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
keith42667 stephen54687
Posted
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.
jimjames keith42667
Posted
Hi Keith,
Glad CIC is working out for you and you got off those drugs and away from your old urologist. Really no reason for meds in most cases if you self cath.
In general, kidney function can improve very quickly (days or weeks) after CIC, but I still advise a kidney/bladder ultrasound every year or so just to keep things honest. Totally non invasive so no real harm.
Strange they gave you a syringe with saline and no instructions but probably they didn't know either
FWIW you're right in that you can do a bladder irrigation with such a setup but that's a special case situation and not something I've ever heard of someone going home with just for garden variety CIC. The blood you saw is very normal for the first few weeks of CIC until the body adjusts.
Are you doing any natural voids prior to CIC? Always a good idea to try a natural void first, if you can. It not only cleans out the urethra but also exercises the detrussors. And if you do a natural void make sure to add that amount to the cath amount to figure out total bladder volume, which is how much your bladder is holding at any one time. Ideally, you will want to keep that 400ml or below (total bladder volume not just residual) for optimal bladder rehabilitation. If you're holding more than that, simply increase your cath frequency.
Jim
keith42667 jimjames
Posted
>Are you doing any natural voids prior to CIC? Always a good idea to try a natural void first, if you can.<< Yep, I'm doing that. >>If you're holding more than that, simply increase your cath frequency.>> Yep, got it.
I was going by the clock at first. Now my urges seem to be gradually getting more frequent - some more urgent that others. I remembert once someone said if you feel like it, go ahead and cath. I'm using fr12 just to minimize any possible trauma although I have no sign of that. So.... its been very erratic. Sometimes after cathing around 2AM I sleep until say, 8:30 and sometimes when I get upat tat time I don't feel anything for a long time. Often though, the 2nd or 3rd one ends up being over 450 if I'm not careful and yes, if I ever get to that point I can usually NV @ 30 to 80cc. before and add it to total which often is almost 450 or more. Yesterday I played 18 holes of golf with no problem; cic right before we left. But last week I tried that; didn't take my catheters; and had to hold it for the last few holes. I could feel it in my bladder too.
jimjames keith42667
Posted
That might have been me that said it. Never hurts to throw in an extra cath now and then. In the past, I've sometimes cathed much more than I needed some days, just to give my bladder a rest. I talk about it a little in the "on/off" cathing thread. As to trying to predict when to cath, the kidneys seem to have a mind of their own. What you're discovering is perfectly normal. Sometimes your bladder remains relatively empty for a number of hours and sometimes it seems to fill right after you cath. Lots of variables going on.
Jim
kenneth1955 stephen54687
Posted
stephen54687 kenneth1955
Posted
Hi Kenneth,
Thank you for your reply.
I have read some of your other posts and you certainly make a good case for the Urolift procedure. I am pleased to hear it is working well for you. I have read so many negative things about TURP that I would rather avoid it if possible. The trouble with all of this is that if you don't have the necessary funds to go private you have to rely on what the NHS (in England) has to offer. Up until last April Urolift was only available privately until a few NHS hospitals started doing trials. I think, eventually, it may well become the 'treatment of choice' for the NHS as it is more time and cost effective.
kenneth1955 stephen54687
Posted
dennis47445 stephen54687
Posted
Stephen, for now do the self catherization or you may end up like me. My bladder, is so stretched out, that I have a hard time urinating on my own. When you self catherize, you at least letting your bladder shrink down to what it supposed to do. If not, your bladder, will be always stretched out, causing it to lose its elasticity, then you will have a bladder, that won't be able to squeeze the urine out of it! The muscles, of the bladder, won't be able to do its job. I have to self-catherize two to four times a day. It's the best feeling after I do it, because the bladder is empty.
stephen54687 dennis47445
Posted
Hello Dennis,
Thank you for your reply. I am sorry to hear that your bladder has been affected so badly. May I ask how long you have suffered with BPH and whether this was the only factor which has led to this situation? Were you not offered any 'procedures' even a TURP to avoid it?
At the moment I am continuing with my medication until I receive a referral to discuss whether I am a suitable candidate for Urolift, if I am then I think I may go down that route and, hopefully, I will be able to avoid the situation which you find yourself in.
