual was now 50ml.
I am still a bit sore 4 weeks later at the time of writing. I am still weeing ok, but it stings a bit. I have no issue with erectile dysfunction, but I do now have retrograde ejaculation. That is not desirable, but I can live with it and it's far better than having to use catheters twice daily. I have to see the consultant again in another 3 weeks to check that things are still OK.
Overall, I am very pleased with the way it went. I just hope that it continues to work for the rest of my days. I do realise that the prostrate could continue to grow and there is a possibility that I may need another procedure in 10 to 15 years time.

 

[SpokeyDokey]

I thought it would be good to do an update.
The NHS did offer me the self-catherisation option, which meant that I could still do my normal activities as I had no it situ catheter. The downside was having to insert, drain, and remove a single use catheter first thing in the morning and last thing at night. This was not too much bother at home and was only slightly uncomfortable.
However, it did have a some drawbacks. 1. It gave me regular UTI's and I was on antibiotics every month or so. 2. It is inconvenient when away from home. When at work or on holiday at youth hostel, I had to hog the toilet as I did the catherisation and measuring (normal voiding, then what I got out with the catheter). The measuring was needed for the urology team to determine how well my bladder was doing and decide future options / treatments.
The NHS were tortuously slow, and didn't seem that keen to move the situation on at all. It seemed that as I was managing, I was off their radar.
After several months of this, I was getting a bit fed up with the almost constant UTI's. So I asked the NHS what else could be done. The NHS consultant said surgery was an option, but given my high post void residuals (approx 300-400ml) there was probably an issue with the detrusor muscle of the bladder (underactive bladder) and it would probably still not work even after surgery.
They after, some badgering, agreed to do a cystoscopy and bladder pressue study to see if there was any hope that surgery was worth trying.
However, in parallel, I had joined the BUPA scheme through work, and I went through them to see another, very experienced, consultant urologist. He said pretty much the same things, but thought that a TURP was worth a try, as even with a low pressure, low flow system, removing the output restriction still might work. We discussed other less invasive procedures such as REZUM (steam injection), Green Light laser, HoLEP etc. He said that in his experience and traditional TURP was my best chance to be catheter free. So 6 weeks from my first appointment with BUPA consultant, I'm in the private hospital having my procedure. It took the NHS that long just to get my first appointment!
Anyway the procudure went well under spinal anesthetic. It was very odd watching the whole thing on the screen. I'd seen YouTube videos, so I knew what to expect. However, it is very different when it is your own body on screen. The screen magnification, did fool me though, as the cutting wire loop looked huge and it looked like he was taking huge chunks of material out. It was only when I saw the extracted material that it is only very small shavings. The whole thing took about an hour.
I was sent home the following day. I had a catheter in for about 10 days, to give my bladder a bit of a rest. Then the trial without cathter day arrived. I was very nervous, as this was make or break for me. The consultant came in to see me and that helped me to relax.
The good news is that it worked. My post residual was about 140ml, which still high was acceptable. It was expected to come down further as things settled down. I did my own test a few weeks later, by self catherising, and the post void residual was now 50ml.
I am still a bit sore 4 weeks later at the time of writing. I am still weeing ok, but it stings a bit. I have no issue with erectile dysfunction, but I do now have retrograde ejaculation. That is not desirable, but I can live with it and it's far better than having to use catheters twice daily. I have to see the consultant again in another 3 weeks to check that things are still OK.
Overall, I am very pleased with the way it went. I just hope that it continues to work for the rest of my days. I do realise that the prostrate could continue to grow and there is a possibility that I may need another procedure in 10 to 15 years time.

Good write-up.

I have an enlarged prostate and do wonder if this sort of treatment will be needed one day.

Hope your stinging stops soon and that your 3 week check goes ok.

 

[postman]

Well done a TURP patient here also.mine was delayed due to covid.it got to be a nightmare in the end I did not want to go out.

 

[Brandane]

I thought it would be good to do an update.
The NHS did offer me the self-catherisation option, which meant that I could still do my normal activities as I had no it situ catheter. The downside was having to insert, drain, and remove a single use catheter first thing in the morning and last thing at night. This was not too much bother at home and was only slightly uncomfortable.
However, it did have a some drawbacks. 1. It gave me regular UTI's and I was on antibiotics every month or so. 2. It is inconvenient when away from home. When at work or on holiday at youth hostel, I had to hog the toilet as I did the catherisation and measuring (normal voiding, then what I got out with the catheter). The measuring was needed for the urology team to determine how well my bladder was doing and decide future options / treatments.
The NHS were tortuously slow, and didn't seem that keen to move the situation on at all. It seemed that as I was managing, I was off their radar.
After several months of this, I was getting a bit fed up with the almost constant UTI's. So I asked the NHS what else could be done. The NHS consultant said surgery was an option, but given my high post void residuals (approx 300-400ml) there was probably an issue with the detrusor muscle of the bladder (underactive bladder) and it would probably still not work even after surgery.
They after, some badgering, agreed to do a cystoscopy and bladder pressue study to see if there was any hope that surgery was worth trying.
However, in parallel, I had joined the BUPA scheme through work, and I went through them to see another, very experienced, consultant urologist. He said pretty much the same things, but thought that a TURP was worth a try, as even with a low pressure, low flow system, removing the output restriction still might work. We discussed other less invasive procedures such as REZUM (steam injection), Green Light laser, HoLEP etc. He said that in his experience and traditional TURP was my best chance to be catheter free. So 6 weeks from my first appointment with BUPA consultant, I'm in the private hospital having my procedure. It took the NHS that long just to get my first appointment!
Anyway the procudure went well under spinal anesthetic. It was very odd watching the whole thing on the screen. I'd seen YouTube videos, so I knew what to expect. However, it is very different when it is your own body on screen. The screen magnification, did fool me though, as the cutting wire loop looked huge and it looked like he was taking huge chunks of material out. It was only when I saw the extracted material that it is only very small shavings. The whole thing took about an hour.
I was sent home the following day. I had a catheter in for about 10 days, to give my bladder a bit of a rest. Then the trial without cathter day arrived. I was very nervous, as this was make or break for me. The consultant came in to see me and that helped me to relax.
The good news is that it worked. My post residual was about 140ml, which still high was acceptable. It was expected to come down further as things settled down. I did my own test a few weeks later, by self catherising, and the post void residual was now 50ml.
I am still a bit sore 4 weeks later at the time of writing. I am still weeing ok, but it stings a bit. I have no issue with erectile dysfunction, but I do now have retrograde ejaculation. That is not desirable, but I can live with it and it's far better than having to use catheters twice daily. I have to see the consultant again in another 3 weeks to check that things are still OK.
Overall, I am very pleased with the way it went. I just hope that it continues to work for the rest of my days. I do realise that the prostrate could continue to grow and there is a possibility that I may need another procedure in 10 to 15 years time.

