Urolift my experience: 75gm prostate 7 tags
Posted , 16 users are following.
I had a Urolift procedure 3 days ago.
Background
I have had an enlarged prostate with the attendant common symptoms for about 7 years or so. Initially my PSA went up and was pressed to have prostate cancer biopsies, which I resisted for about 5 years. Eventually when my PSA went up again a little abruptly, I succumbed to the pressure to have biopsies 18 months ago. I had an MRI scan (self funded!) and then targeted template biopsies which gave a negative result.
After the prostate biopsies, I began to suffer sometime very weak flows to the point of temporary urine retention. I have been taking an alpha- blocker (alfuzosin hydrochloride) since then – actually I am not sure it helps much … I declined to take a 5-alpha reductase inhibitor because I did not relish the side effects. At that time I had a prostate size of 74cc according to the MRI scan.
I was measured to have a flow of about 8ml/sec voiding about 175ml, with little left in my bladder. My IPSS score was 21.
My consultant introduced me to the Urolift procedure as a possibility. I also investigated prostate artery embolization with a potential ability to get on the UK trial – but my consultant (urologist) was very much against it. Despite the fact that my prostate is at the top end of the scale for Urolift, I eventually went for that option.
The Procedure
Under intravenous sedation I had 7 tags put in. The surgeon said afterwards that it went well technically, but that the affect on my symptoms was not predictable. I was able to void 180mls and 200mls in the recovery room according to the nurse – this was as I was coming round, so I went home without a catheter. I was given intravenous paracetamol and a morphine shot in the mouth for the pain, although the consultant said that the morphine would not help ...
Initial reaction
I had a bad time as I had to go to try to pee every 15 minutes all night and some of the next days. Often it was a very small amount (10mls or so) mainly blood. I rang the hospital and a duty nurse suggested that as long as some of the liquid was urine then I should tough it out – which I did, rather than coming to A&E for a potential catheter.
I managed to contain the pain with paracetamol and avoided taking codeine as I was concerned about being constipated.
For the next two days taking in a lot of water, I had feelings of unstoppable urgency every 20 minutes or so through day and night only able to void about 90mls at the most, the stream being poor and stopping frequently. My penis would sting sharply each time. After this time though the urine had turned to rose colour and then clear (almost). At one time out came some blood clots but the stream did not improve thereafter.
Current Situation
It is now 3 days since my procedure. For about 24hrs I have had little pain most of the time, and have not taken a painkiller. However every 40 minutes or so, sometimes much less, I feel I have to go and about 90ml is about the average. The urgency feeling seems to be felt in my penis itself.
The stream is poor, it interrupts often. I think that my bladder is not emptying as well as before. My penis itself aches badly just before and after urinating. I find that there is pressure from the back passage and when I fart I hurt behind and between the legs.
I know it is 'early days' but I am worried that my symptoms are much worse than before, and particularly there are no hints of a better flow, quite the opposite. I have been influenced by my consultant who had played down the effects of the procedure itself, and even talked of people having immediate improvement the next day …
I will post updates.
1 like, 37 replies
brooke40780 mikemh
Posted
How are you doing at this point?
dan93230 brooke40780
Posted
mikemh
Posted
Four days after the procedure, I was peeing 36 times in 24 hours including about 10 times during the night. The largest amount was about 150cc. I hurt and was taking paracetamol.
After that things seemed to get a little better. Peeing 18 times the next 24 hours with slightly larger quantities. I managed to get one 250cc the day after that. Then things stabilised for a few days. Although I had to pee about 20 times yesterday, I began to hope that things would get better if I started to train my bladder.
However, this morning at 6:45am, having had an hour and a half's sleep after the previous pee, I could get no stream at all. I managed eventually to get rid of 150cc, and then about 10 minutes later another 100cc. It is now nearly 5 hours since then and I have managed to get a thin stream a coupld of times.
I am a bit scared now. At 7am, I started taking anti-inflammatories (Ibuprofen) which I had not been taking before as doctor's in the past have warned me off them as I have a hiatus hernia.
It seems to me that things have taken a turn for the worse and there seems to be nothing I can do other than wait till I get full retention and then have to go to casualty department.
caringbah mikemh
Posted
mikemh caringbah
Posted
Chip_Bunker mikemh
Posted
What you're going through sounds awful. I hear it takes 4 to 8 weeks for things to start working properly after Urolift.
Did the doc put in a cath? Even though - after Urolift docs often do not place a cath.
I am also learning to self-cath. So I don't freak out when things aren't "flowing."
Can you self-cath after a Urolift?
Best,
Chip
Chip_Bunker mikemh
Posted
brooke40780 mikemh
Posted
mikemh brooke40780
Posted
After day 9 when I got scared the flow would stop, I started taking Ibuprofen max dose for 8 days and some paracetamol too. Luckily I did not get adverse effects from the Ibuprofen anti-inflammatory..
I wouldn't say that the situation improved much, but maybe a little. I stopped the Ibuprofen a few days ago and have not taken any paracetamol either (yet – see later).
I am drinking on average about 2.5 litres of liquid a day. On average I am peeing about 19 times in 24hrs, including about 5 times every night. The average quantity each time is about 130cc. The flow is generally poor, generally worse during the night. My impression is that over 100cc the situation gets worse with the flow almost stopping sometimes.
This is probably a worse situation than before the Urolift. Since things seem to have stabilised after the first 9 days or so, I am pessimistic about things getting any better.
However, I am considering starting up the anti-inflammatories and/or the pain killers to see if that might help although I do not have any real pain – sometimes some discomfort after peeing felt between my legs which may be coming from my prostate.
My follow up appointment is in two weeks with the specialist nurse, who has not replied to a message I left.
