Latest Urology Appointment
Posted , 18 users are following.
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
arlington stephen54687
Posted
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!
derek76 arlington
Posted
jimjames derek76
Posted
@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
derek76 jimjames
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reg52510 arlington
Posted
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
arlington reg52510
Posted
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.
jimjames reg52510
Posted
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
keith42667 arlington
Posted
The thing I remember the most about the emergency room nurse was how fast she took out the catheter. I was under the impression you should pull it out about as slow & carefully as you put it in. She just pulled it right out in about 2 seconds.
brian34488 stephen54687
Posted
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.
stephen54687 brian34488
Posted
Thank you, Brian, for your reply which I have read with interest. It is surprising that even the so called professionals appear to contradict themselves at times especially when it comes to questions about negative side effects from their procedures. It only takes a slight error with the scalpel/laser or whatever other cutting tool to cause years of discomfort and misery to the patient. Sometimes I get the feeling that doctors don't care what happens to you once you have left the operating theatre.
You say you have yet to have an operation but have decided to go with FLA, do you have a date for that or is it just your procedure of choice?
As for the kidney damage, I knew, from reading up on the subject over the years, that bladder outlet obstruction can cause such damage but imagined, as one does, 'That can't apply to me. It's not that bad.' So it comes as a bit of a shock when a doctor says it to your face.
I hope your procedure, when you have it, is a complete success and that it will put an end to the long years of discomfort and inconvenience which so many of us have had to endure. I will have to look FLA up as I don't know anything about it but if it is very expensive then I dare say it won't be for me.
brian34488 stephen54687
Posted
you asked if I have a date for FLA, I have booked my FLA with Dr K and will keep you informed as to what happens, thanks for your kind wishes, look after your self too.
oldbuzzard stephen54687
Posted
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.
arlington oldbuzzard
Posted
derek76 oldbuzzard
Posted
reg52510 derek76
Posted
I haven't tried it yet but I'm concerned that I might have to.
oldbuzzard derek76
Posted
I don't currently self cath. I did very occasionally (as in once every 18 months or so) when I would go into semi retention. I had Rezum done about 18 months ago and was a slow healer, so I self cathed for roughly 3-4 weeks then. The procedure helped enough that I don't foresee needing to unless/until things get worse again.
That said, I keep a couple of catheters in my travel bag and am glad my urologist showed me how to self cath the one time I did go into full retention. Knowing that if I ever have a problem, its an extra 45 seconds and not a trip to the ER and a Foley is a real comfort. The one time I had a problem on a business trip that cath in my bag was a true god send.
derek76 oldbuzzard
Posted