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
brian34488 stephen54687
Posted
Hi all,
just in case you may perhaps not be aware of an outstanding option which is least minimally invasive with the added advantage of absolute precision called FLA, I had it done with no pain during or after, with no side affects and now my life is free of the ongoing horrors of severe bph from an enlarged median lobe and free from the evils of permanent surgical side affects, I flew from New Zealand to Dr Karamanian in Houston Texas to get it done, there is no hospital stay, all I had to do was lie down in an mri machine for a few hours (which by the way was large so I did not feel closed in)while they very carefully laser the offending tissue, I had a sedative and remained conscious, and went home the same day with a catheter for 1 week and at last free of bph. FLA is extremely accurate they can get as close to a nerve as 1mm without harm FLA is used for cancer and BPH, the laser is 1mm diameter and with the jump forward in mri technology this allows for exact precision, Dr Karamanian is loved by all for his humble, honest and very pleasant personality coupled with brilliance and very extensive knowledge and experience , his consultation is free and he is very happy to help anyone so guys you need to know about this FLA option yes it is expensive but given the money involved to set up with the latest mri equipment etc its understandable but what price do we put on minimal invasive treatment that sets us free and without harm, yes there are opponents to any and all options but at least be aware of the FLA option, all the best to everyone.
chuck68670 brian34488
Posted
Brian,
Thank you for sharing your information on FLA. Could you put that in a New / Separate section and Title it FLA ?
That could help many men find out about it. This Patient site is very hard to Search, and they likely would not see this post, unless they checked Urolift, and as time goes by your post will get buried under more and more Urolift comments.
Thanks for considering this,
Chuck
andrew23481 stephen54687
Posted
Hi Stephen,
In answer to your questions:
I would rather not name the hospital as I am neither recommending it or otherwise. It is not Southmead but just a typical non-London NHS hospital. My uro specialist does take private patients but I have been treated solely under the NHS.
The cystoscopy report was not done by the specialist but by someone else. If I had been private, then the specialist would have done it himself I guess. The TRUS identified the median lobe and confirmed the size of prostate at 28g; too small for PAE but suitable for Urolift. A median lobe is no longer a contr-indicator for Urolift (see MedLift) and my specialist said he could deal with it if it turned out to be the problem. He suggested HOLEP but RE was a given. Thinking about it with only a 28g prostate, if the innards are burnt out that doesn't leave much does it which could mean erectile dysfunction as well though specialist said he had not known that happen (but he also said RE wasn't a problem; why do they all say that when it clearly IS a problem for a lot of men?). Anyway not wanting to be 'sterilised' by having RE, I opted for Urolift. I was also offered standard TURP at a more local hospital.
At the urodynamics, I had a PVR of 150ml; I don't know why it had gone up to 260ml last January as I was not feeling uncomfortable having completed the flow test after which the PVR was measured.
The pain is constant and is a feels like a of combination of being twisted, being poked with a pencil, general soreness (like I'd been kicked in the nuts the day before). It is to the right side and above the right testicle somewhere more internal. On a 1-10 scale it is only about 1-2 most of the time but is there constantly and does sometimes go up to 3-4. The only thing I would mention is that decades ago I had a rigid cystoscopy and that left me with a similar sort of pain (though not so strong as this) which did not go for a year or more. Could never find out from anyone what it was. So might just be something with my anatomy rather than Urolift.
I think your Uro is right in that doing nothing is not an option as you will end up with bladder damage and later kidney damage. I think my retention is due to putting off a procedure for so long; the bladder walls thicken and then dont contract down fully.
If I were you Stephen, I would be considering self-cath, Urolift, or Rezum. However you know what it is like with the NHS getting a referral and if you change horses now you will have an even longer wait for anything to happen. Urolift works for many people; better if you dont have a median lobe. Rezum can be a bit of a lottery; you need soemone good to perform it otherwise they will burn out too much. If you dont mind the inconvenience of self cath and the odd UTI you will almost certainly get, then its an option with least risk.
To the chap who mentioned FLA, I dont think that is available in the UK, certainly not on the NHS. It was not even on my radar to fly off to another country and have a procedure done. What if it didn't work or I had complications after? The NHS probably wouldn't want to patch up someone else's work and it could get very costly if something went wrong. But thanks all the same, FLA does seem a good option if it is available.