I have a little hope left that trying hard to train my bladder to go less often might in the end pay off. I am also hoping that my prostate is still a little inflamed and will calm down ….
mikemh
Posted
It is now 23 days since the procedure.
I was starting to be a little optimistic! I had had a couple of days when I was peeing a little more each time, and was hoping that that trend would continue so slowly but surely I would get better.
But then yesterday things turned back: After an afternoon nap, I found peeing had going and had some pains all around the region and up to my kidneys. For the rest of yesterday and yesterday night my peeing was often quite painful with the ache remaining after I had finished.
Today I have got a constant ache which seems to be my bladder. I have started taking a full dose of Ibuprofen and paracetamol again. I am now back to peeing only about 90cc each time instead of about 160cc a couple of days ago. The symptoms seem to match something called Interstitial Cystitis/ Painful Bladder Syndrome which I have found on the internet. Today is Sunday so there is nothing I can practically do...
So it may be that more than three weeks after the operation, I have contracted a nasty bladder condition which has totally ruined my mood. Two days ago, although the peeing was not wonderful, I was feeling well and fit and playing sports. Now I seem to have a permanent bladder ache and am afraid I am worse than I was before the operation.
mikemh
Posted
My appointment follow up with the specialist nurse is tomorrow.
My situation a month after the operation is not good. In fact yesterday evening and night, things seem to me to take a further turn for the worse in that I was almost unable to pee in the night, eventually succeeding with a thin stream and almost constant soreness at the front of my bladder/prostate.
Looking back at my records for the last three weeks, my condition does not seem to have improved. I am decidedly worse off than before the Urolift procedure.
I have recently not been taking any anti-inflammatories or pain killers as I don't want to mask the real situation before my follow up.
brooke40780 mikemh
Posted
I had UroLift done on 8/18, and not yet seeing substantial improvement at this point. The frequency has improved, but urgency is still there, and the stream / flow seems quite weak -- especially during the night and first thing in the morning (have to sit, and it takes awhile to pee; usually have to go a couple time in succession in the morning before I feel like I have voided properly). I haven't been measuring the output, and probably should. I stopped the FloMax and the Advil about a week after the procedure, and not sure what impact it would have if I continued (but don't feel like I should have to do so). The net is that I'm about back to where I was before the surgery (before I had gone in to acute retention a few weeks pre-surgery). I know from a UroDynamics test that my bladder has thickened / expanded due to the trauma of 4 years of blockage, so I may not ever see much improvement on the flow. My fear is that I stay where I am now, and retention of 250 - 300 CCs continues to put stress on my bladder.
Please keep us updated on how things evolve, and what feedback you get from your next appointment.
Best of luck!
mal7896 brooke40780
Posted
Just wondering if you have had any improvement. Hoping all is well
Mal
gipsy mikemh
Posted
Hi mike and all, just to re-activate this thread... I had urolift with 11 inserts and 93cc prostate and have been catheterised in ED 4 times since the procedure 1 month ago. no doctor follow up and a nurse/secretary who is impossible to deal with. Asked for doc to phone me but still waiting... they don't like failure... my story same as mike almost identical
Cheers Gipsy
gipsy mikemh
Posted
Just to clarify my last post: yes I know I am on the outer limits of urolift procedure at 93cc prostate, but as a patient I trusted my specialist urologist to give me the best advice. After the procedure in the recovery at the hospital, the doctor said to me "don't get disheartened" and " the procedure went well".
Well it has not gone well, I had the cath and flush removed and a TOV the next day after the procedure which failed painfully so the catheter went back in. No follow up so I took myself to the local community nurse during the Christmas break (because the doc wasnt available) 1 week later to remove the cath and try again with a slight improvement: After sex I was able to pass 300mm and then the whole thing shut down and I ended in ED with 2litres through a new catheter.
After calling the doctor's secretary/nurse on her mobile phone she called me in 1 week later for another TOV and she insisted on keeping my catheter blocked, then removed it and told me not to void for a total of 5 hours so she could measure my extended bladder with an ultrasound scan... 400mm+ and then sent me to TOV with expected result... no void so I suspect she put me through the very thing that caused the retention in the first place!
I have had a catheter for 8 months now since I was rushed to ED with retention and kidney failure (drained 3litres in ED) and the doctor's plan was to reduce my prostate from 140cc to below 100cc using Dutasteride. When I reached 93cc he avised me that urolift was now an option and advised me to have it.
So, if as a patient we should comply with the doctor's plan of action, trusting his expertise to guide us, only to be told AFTER the procedure that I was on the outer limits for the procedure, should I be sceptical about the motives and vested interest in the medical profession? I am now highly suspicious about the vested interest of doctors who advise a procedure, knowing that it may not be successful. I am uninsured and have paid well over $11000 so far and wonder if the dollars are more important than the outcome.
I wait for the phone call, and hope for improvement but I am losing patience in any positive outcome. I still believe that urolift is a good procedure (no pain, little blood etc.etc.) but as the old saying goes: Caveat Emptor... buyer beware!
Cheers Gipsy
mikemh gipsy
Posted
Hi Gipsy
?I had lost sight of this forum for a while. I wonder how you are doing now.
?I will quickly update on my progress.
?Actually, as a result of the detailed problems I documented above, I paid for a 'look see' operation by the Urologist. He found an issue with one of the tags, removed it and added some more. So now I have 9 tags - I am told this is close to a world record!
?That operation was 18 months ago now. For a while things were better. In fact for a year but about 7 months ago I started to have pains when walking or after doing exercise. They were put down to be prostatitis (see https://patient.info/forums/discuss/prostatitis-or-something-else-how-do-i-get-a-diagnosis--563044?) but I am now wondering whether the tags are fouling tissue and causing pain.
?I wonder whether anyone has experienced similar problems after Urolift
mikemh
Posted