Take care.
kenneth1955 stephen54687
Posted
Dennis I am so sorry that you are having a problem. Stephen I think you for helping Dennis even you deal with your own problem. I thank all men on this site for there in put. Years ago in my father's time I don't think they talked about there prostate. In todays time we are more straight forward and we can talk to our friends family and other men on sites like this. When we were young and first found out about pleasure we were ready in a minute. Today it may take us a little longer but the out come is the same. If we have a problem the first thing a doctor wants to do is cut away at our prostate. Your prostate may not be the problem. All that will do is cause sexual problems and other side effects
kenneth1955
Posted
Next. When picking a procedure don't pick anything that you will not be able to deal with the side effects. Doctors will tell you all will be the same. Not all the time. Pick a less evasive procedure or stay with CIC. We should not have to give up one for the other. good luck you all of you and god bless Ken
jimjames dennis47445
Posted
Hi Dennis,
Forgot if I previously asked, but how much urine are you carrying around. That would be the combined volume of what you cath and any natural void preceding it. You want to keep it under 400ml for the best rehab potential. If it's over, then increase the frequency that you cath. Some of us here started with very stretched bladders and almost zero sensation and now our bladders are functioning much better because we decompressed the bladder by keeping volumes down with self cathing.
Jim
dennis47445 jimjames
Posted
I guess I carry around 2 to 300 MLs normally. I've been cathing 426 days so far. I cath between 2 to 3 times a day. I don;'t see any change so far with my voiding. Thanks for the suggestion.
dennis47445 stephen54687
Posted
dennis47445 kenneth1955
Posted
Ken, I agree. Stay with the CIC. Uro's may not like it, because no money for them if you stick to CIC. I can see how they would feel that way, after going to college and spending all that time and money to be a urologist, then no big bucks! Kind of a let down, and I can see how they would rationalize their advocacy for surgeries. That's why it's great to have forums such as this one, where I as common folk, am able to learn of other ways to improve my prostate and bladder health. Mahalo, to all on this forum!
kenneth1955 dennis47445
Posted
dennis47445 stephen54687
Posted
I've had prostate problems, for around 15 years. My opinion, if I had started self-cathing earlier on, I think I would be in better shape today. I am 69 years old in a month. Perhaps, my bladder, wouldn't be stretched out, like it is now. Hope and wish you great results!
derek76 dennis47445
Posted
jimjames dennis47445
Posted
@dennis: I can see how they would feel that way, after going to college and spending all that time and money to be a urologist, then no big bucks!
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Ironic that basically a straw can be as effective (maybe even more effective) in many cases than a sophisticated and high tech procedure with a lot of development money behind it. Self cathing is sort of like the Occam's Razor of medical procedures.
Jim
derek76 jimjames
Posted
jimjames derek76
Posted
@Derek: However it does not stop your prostate from continuing to grow. Report this
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Nor does TURP, GL, or other procedures, but fortunately studies show that LUTS often isn't related to prostate size alone.
I've been self cathing now for over three years and my prostate hasn't grown significantly during that time. If it did, it might (or might not) start affecting my natural voids but probably would not make much of a difference with the process of self cathing. What has happened, however, is that my bladder has been rehabilitated to the point where I don't have to self cath that often and symptomatically I'm so close to normal function that having any time of surgery or procedure really doesn't make sense now if I compare the risks to the rewards.
Of course that decision could change in the future if either my symptoms got worse, or if a new procedure came with both less risk and no sexual side effects. But right now I would not risk losing the near normal function I have today by trying anything currently available.
Jim
derek76 jimjames
Posted
glenn77 jimjames
Posted
Just yesterday, I found a video of a talk that my urologist had given to a group of men about prostate issues. In his talk, he mentioned two rarely mentioned contributors to difficulty in urination and too many night-time trips to the toilet. The first was on-going bowel movement issues. While he didn't discuss it in detail, I know that I've had a few times where being a bit constipated coincided with difficulty in urinating. Since the urethra and the bowel are together in a very tight space, that makes sense. Nocturia, getting up frequently at night, can have as its root cause sleep disturbance. Consequently, you wake up and then decide, I need to go to the bathroom, even though you may have only a moderate amount in the bladder. I have a friend whose younger urologist had told him the same thing. So, he was given some mild sleep medication, and he now only gets up once or twice at night, and he awakes fully rested.
Glenn
reg52510 glenn77
Posted
I agree Glen. My uro told me that my prostate was only part of my problem; bladder and sleep issues also play a part. If I get up at 3 AM and have a bm, I am usually good for the rest of the night. Otherwise, I'll be up once or twice more before morning. Even flatulance can help with nocturia and to get a stream started.
jimjames glenn77
Posted
So, in the case you mentioned, a mild sleep medication might be helpful if the cause of nocturia was a sleep issue, but the same sleep medication could be counter productive and harmful if the cause was for example a hormonal or heart related issue which shifted urination from primarily daytime to night time. In this case, the sleep medication could end up causing the bladder to hold more than it should causing distension and other problems.
In addition to knowing your PVR, a 24 hour void and intake log would be a good first very simple step in help determining what type of nocturia you have before treating.
Jim
hank1953 glenn77
Posted
dennis47445 derek76
Posted
If you don't mind, how old are you?