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

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Gixxerman

Guru
Location
Market Rasen
I have an enlarged, but none cancerous prostate (benign prostate hyperplaysia or BPH).
Over the last 10 years, urination has been hesitent to start, and often.
I was coping, but starting to become slightly concerned.

Things came to a head 2 weeks ago when I was disgnosed with a kidney stone.
Incidentally, I wouldn't wish these on my worst enemy as I have never known pain like it.
Being the NHS, the machine for busting the stone was only availble at my local hospital on Thursdays, and as luck would have it, the day I went in with the issue was Friday.
The urology team didn't think it was a good idea to leave it for a week, due to my pain levels and the fact that the kidney might be damaged.
So as a stop-gap I had an operation to fit a J-J stent, which alllowed the kidney to get rid of urine.
They also hoped that the stent would make room for the stone to make its own way out. However given its size of 5mm that is unlikely, so another operation is IMO likely to be needed.
It was noted that pe-operation that I was not fully voiding my bladder and 350ml was being retianed. This was even worse post operation with 500ml being retained.
So they fitted me with a catheter and sent me home. This caused me some servere distress as my Dad had a catheter for BPH for the last 10 or so years of his life and it made those years an adject misery (smelling of wee, frequent leaks ruining bed linen and matteresses, and urinary tract infections galore.
This was borne out when I went back in a week later with a raging UTI and temperature on 39.3 which needed 3 nights in hospital and IV antibiotics.
I told the urology team that I do not want a long term catheter as it will be life changing for me. I am 58, but very fit and active, I cycle, wlak, climb mountains (even apline ones) and still play 6-a-side football. All this will end if I have a catheter. So I told them that this is not a practical solution in my case. They did seem very reluctant to go the surgery route though as they thought I might regret it if complications resulted.

So what are my options? Well there is surgery, with TURP (transurethral resectioning of the protetate) and other forms of prostate surgery. There is also drugs that can shrink the prostate, but these take 6 months or so to work, that is if they work at all, as the certainly didn't for my Dad.
They have started me on Tamsulosin as this is a muscle relaxant. My fear is that anything other than surgery is just staving of the inevitable, and I'll end up catherterized forever.

The worry is that surgery has some risks. Retrograde ejaqulation (whereby semen goes into the bladder), incontinence and urinary urgency.
The other factor is that I will be joining the company health insurance scheme in November (only can enrol yearly), and claims can be made from January after joining. They also treat existing complaints. This would allow me access to private healhcare and no doubt more choice of procedures available. I also have the financial funds to pay for the operation privately should I need to. So maybe with drugs they can get me to a point where the catheter can come out and give me so time to assess my options.

So have others had similar issues? What did you do? What was offered? Did you have surgery? What procedure did you have? How did it go? What were the long term experiences with surgery?

Thanks for any help.
 

Cycleops

Legendary Member
Location
Accra, Ghana
So sorry about the stones, I know they can be very painful. A reminder to others to drink plenty.
My prostate is enlarged and I get up 1-3 or 4 times a night. When I went to the doc she suggested that wasn't a cause for concern. Also had a check with a doc in the UK who wasn't too keen on sticking his finger up my bum and thought no need to worry. So nothing offered.
If it gets worse I'll go back to the UK for treatment as don't think there's much here.
Sorry I can't offer you much help but wish you all the best for your treatment.
 
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SpokeyDokey

67, & my GP says I will officially be old at 70!
Moderator
I have an enlarged, but none cancerous prostate (benign prostate hyperplaysia or BPH).
Over the last 10 years, urination has been hesitent to start, and often.
I was coping, but starting to become slightly concerned.