Glad to hear your procedure has gone well.

It sounds like your pre TURP situation is very similar to mine, but as I am relying on the NHS, things are moving at a snail's pace. A year ago I was put on Tamsulosin to help the flow (no improvement) and Dutasteride to shrink the prostate.
I was also told to self catheterise, which has increased from once per day, to the current 4x per day. Like you, initially plagued by UTI's but thankfully less now. Taking out about 600 to 800 ml each time. Urination the natural way produces a dribble, maybe 100 ml if lucky.
Just had my urodynamics procedure to assess bladder muscle function, and awaiting results.... Then will know the next step. Been told that IF a prostate op will help, the waiting list is 2 years!!

 

[Slick]

Glad to hear your procedure has gone well.

It sounds like your pre TURP situation is very similar to mine, but as I am relying on the NHS, things are moving at a snail's pace. A year ago I was put on Tamsulosin to help the flow (no improvement) and Dutasteride to shrink the prostate.
I was also told to self catheterise, which has increased from once per day, to the current 4x per day. Like you, initially plagued by UTI's but thankfully less now. Taking out about 600 to 800 ml each time. Urination the natural way produces a dribble, maybe 100 ml if lucky.
Just had my urodynamics procedure to assess bladder muscle function, and awaiting results.... Then will know the next step. Been told that IF a prostate op will help, the waiting list is 2 years!!

Good old NHS eh.

I know we are supposed to be grateful, but it can be tough at times.

 

[Brandane]

Good old NHS eh.

I know we are supposed to be grateful, but it can be tough at times.

I think the NHS are good if you are at death's door and in urgent need of treatment. Unfortunately they are not so good in preventing us getting to that situation in the first place.....

 

[Slick]

I think the NHS are good if you are at death's door and in urgent need of treatment. Unfortunately they are not so good in preventing us getting to that situation in the first place.....

I have been getting treatment for over 10 years, including some experimental operations that I have no idea what they were, but I was just grateful that I was getting some sort of treatment. Unfortunately, covid hit, then the urologist was diagnosed with prostate cancer and urology services even gor what the were here, collapsed. Eventually I get an appointment with a urology nurse and then a very young newly qualified urologist finally tells me that I didn't improve with treatment because there was never anything wrong with my prostate, and that it was always a bladder issue that I had. I suppose it was better than when I first went to my GP as she said the symptoms I'm describing are classic STD.

 

[Baldy]

I think the NHS are good if you are at death's door and in urgent need of treatment. Unfortunately they are not so good in preventing us getting to that situation in the first place.....

My experience at Forth Valley has been excellent so far. Straight in and seen, no waiting, Straight in for an mri the next day. Only waited five days for a biopsy. I have no complaints.

 

[PK99]

I think the NHS are good if you are at death's door and in urgent need of treatment. Unfortunately they are not so good in preventing us getting to that situation in the first place.....

Half way through the pandemic, I visited my GP surgery for a routine BP Check. While there I had a blood test on a "may as well while you are here" basis.

That blood test went through the same process all blood tests go through and was screened my Haematology. It looked marginally "off" and was sent for further screening. Very early stage Leukemia was diagnosed and a whole chain of tests, biopsies and scans followed in very short order and a medication plan put in place by March 2021.

So I disagree. My experience is that the NHS was proactive. Positive. And focused on early diagnosis long before any symptoms,

 

[Brandane]

So I disagree. My experience is that the NHS was proactive. Positive. And focused on early diagnosis long before any symptoms,

I have also had a very positive NHS experience. Dermatology dept. of QEUH Glasgow noticed a concerning mole while I was seeing them for a separate matter. Had a good look at it, and within a week I was in Inverclyde Hospital having it removed. Malignant melanoma was diagnosed, and within another week or two I was back at Inverclyde having an area surrounding the original op removed.

But my point remains. They saw something of concern. As they did with you. The level of concern was such that they had to prioritise it and dispense with going on a waiting list. It was dealt with as a priority, and it was efficiently done. So a good result for me, and a letter of thanks delivered along with a couple of boxes of chocolates from our local artisan chocolatier. However for more routine matters such as my prostate/bladder issues, and ongoing breathing (heart/lung) issues...... they are painfully slow at getting it diagnosed and dealt with.

 

[All uphill]

Does anyone else struggle with Tamsulosin? I find it very effective at reducing the urge to pee, but the side effects are (for me) unpleasant. I get low BP, headaches and a dazed feeling.

It only comes in one dose size, 400mg.
With the connivance of my GP I'm opening the capsule each day and pouring 1/2 to 3/4 away before swallowing. That seems to still give me the benefits but far less side effects.