Urolift
Posted , 11 users are following.
Hi all,
I am still on the waiting list for the Urolift procedure. I have been on the list since January 2018. I went to have it done in August 2018 but it was cancelled half an hour before I was due to go to theatre because I went into retention. I was sent home with a catheter which I had for three weeks. I was re-listed for the operation and had a pre-operative check back in December 2018. Since then I have heard nothing from the hospital.
I am taking Tamsulosin and Finasteride which I have been on for 6 and 4 years respectively.
Prior to being placed on the list in 2018 I had a flexible cystocopy and urodynamic tests which revealed I had an occluded prostate and that my bladder was having to exert a lot of pressure to get urine out. I was offered a TURP but declined in favour of Urolift.
Since I have had the catheter I have experienced some improvement in my symptoms, mainly the burning discomfort I was suffering after urination which seemed constant along with the urge to pee all the time. Urinating, on the whole, is variable but adequate with an average void of about 200ml.
The truth is I do not know, with all the negative articles on this forum recently, whether I should go ahead with it or not. I am concerned that it may just make it worse. On the other hand I am worried, if I do nothing, whether I am just storing up trouble for the future as my original urologist said 'Doing nothing is not an option'.
Any advice? What would you do? Anyone had this done and had a positive experience?
I am in the UK and relying on the NHS so do not have many choices open to me.
Steve.
0 likes, 34 replies
mikemh stephen54687
Posted
Well you seem to be doing ok in voiding 200cc on average - I wish I could say the same. My max ever is 275cc and most commonly it is 100cc. So don't despair.
I had a couple of urolifts and recently had aquablation which it being pioneered at Frimley Park in the UK. It does the job of a TURP with the potential of few if any long time side effects. I was told that it might start up on the NHS this summer but I that may now be out of date info.
Mike
chuck68670 mikemh
Posted
Mike,
Aquablation is one of the option I am being forced to consider. I'm in the US, but please tell us everything about Aquablation; especially when and how it works or any issues. Thanks,
Chuck
mikemh chuck68670
Posted
Hi Chuck
Aquablation in principle is good news. The longevity and benefits of TURP without the long term side effects - at least that is what I am hoping - currently optimistic as I have No RE!
I have written about my experience somewhere on this site - I find the place difficult to navigate - if you can't find it, I will find the link for you..
Cheers
Mike
chuck68670 mikemh
Posted
Thanks Mike, I will look.
I agree, this site has very limited "Search" capabilities.
Did you title it Aquablation ?
arlowood stephen54687
Posted
Hi there
If you are having second thoughts about Urolift then a quick search indicates that PAE and Green Light Laser (GLL) treatments are also available via the NHS.
TURP of course is also on offer but I suspect you would not be interested in that as a first surgical option.
Not sure how the demographics work out for PAE and GLL in terms of where they are routinely offered so you may have to search around if they don't feature as an option at your local NHS hospital
Illustrate stephen54687
Posted
Hello my friend
I'm in the US so our medical system is different. I just had the urolift surgery done a week ago. My bladder has been stretched because of urinary problems throughout my life. I just turned 70.
I always have retained approx. 500mm of urine it never completely empties. I don't/can't self catheterize myself so I have lived with it straining to start a stream and never completely emptying my bladder. I decided to go with a urolift first then go from there. The least invasive procedure.
I will keep you posted, but so far I don't have to strain to pee and the stream is not as good as my youth but certainly stronger. It's still early yet and I will think positive and hopefully in two more weeks the burning and swelling in my urethra and prostate will be gone.
You are certainly suffering and I truly feel for you your pain. Catheters and the urodynamic test is horrible. Pain, discomfort, burning and more pain. A terrible torture, at least to me.
PLEASE do get the urolift before anything else. You definitely sound like a good candidate.
What a medical system to have to wait a year on a waiting list. I can't imagine what that feels like.
I wish you luck and hope that you get through this without a lot of suffering.
GET THE UROLIFT. I think it'll work for you.
Take care Bud,
David
stephen54687 Illustrate
Posted
Hi David,
Many thanks for your words of encouragement which are greatly appreciated, especially as you are suffering so much yourself.
I was all fired up to have it done last August but all this waiting around is really stressing me out. One day I feel I need the procedure, and feel confident about it, and the next, if I have had a 'good' day, that I can carry on quite well without it but it is always in the back of my mind that doing nothing can damage my bladder, as yours has been, which then leads to yet more complications.
I hope your symptoms will improve soon which will not only be a great relief to you but provide me with even more hope for a positive result.
Again, thank you for your reply.
Take care.
Steve.
ken95795 stephen54687
Posted
I had Urolift done 11 months ago after being on the drugs for 3 years and finally going into retention about 3 weeks before having the operation. I have been very happy with the results as I now pee only once or twice a night now and there have been no side effects. Ask your Uro how many they have done and how many have been successful and go with one that has had best results. There are complications for men with diabetes who get Urolift.. I still sometimes have a rough night of 4 or 5 times if i have more than one alcoholic drink or very spicy food so i have to behave in that regard.
stephen54687 ken95795
Posted
Hi Ken,
Thanks for your reply.
It's good to hear you are happy with the results, that is what I want to hear! Are you now off the drugs? Are you aware of the 'inserts' in any way, i.e. any discomfort in that area?
Best wishes,
Steve.
derek76 stephen54687
Posted
You do have choices and are entitled to them even with the NHS if you are persistent. You can ask to be referred to another hospital and even another area health authority if your one does not do the procedure that you want .
