Latest Urology Appointment

Men's health
1

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. 

2

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

3

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..

 

4

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.

5

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?

6

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

7

@ 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? 

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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

8

He can't as he is in England.

9

Steve,

I've been self cathing for 3 years while waiting for another viable procedure to come along.  It's not nearly as hard as you think and, with practice, becomes much smoother over time.  It alleviates the bladder pressure and is within your control.  You can learn how to do it from a nurse in 5 minutes.  This way, at least your not doing any further damage while considering your other options (even if for several years).  I've found the "coloplast speedi-cath compact male" catheter works the best for me.  I still take an alpha-blocker but self-cathing often doesn't require medication.  My laymen's recommendation is to discuss this w/ your Dr.

In the meantime I'm following this forum and particularly those who've had the FLA procedure w/ Dr. K in Houston.

Best of luck!

10

There are plenty of procedures around and you doubt them all?  You should be lost with the choice we have nowadays..

11

Hi Steve, your sad situation reflects mine like a mirror, I too have yet to have an operation and its all true about damage to bladder and kidney, ps dont push when you pee as this will ruin your bladder much quicker and push back pressure into your kidney. I researched the surgery options as best as I could with very limited knowledge but have been told different stories  even by urology surgeons for example; one said if I have turp I will not end up incontinent but offered no guarantee but later mentioned most incontinence starts with a second opp, another said to me when I questioned him asking if I have turp and you scrape away a portion of my bladder neck due to a median lobe pushing against my bladder, wont that disable the upper sphincter valve which not only stops sperm going into the bladder but also helps the bladder neck hold the urine in the bladder and therefore leave urine in the prostate 24/7,and therefore that will leave only the lower sphincter prostate valve to hold back the urine-he said no it will not hold the urine,I said WHAT? DOES THAT MEAN I WILL BE INCONTINENT? he said very firmly YES!, again I asked him the same question and again he said YES! he later whispered to me "we don't know depending on each person if the lower valve will hold the urine". He may be talking rubbish but that is what he said. I then looked at all the other options and hoped to find an escape with the least damage and best outcome and after reading much conflicting info I decided to go with focal laser ablation which does not go up through the penis and does not remove any parts, it goes up the rectum and uses a very small fibre laser much smaller than turp laser tools, and can operate to within 1 mm close to a nerve, it basically removes prostate tissue that is closing the urethra etc and done under live mri so they see exactly where they are so as to avoid damaging important parts such as nerve bundles for erection etc, they have been doing this for prostate and other cncer for some time and now do it for bph, the result is no damage to the penis,or urethra and sphincter valves etc are much less at risk but its not cheap but at the end of the day you have to decide whats important, hope this helps.

12

@Arlington: I've been self cathing for 3 years while waiting for another viable procedure to come along.

Derek to Arlington: There are plenty of procedures around and you doubt them all?  You should be lost with the choice we have nowadays.. 

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Hi Derek,

I'm with Arlington here. Yes, there are plenty of procedures around, but for some of us, waiting for something better makes sense and self cathing enables you to wait. Another way to look at self cathing is simply an extension of watchful waiting without drugs.

Jim

 

13

I waited ten years for GL to come along and it worked. Now it is in its third version and it is even better. Personally I would have any procedure that is now around apart from TURP. They all have a decent success rate. 

14

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

15

I'm not at the point yet where I need to cath but I'm concerned I might get there at some inopportune time. Do you think it's necessary to be trained to do it,or is it easy enough that one could learn on their own? 

Reg

16

I agree with jimjames on this. Also with those who recommend CiC. WHile you decide what, if anything to do, CiC will keep you healthy, functional and with practice, be discrete and keep your bladder from deteriorating. If you have a large median lobe, Urolift/PAE won't help, but Rezum, FLA or Itind might.

In the meantime, self cathing will keep you going for as long as you want/need it to.

17

Agreed

18

You could learn on your own; however, I think it's much better to be trained by a nurse.  Took me 5 minutes, reduced stress and then I knew how to do it.

19

In an ideal world, you would be shown how to do it by a trained nurse or PA who is knowledgeable not only in technique but in determining which catheter is the best to use, including size, type and brand.  In the real world, you likely won't find all that in one person, and in some cases would be better off if you just learned on your own. 

Here, we have several self cathing threads that can walk you through the process as well as make recommendations on what catheters to use. There are also a number of how-to videos on Youtube. 

If you don't want to spend the time researching it out, send me a PM and I can get you started in about five minutes. It's not rocket science but there are several choices you can make so things go easier. 

Jim

20

Very helpful, thank you Stephen.  CIC is working well for me.  I've been doing it @5 months now. I've never tried drugs although my Uro prescribed the Flomax stuff.. I never picked it up from the pharmacy.  I'm so glad that I have the internet & I was able to find advocacy for self-cathing.  My instincts told me that doing CIC while waiting for surgery seemed a viable long-term strategy, but I wouldn't have known.  My Uro (actually his P.A.) also told me that they want me to take drugs, do surgery, or something if I was going to self-cath with their blessing & supervision.  So I just haven't seen them again.  I think I need to go in to do some of the testing Jim James recommends such as a bladder/kidney scan; but soon after I started emptying my bladder completely my PSA & my creatine levels in my blood "started heading in the right direction".  That was months ago but I feel 100% better.  I had no idea I was retaining so much fluid even after I would force a small amount out.  I guess gradually I just got used to that full feeling; kind of hard to discern.  But the empty bladder feeling is great.  I have to be careful not to get dehydrated though.  

At first my GP made an appointment for the Urologist & wanted me to self-catheterize 3 times a day.  My little country doc only had one red rubber catheter in the office and its an hour drive to the city.  So they let me take it home.  I used it once and threw it away not knowing it was reusable.  They also gave me a syringe with saline solution in it with no explaination.  I figured out that I was supposed to flush things out after catheterizing.  I wish I'd done that because after using the red rubber (must have been about a FR16) I had some blood clots come out and my urine was red for a few days; not a lot.  Then they sent me to NORCO to buy some disposalble catheters while awaiting the Uro appoint.  I bought a box of FR14 coloplast straight catheters.  I didn't like having to use the lube but now I've discovered the hydrophillic which eliminates a time comsuming step & I'm a happy camper.  

Now I do about 5 a day.  I get an urge at about 350 to 400.  I know that if I have a strong urge I'm probably retaining @400cc, but already I can see that threshold dropping.  I have to use the clock & my internal monitor so as to keep my residual below 400cc. 

I don't like the idea of taking drugs that alter any muscle actions and has side-effects.  Even if its just a small bladder neck or some muscle like that.