Things came to a head 2 weeks ago when I was disgnosed with a kidney stone.
Incidentally, I wouldn't wish these on my worst enemy as I have never known pain like it.
Being the NHS, the machine for busting the stone was only availble at my local hospital on Thursdays, and as luck would have it, the day I went in with the issue was Friday.
The urology team didn't think it was a good idea to leave it for a week, due to my pain levels and the fact that the kidney might be damaged.
So as a stop-gap I had an operation to fit a J-J stent, which alllowed the kidney to get rid of urine.
They also hoped that the stent would make room for the stone to make its own way out. However given its size of 5mm that is unlikely, so another operation is IMO likely to be needed.
It was noted that pe-operation that I was not fully voiding my bladder and 350ml was being retianed. This was even worse post operation with 500ml being retained.
So they fitted me with a catheter and sent me home. This caused me some servere distress as my Dad had a catheter for BPH for the last 10 or so years of his life and it made those years an adject misery (smelling of wee, frequent leaks ruining bed linen and matteresses, and urinary tract infections galore.
This was borne out when I went back in a week later with a raging UTI and temperature on 39.3 which needed 3 nights in hospital and IV antibiotics.
I told the urology team that I do not want a long term catheter as it will be life changing for me. I am 58, but very fit and active, I cycle, wlak, climb mountains (even apline ones) and still play 6-a-side football. All this will end if I have a catheter. So I told them that this is not a practical solution in my case. They did seem very reluctant to go the surgery route though as they thought I might regret it if complications resulted.

So what are my options? Well there is surgery, with TURP (transurethral resectioning of the protetate) and other forms of prostate surgery. There is also drugs that can shrink the prostate, but these take 6 months or so to work, that is if they work at all, as the certainly didn't for my Dad.
They have started me on Tamsulosin as this is a muscle relaxant. My fear is that anything other than surgery is just staving of the inevitable, and I'll end up catherterized forever.

The worry is that surgery has some risks. Retrograde ejaqulation (whereby semen goes into the bladder), incontinence and urinary urgency.
The other factor is that I will be joining the company health insurance scheme in November (only can enrol yearly), and claims can be made from January after joining. They also treat existing complaints. This would allow me access to private healhcare and no doubt more choice of procedures available. I also have the financial funds to pay for the operation privately should I need to. So maybe with drugs they can get me to a point where the catheter can come out and give me so time to assess my options.

So have others had similar issues? What did you do? What was offered? Did you have surgery? What procedure did you have? How did it go? What were the long term experiences with surgery?

Thanks for any help.

11.6mm kidney stone in left ureter 18 months ago. Resulted in UTI (complete with high PSA) and morphed into Sepsis and I was out of it for 4 days. Blood all over the place, 16 pees one night.

3 hour op' to remove stone plus insert stent. Further op' to insert wider stent as ureter had collapsed, following stone removal, and needed widening.

Left kidney badly damaged with only 30% normal function.

Urologist noticed enlarged prostate (median lobe) - 3 dre's with different consultants inc' one more vigorous dre whilst under GA. All felt benign.

Post-UTI my PSA tumbled in right direction to a "most reassuring" level after infection, op's and final stent removal - all PSA agitators.

Tamsulosin keeps everything just fine although I rarely peed overnight before all the above I did have some daytime urgency.

Not sure what the future holds tbh. Currently on regular reviews plus PSA checks.
 

oldwheels

Legendary Member
Location
Isle of Mull
I had a kidney removed complete with kidney tumour in 1982 which was cancerous but well contained and did not spread. They also removed the ureter in a separate operation which actually was worse than the kidney removal so far as recovery time was concerned.
I was monitored every 6 months for 5 years and then every year for another 5 years. This was by cystoscopy so I estimate I must have had about 15 to 20 of those over the years. This was in the good old days when you got a general anaesthetic for such things. My prostate was declared a bit enlarged but nothing to worry about after this period of checks.
 
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The NHS will go with the cheapest option, never mind what you want.
There's 7 million people in the U.K waiting for operations at the moment according to the BBC the other day. I'd just pay if I were you and get the treatment you want. I'm sorry you are going through this it sounds very difficult.
 

teeonethousand

Senior Member
I am sorry about your situation and hope you get fixed up.

As above I would just pay to get my desired outcome too. My thinking is if I pay to get fixed and I die shortly after I would have been glad I was as able as I could be to enjoy that time. On the other hand if I lived a long time then the cost is bringing me joy over a longer period and so ‘costs less’.