Thanks everyone for your kind words. I will update how the end of month appointment with the nurse goes but don't expect too much by way of answers judging by my previous appointment though I didn't have blood in my semen then. (On the NHS you rarely get to see the specialist for routine follow-ups)
stephen54687 andrew23481
Posted
Hi again Andrew,
Thank you for the detailed reply, it is most informative.
I forgot to ask you whether you are, or have been, on any medication for BPH. As I mentioned I am currently on Tamsulosin and finasteride. I was also taking Mirabegron for a while because of the constant urge to pee and the discomfort but found, after having to stop them for the urodynamic test, that I could manage without them. When I stopped the Tamsulosin , as instructed before the urodynamic test, I found it extremely difficult to pee at all.
You ask what size my prostate is. Well, in fact, no one has ever told me. The only tests I have had are 1) DRE, initially at the GP who immediately announced that I had an enlarged prostate. (2 A PSA test(s) 3) A flexible cystoscopy , where the doctor immediately announced 'I think you are going to need an operation' and 4) Urodynamic testing. How do they determine the size?
You are right when you say that if I change my mind on the procedure now that it will most likely incur further delays, I have no doubt about it. I think, in my mind, that I know I need to do something and will, hopefully, feel much relief, in every sense of the word, once it is over and done with.
Thanks again Andrew. I do so hope that your condition improves shortly and that you can put all this behind you. Do, please, keep in touch.
derek76 stephen54687
Posted
If they don't tell you the size of your prostate ask them. Every DRE I've had over the past 25 years was accurate and confirmed by later tests including cystoscopy. When having the cystoscopy did you not watch it on the screen and ask questions ? It's your body show them that you are interested in it. The NHS policy is for the cheapest and quickest solution that is why Urolift is now one of the two preferred options along with TURP that does not need expensive new equipment.
Look at the NICE web site and search on prostate options for all the available treatments.
andrew23481 stephen54687
Posted
What size is your prostate Stephen? I assumed smallish but if it is large, > 80g, then PAE would be my first choice; then the other three mentioned in my previous post.
andrew23481 stephen54687
Posted
Hi Stephen,
I was on tamsulosin for about 6 months but it wasn't really helping; maybe because I do not have an enlarged prostate; just an awkward one that is shutting off the bladder neck. I stopped taking it as it wasn't making any difference, seemed to be killing off any libido, and I was worried about floppy iris syndrome from taking tamsulosin (might be too late now anyway as I think effects of tamsulosin are irreversible; horrible drug).
Don't rely on DRE for prostate size; I was once told by my GP I had a large prostate from a DRE examination. Only a skilled specialist or a TRUS will accurately determine the size. The size is key because >80g I'd go for PAE (or maybe HOLEP) but less I'd be looking at Urolift, rezum. Hope that helps.
andrew23481 stephen54687
Posted
Had a follow-up appointment (8 months). I am scheduled for a cystoscopy around mid July to investigate continual pain, blood in semen, and high retention of urine (260ml) following my Urolift procedure. The Uro nurse said a clip could be causing the pain/blood. The retention might be due to blockage or knackered bladder; I suspect the latter as I have had retention for a long time before getting a procedure. Might be looking at self-cath in the future as I can't see anything else will fix it other than some severe TURP type treatment that would have to leave me incontinent to drain the bladder. If anyone has any other ideas, please post.
Will update after next cystoscopy.
derek76 andrew23481
Posted
Why would a TURP type treatment leave you incontinent ?
andrew23481 derek76
Posted
Well I am thinking that if the bladder is not closing down then unless the TURP cuts a channel through to the bladder, I am still going to be retaining 260ml+. So surely any 'solution' would end up being so severe as to leave a permanent open channel for the bladder to drain i.e. I'd be incontinent.
NB. I'm not straining to go at the moment; just don't do much and the bladder does not empty properly. Hence I am not sure another procedure for bph is going to help plus my prostate is only 28g anyway but with a median lobe on the bladder neck.
brian34488 andrew23481
Posted
Hi Andrew, I had an enlarged median lobe and after being on drugs too long my bladder was also ruined eventually I chose the least invasive surgery, I chose to avoid turp because they were going to carve out my bladder neck valve which means the only thing preventing me having incontinence is the hope that the lower prostate valve will hold the urine and no urologist surgeon can guarantee it will, also they would at the same time damage the sperms natural pathway so that after turp the sperm then goes into the bladder and has to come out with the urine also they were going to carve out half of my prostate including its internal urethra leaving my prostate permanently full of urine, so how did I avoid all of these horrors? see above.
andrew23481 brian34488
Posted
FLA is not available in the UK and results are questionable from what I read. I'm glad it worked for you and hope it stays that way but not really an option for me on the NHS
andrew23481 stephen54687
Posted
Had my cystoscopy and a flow test. The urologist doesn't know why I have pain; says clips may heal over with more time; may improve with another procedure (see below); may just be nerves settling down. He did confirm that the cystscopy showed no clips had entered the bladder which is a relief. Guess I'll have to live with it; hopefully not for the rest of my life.