When I lived in TURP only Edinburgh I asked to be referred to Newcastle who did GL. Now in Sussex when I needed a later procedure after it regrew I asked to be switched to different surgeon at the same hospital who did laser.
andrew23481 stephen54687
Posted
Hi Stephen,
I had Urolift done on the NHS last October. Investigations started January 2018 and I was hoping for PAE but with a 28g prostate, I didn't qualify for PAE so opted for Urolift. I had had cystoscopy, TRUS, and urodynamics beforehand. The urodynamics showed a severe restriction to flow (5ml per sec) and urine retention. The cystoscopy seemed to show everything was OK but was not done by the specialist (NHS for you) so I was in the dark about what the problem was. When the specialist was in there he found a median lobe pushing up into the bladder neck.
I had 3 Urolift inserts around the bladder neck/median lobe and two more for the prostate as I understand it. Had I known it was a bladder neck/median lobe problem I might have chosen something else, but maybe not I don't know. Anyway a cancellation came up and I was phoned on the Monday for a Urolift to be done on the Thursday. It was done under general anaesthetic and I would definitely recommend that as they poke a 7mm diameter tube up the Johnson and then start firing staples into you. After I came round I was shaking most of the day from the pain. Over the first month I had a bad UTI that the first lot of antibiotics did not clear and it came back again.
In January my IPSS has gone down from 28 to 15, flow is now 10ml. So some improvement however when measured in January, I was retaining 260ml urine; not good. They wanted me to do self-cathetering but I have left that for now. If I was going to have to cath then I could have done that in the first place without bothering with the Urolift. I also still have pain in the groin area which the Uro nurse dismissed as post-op pain in January however 8 months on and it is still there. I don't know if it is the clips or what causing it. This month I have also had blood in my semen which has never happened before. I have another appointment with the Uro nurse at the end of this month and will be asking about the continuing pain and blood in semen.
So thats my NHS experience. I am surprised you are still waiting; are you sure you are definitely on the waiting list? You've already waited once so they ought to fit you in as soon as now?
I think whatever procedure you have it can work out well or not so well. There's an element of luck in it. You might also look at Rezum though RE is quite likely with that though not always.
chuck68670 andrew23481
Posted
Andrew,
I wish you the Best with your situation. I too am "too small" (38gm) to "qualify" for the PAE procedure. I have no median lobe, nor strictures or side issues, and they agree my prostrate constricting the urethra is the apparent cause; and my flow in very low, although I keep my PVR down to 50-100ml through CiC. I'm in the States and am now trying to find something less invasive/destructive that I qualify for, that my insurance will at least Help pay for, and that doesn't have a lot of side "issues". Take care Brother,
Chuck
derek76 andrew23481
Posted
Apart from Urolift were you offered any other options ?
stephen54687 andrew23481
Posted
Hi Andrew,
Thank you for taking the time to post your detailed reply, it is much appreciated.
Firstly may I ask which hospital you had the Urolift done at. I am waiting for Southmead hospital.
It is disappointing to hear that your cystoscopy did not reveal the presence of a median lobe which, so I understand, is a contra-indication for Urolift. It is also disappointing to hear you came away with a 'free gift' of a bad UTI.
You mention pain in the groin area. How bad is it and is it constant?
A PVR of 260ml is certainly not good after the procedure. What was it before? There seems to be little point in going through all this if they are now suggesting self cathing, you could have chosen that without the procedure. I would be interested to hear how your end of month appointment goes and what the nurse has to say. Perhaps you could PM me?
As for being certain I am on the waiting list well that's another story because after I was sent home with a catheter, when the procedure was cancelled in August, I received no appointment from the hospital to remove it, which I was told would be in two weeks. I had to chase them up but could get no sense from the hospital. Eventually I contacted the district nurse via my GP and she removed it. I then had to call the hospital to inform them it had been removed but there seemed to be some confusion over 'the patient' giving them such information. I made several phone calls to the urology department but kept getting an answering machine which asked me to leave a message which I did but no one called back. When I eventually got through to check if I was on the list, in October, I was told that I was not so that was two months wasted. I then get a call from the hospital from someone 'tieing up loose ends' asking me if I had had the catheter removed. The following week I get a call saying that I am now on the list. That was the end of November. A week later I get an appointment for a pre-op check, my second, for the 10th of December.
Having heard nothing from them since I have called them on several occasions and, when I manage to get past the answering machine, I am told that 'Urolift is not classed as urgent' and that 'they don't allocate much theatre time to it.' It seems asking for this procedure makes you a 'second rate patient', and certainly does not instil confidence.
It is all these negative reports, during this long wait, which is making me think 'is it worth the bother' if I can get by without it.
I hope your condition improves and that the procedure will come good for you.
Best wishes,
Steve.
derek76 stephen54687
Posted
Seems that your GP is not helping you much to speed things
up. Have you spoken to Patients Liaison at the hospital. Their number and g-mail will be on the hospital web site. When I had problems with urology I wrote to the head of the department and he phoned me back the next day shouting. He found that I could shout louder than him 😃
From Southmead website October 2017 it appears that this is all they offer apart from TURP. No mention of GL which has been around since 2004 or several other NICE approved procedures.
Previously the only surgical treatment available on the NHS was an operation called Transurethral resection of the prostate (TURP), where a section of the prostate is cut away, but now men can benefit from a less-invasive procedure called UroLift.
The procedure, which was initially offered at Southmead Hospital in October as part of a trial and is now being made
available to all suitable patients, involves inserting an implant to lift and hold the enlarged prostate tissue out of the way of the urethra so that it no longer causes an obstruction.