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Latest Urology Appointment

Posted , 18 users are following.

stephen54687
stephen54687

Hi all,

Firstly a little background......

I have been suffering with LUTS for quite some time now and was diagnosed with BPH around 5 years ago when I was prescribed Tamsulosin for my poor flow. After 2 years, when the Tamsulosin appeared to be losing its efficacy, I was prescribed Finasteride to take alongside it. I have now been taking Finasteride for three years.

?About 18 months ago I was referred to the urology department at the hospital because my frequency had increased to such an extent that I was wanting to urinate every 40 minutes. I was prescribed Mirabegron after a disastrous trial of Vesicare.

In August, on my third visit to the hospital, the consultant ordered a cystoscopy and urodynamic testing, both of which I had in September.

That, briefly, brings us to my latest appointment which I had yesterday.

I went into the appointment with, from what I had been told by the nurse doing the urodynamics and the doctor performing the cystoscopy, a good idea of what the consultant was going to say, that I would need a TURP.

Now, from what I have read on this forum and elsewhere, I came to the conclusion that I would rather persevere with the medication than have this particular procedure and so this is what I had in my mind when I entered the consulting room.

The consultant explained that the cystoscopy showed nothing 'sinister' in the form of pre cancerous indicators but my bladder is trabeculated. The urodynamic test revealled that my bladder is excerting 'immense pressure' in order to expel  a slow flow of urine and that what needs to be done is a 're-bore' of the prostate to remove the blockage.

I explained that I was not too keen to have a TURP with all the associated risks, in particular the risk of urinary incontinence to which he replied, 'Yes, in 2% of cases.'

I asked if I could just carry on with the medication but he said, 'It is time to do something about this as your symptoms will only get worse over time leading to an enlaged bladder which, in turn, can cause kidney damage and if that occurs then there is no more you.'

This all sounded rather more serious than I had expected so I asked what urgency did he feel was indicated to 'take action'. He replied 'Ideally 6 months to a year'.

I again voiced my concerns with regard to TURP and said I had heard that the NHS was adopting the Urolift procedure to which he replied 'That is correct, as you have decided that TURP is not for you would you like me to refer you so you can have a chat to see if Urolift would benefit you?' I said that I don't appear to have a choice to which he replied 'There is always a choice such as self catherterisation but we need to do something for you.'

So, instead of leaving the consultation with my intended 'keep taking the tablets' I left with the promise of a referral and an appointment in the post.

What surpsised me most was the gravity with which he emphasised that I need to do something 'as soon as possible' otherwise things will inevitably worsen.

Do you think he is over exagerating the urgency to 'take action' or would you, in my shoes, carry on with the medication and avoid any sort of procedure? 

I know, from reading this forum, that I am not alone in how down hearted I feel due to the symptoms of BPH but I have to admit that yesterday's appointment has had a profound effect on my mood.

Best wishes,

Steve. 

1 like, 61 replies

61 Replies

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  • paul96555
    paul96555 stephen54687

    Posted

    At least he offered you the choice of urolift.  Sounds like good advice to me. 
  • derek76
    derek76 stephen54687

    Posted

    See this link I put up the other day

    https://patient.info/forums/discuss/holep-patient-guide-from-major-london-hosital-617409

    And also from their web site:

    We are pleased to offer the most modern techniques in urology, including the holmium laser and green light laser. While the two lasers are fundamentally different and used for different purposes, they can both be a key treatment for a range of conditions.

    Prostate enlargement

    Both types of laser can be used for treating enlarged prostates. However, we favour the holmium laser, as it has been shown to have better long-term results, which means avoiding the need for further surgery in the future. The holmium laser can be used to ablate (burn away) or enucleate (core out) an enlarged prostate.

    The hospital where I had my GL in 2004 also  went over to Holep a few years ago probably as it saves tissue for histology but they still do GL as it is now the recommended NHS procedure by NICE with it estimated that 13,000 will be done each year..

     

  • david41064
    david41064 stephen54687

    Posted

    Go for PAE.  Now covered by Medicare in USA.  It has great success rate depending on the size of your prostate.  Contact Dr. Isaacson at UNC in North Carolina.  Stay away from Urologists for now.
  • Pepasan
    Pepasan stephen54687

    Posted

    As far as I know kidney damage, whilst irremediable once it happens, has 6 stages and doesn't happen overnight. This can be easily tested by your gp with a blood test. Maybe this should be known before you make any big decisions?

  • glenn77
    glenn77 stephen54687

    Posted

    Sounds close to the story that led me to a quick TURP decision.  I actually asked about GL, and was told, OK we'll do GL procedure.  Now, 19 months, I can very incontinent, living in condom catheters and collection bags during the day and Depends at night.

    My research suggested an incontinence rate of only 0.5% from TURP.   I believe, but can't prove, that my doctor was not well trained and experience with the GL procedure.

    So my recommendation to you would be, if you elect surgery, make sure the doctor is highly skilled and trained at doing the specific procedure he would do.  Don't be shy about asking how many he does per month and per year.  And ask about the most recent adverse outcomes he's had, and why.

    Glenn

    • stephen54687
      stephen54687 glenn77

      Posted

      Hi Glenn, thanks for your reply.

      Sorry to hear of the adverse results of your GL procedure. Even the best procedure will not turn out as expected if it is not carried out correctly. I sincerely hope that your incontinence problem is not permanent and that, even after 19 months, you will regain control. 

      My very best wishes to you.