Prolonging active life is the prime directive for me.
 

postman

Squire
Location
,Leeds
so sorry to read your story.due to covid my journey was four years.Peeing night and day.broken sleep on bad days three or four times an hour.tamsulosin,betmiga and one tablet finasteride which my head did not like.So April 2022 a Turp operation,there is a laser treatment but leeds did not offer it.The Turp changed my life.at 72 i was not bothered about fertility problems and the ejaculation problem does not bother me,things got better actually.peeing is fantastic i bet i could put out a small fire,and now i am not going to the loo i can actually go out.A catheter was fitted for a few days till you can pee normally.so push for Turp or the laser.Best wishes,
 
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OP
OP
Gixxerman

Gixxerman

Guru
Location
Market Rasen
so sorry to read your story.due to covid my journey was four years.Peeing night and day.broken sleep on bad days three or four times a year.tamsulosin,betmiga and one tablet finasteride which my head did not like.So April 2022 a Turp operation,there is a laser treatment but leeds did not offer it.The Turp changed my life.at 72 i was not bothered about fertility problems and the ejaculation problem does not bother me,things got better actually.peeing is fantastic i bet i could put out a small fire,and now i am not going to the loo i can actually go out.A catheter was fitted for a few days till you can pee normally.so push for Turp or the laser.Best wishes,

I think i will insist on the laser treatment, if they dissagree i'll pay for it myself. Or alternatively, if I get peeing again without catheter in the short term, I'll get it done via BUPA in the new year via my works company health plan. They will get the the treatment I want regardless of cost. I should have joined the scheme years ago really as it is great value at £50 per month.
 

Once a Wheeler

…always a wheeler
Suffered BPH with no additional complications for 12 years. Frequency of urination was unwelcome but not problematic. Suddenly the ability to urinate virtually ceased and I hastened to A&E where they catheterized me and confirmed a urinary infection. The catheter was inconvenient but worked well and did not leak: the local community nurse made a weekly visit until I was proficient at doing all the routine hygiene myself. One unexpected advantage was that when out and about I could simply pretend to do up my shoe laces at the edge of the pavement in a busy shopping street and in fact open the valve at trouser-bottom level and empty the leg-bag straight down the drain with no-one but myself any the wiser.

A TURP operation was advised and took place five months after the crisis point. A local spinal anaesthetic was used, so I was drowsy but not unconscious. I spent one night in hospital and was then discharged to home. Lots of blood and bits in the urine for a month or so but within two months I was more or less back to pre-BPH condition. Fantastic return to a fully normal pain-free life. The only side effect is ejaculation into the bladder but that involves no pain and no other consequence. A total of seven months from crisis to cure.

All done on the NHS with good support and full professionalism. Best of luck on your journey; but where TURP is concerned my experience has been one of full satisfaction.
 
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All uphill

Still rolling along
Location
Somerset
I feel for you.

I've lived with an enlarged benign prostate for 7 years. Tried tamsulosin and Finasteride and didn't get along with them.

Two months ago I had a big meal (unusual for me) and that night found I could no longer pee. A and E the next morning catheterised me and sent me away with bags, which I disliked but could tolerate - felt like a smelly old man.

Replacing the bag with a tap made a huge difference- I could wear shorts again, was in control again.

Last week I was trained to self catheterise, so I decide if and when I need help with peeing. I'm recovering from a UTI now, and understand that is common with catheters.

I'm on the list for laser treatment in around a year.

Now I have to get back on the bike and regain some fitness.
 

All uphill

Still rolling along
Location
Somerset
So sorry about the stones, I know they can be very painful. A reminder to others to drink plenty.
My prostate is enlarged and I get up 1-3 or 4 times a night. When I went to the doc she suggested that wasn't a cause for concern. Also had a check with a doc in the UK who wasn't too keen on sticking his finger up my bum and thought no need to worry. So nothing offered.
If it gets worse I'll go back to the UK for treatment as don't think there's much here.
Sorry I can't offer you much help but wish you all the best for your treatment.

Hi @Cycleops I'd encourage you to get your prostate checked soon, given that it's enlarged.

The finger thing is minor and quickly over.

As you will know prostate cancer can be horrible.
 

tom73

Guru
Location
Yorkshire
Get a referral or you maybe able to do it yourself to see the Urology Clinical Nurse Specialist. They have much more time to go though things with you. They won't tell you want to do but will work with you to work out what's best. It's bread and butter to them they know options and risks inside out. Mrs 73 is one not in Urology but I know how they work and time they spend with patients.
 
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