He said he went on a course in May last year for treating median lobe using urolift. Mine was done in October and he says since then the technique has been revised to use 2 lower clips at 4 and 8 o-clock positions instead of just one at 5-o-clock. The median lobe has grown around either side of the lower clip and is pushing up into the bladder neck and cutting flow again. He recommends a hot-wireTURP to remove the material pushing up the bladder neck though I have at least a 6 month wait for that second procedure. RE is quite likely. He said he could try two more Urolift clips in instead but I don't want to go through all that pain and recovery again for another failed op. TBH i'm so tired and bladder gets uncomfortable that sex is the last thing on my mind most of the time so if I get RE, then thats the road I took.
In summary I tried for PAE but my prostate is too small. Tried Urolift but not much improvement; maybe the 'revised technique' would have had a better outcome. Now it looks like I end up with a TURP anyway as the best solution.
As an aside, I see NICE now recommend Rezum for a median lobe (not Urolift) but my Uro doesn't do that and my prostate is too small as the lower cut -off for Rezum is 30g and I'm 28g.
Have you progressed any further with your appointment Stephen? As long as you don't have a median lobe, Urolift should be OK.
stephen54687 andrew23481
Posted
Hi Andrew,
Sorry to hear that your cystoscopy didn't result in any definitive answer regarding the pain issue but at least it did show that no clips have entered the bladder which, as you say, is a relief.
I am also sorry to hear that you are now facing a wait for another procedure, the very one which you were trying to avoid in the first place.
As for me, I managed to contact the hospital a month ago tomorrow, Friday. They replied to a message I left on their, it seems, permanently on answering machine. I was informed that they are experiencing 'problems' not just with my procedure but with others also, although she did not explain what the 'problems' were. She assured me that I had not been forgotten and that I was marked as 'urgent non cancer'. It will be a year on the 8th of August since I was sent home with a catheter after the cancellation of my last appointment.
Take care,
Best wishes,
Stephen.
andrew23481 stephen54687
Posted
Hi Stephen,
Thank you for the reply.
Do you know if you have a median lobe? If so, NICE recommends Rezum rather than urolift. In view of my own experience, I would not recommend Urolift if you have a median lobe.
Have you considered getting private treatment? What always worried me about doing that was if complications set in, would the NHS pick up the pieces or would it be an ongoing huge expense.
andrew23481
Posted
worried me about that was what would happen if there were complications? Would the NHS pick up the pieces or would it be an ongoing expense?
Hope you get something sorted soon. Have you considered complaining to your MP about the wait?
stephen54687 andrew23481
Posted
Hello again Andrew,
When I had my first telephone appointment with the consultant to whom I was referred from my local hospital, back in January 2018, I did ask him if I was a suitable candidate for Urolift to which he replied, 'I can see no reason why not.' I specifically asked whether I had a median lobe, as I had read the contra-indications with regard to Urolift etc, to which he replied, 'There is no mention of one here,' So I assume they know what they are talking about.
As for going private, I have 'window shopped' as it were and I could have it done, by the same consultant, at a Bristol private hospital for £7,000 but as I have waited this long I don't see why I should spend so much of my savings on something which may not even fix the problem and then, as you say, what then, more expense or back to the NHS.
Someone else suggested I complain to my MP or my GP or perhaps contact PALS. If I don't hear soon I will do so.
Thank you for your reply.
Regards,
Stephen.
andrew23481 stephen54687
Posted
Good luck. Keep us posted.
I have at least a 6 month wait for a part-TURP now on the NHS assuming I let it go ahead. This is in the south of England; outside London. I suppose the consultants not doing overtime over their pensions is not helping the waiting lists at all.
stephen54687 andrew23481
Posted
Hi Andrew,
Just to keep you up to date. I have received an appointment for a pre op assessment, my third for this procedure, for the 29th of August. Funnily enough the letter arrived exactly one year after my operation was canceled!
At least I know I haven't been forgotten.
Hope you are well.