  • jimjames
    jimjames stephen54687

    Posted

    @ stephens: Do you think he is over exaggerating the urgency to 'take action' or would you, in my shoes, carry on with the medication and avoid any sort of procedure? 

    ---------------------------------

    It can be a judgement call but a bladder/kidney ultrasound study would be helpful if you haven't already had it. The ultrasound, along with kidney function blood tests, would tell you if the kidneys are being affected which is the main worry. It would also picture whatever damage (trabeculation, etc) has been done to your bladder due to the high pressures caused by the prostatic obstruction. 

    This is not to say that you should wait until you have hydronephrosis (water refluxed back into the kidneys), and in fact "taking action" with the condition you describe may be prudent. 

    The least invasive action might be to first switch to a different muscle relaxer, such as 5mg Daily Cialis, and see if that helps more. If not, then there are a number of newer options available with a better side effect profile than TURP. Besides the very low percentage of incontinence and impotence, there is a significant chance of retrograde ejaculation (dry orgasms) with TURP. 

    Urolift is one of the newer options and we have several threads going on that right now. Do you have a large median lobe? Urolift doesn't seem to work that well in those cases.

    Then there's self catheterization (CIC) which your doctor mentioned. I, and several others here, chose it as a long term solution, but it also can be an excellent short term "bridge" solution, while you explore existing TURP options, or wait for even better ones down the road. 

    CIC can immediately start protecting the kidneys as well, if not better, than any surgery including TURP, because it empties the bladder completely every time you cath. We also have several threads going on CIC, or you can just ask questions or send me a PM. 

    But first, I'd get that bladder/kidney ultrasound. Also, what is your post void residual (PVR), they should be doing that every appointment with a bladder scan at your doctor's office. 

    I'd also get off the Finesteride, because it doesn't seem like it's doing you any good.

    As to the Mirabegon, I'd revisit that after analyzing both your bladder/kidney ultrasound, your PVR values, as well as doing a 24 hour void log, where you mark down the time and amount of each void. Because if the frequency is being caused by a high PVR, then I think either another medication (like Cialis), a procedure, or CIC, would be a better solution. 

    Jim

    • arlington
      arlington jimjames

      Posted

      Thanks Jimjames ... and, to be fair, I did try the PAE (without success).
    • stephen54687
      stephen54687 jimjames

      Posted

      Hi Jimjames,

      Thank you for taking the time and trouble to reply and for the information you give.

      My PVR was 30ml, and 70ml on my first and second scan respectively but, after I ceased my medication for a week prior to my urodynamic test it was very much higher when I voided and they used a catheter to get the PVR. I cannot recall the exact figure but I think it was a couple of hundred mls. Stopping the Tamsulosin made it very difficult to urinate and quite painful. I could definitely 'feel' the 'waves' of pressure as I tried to go. When I measured it I was passing just 50 mls, stopping, 50 mls, stopping and so on and the most I would pass would be between 150 ml and 200 ml. I took a Tamsulosin as soon as I got home, around 10:30 AM, and by the evening I was able to pass urine much easier and without much discomfort so the drug certainly has an effect without which I feel I would have had to have some form of intervention some time ago.

    • lew82832
      lew82832 jimjames

      Posted

      I wanted to use Cialis, but after taking the first pill, I got severe cramps in my lower legs, which lasted the whole day. It was a 5mg, I wonder is a smaller dose would not cause such pain?
    • derek76
      derek76 lew82832

      Posted

      5mg is the lowest dose. As they are enteric coated they bypass the stomach so do not spilt them as they need to protected from your stomach acid.

       

    • jimjames
      jimjames lew82832

      Posted

      Lew and Derek,

      Don't know about the UK, but in the States Cialis comes in formulations of 20mg, 10mg, 5mg and 2.5mg. They are film coated, not "enteric coated", so any of these pills can be cut in half, or cut anyway you like.  Another approach would be to take a 5mg pill every other day although not sure what the steady-state serum levels would be given its half life. By way of comparision, the steady-state serum levl of a 5mg Cialis is 8mg (5x1.6) after around 5 days of taking 5mg daily.

      Jim

      Jim

    • derek76
      derek76 jimjames

      Posted

      Thank you I had not realised they have a 2.5mg version.

      The patient information leaflet says: Do not split CIALIS tablets; entire dose should be taken so I assumed they are enteric coated.

    • jimjames
      jimjames derek76

      Posted

      @Derek: The patient information leaflet says: Do not split CIALIS tablets; entire dose should be taken so I assumed they are enteric coated.

      -------------

      All that means I assume is that if you cut the pills, you get a lower dose, but that is the intent. The manufacturer also makes less money when you cut the pills, so there's that.  Like the other ED pills -- Viagra and Levitra -- Cialis is not enteric coated and can be cut. 

      Jim

    • lew82832
      lew82832 jimjames

      Posted

      Thanks Jim.

      I split my 5mg tablet and took it, I hope it works without that leg cramp, may as well try it cause they were expensive pills to not use.

    • kenneth1955
      kenneth1955 lew82832

      Posted

      Sometime they work different on all men.  I have tried the 20mg pills there ok and did not upset me.  Maybe it's not the pills. Now worried about them right now. Deal with prostatitis and this is the first time it is the pits.  Had to quick poker tonight with my friends. Groin hurts bladder uncomfortable back on right side.  Was hard to seat for long.  Been taking my meds for a week.  After I get my son from work going to take a hot bath to see if I can relax.  If this does not go away by Monday  I will be calling my Urologist.  Never had it this bad   Take care all  Ken    

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