Self Catherization. An alternative to Turp, Greenlight, HoLEP...?

Steve,

Do you have any natural voids at all now? If not, at what volume are you starting to get the urge to pee? If you're not getting natural voids and peeing at 350ml, you might try waiting unitl you have say 500ml or even 600ml and then see if you can void. This may seem to contradict the bladder rehab protocol of not carrying more than 400ml at any one time, however allowing greater volumes from time to time should not do much harm and may jump start the natural void reflex. In any event, it does sound like you're making some progress by getting the urge.

Jim

Jim

I cannot void naturally at all now.  It is a little after 5:00 AM here and I just got woken up by an urge.  Output from cath was 225 ml.  For the last week, most outputs from cath when I feel the urge are under 300 ml.  For the last week 1 1/2 weeks the stream out of the cath is stronger.

I have been trying not to go over 400 ml to maintain the bladder rehab protocol and recently modified my diet by reducing certain spices when cooking which have correlated with higher over-night volumes.  I get it on allowing greater volumes from time to time to start the void reflex.

When I remember, when I feel the urge, I try a few minutes of natural voiding before doing the cath but that has not worked so far.  I have tried removing the cath in the middle of self-cathing but then I stop.  Also under those attempts, I wish that I had more than 2 hands to work with.

I am just trying to figure out a good procedure for the trying the transition as I have the self-cath process down well, except maybe in the middle of the night when I am half a sleep.  At least it is not 4 to 5 times a night like before  

Steve,

Like I said in the previous post, I would then trying delaying urination until your bladder was holding 400-600 ml and see if that will allow you a natural void with the higher bladder pressure. In general, good to keep total bladder volume under 400ml but I don't see any harm letting it go a little over for a short period of time to see you can stimulate a natural void.

Jim

Having earlier urges means your bladder is getting better, not as stretched as before. However, either your bladder is still very weak or there is still a substantial obstruction somewhere, or both. CIC does not guarantee natural voiding, as many people here know. Hank

Hank, Where are you getting that information? "Having urges earlier means you bladder is getting better" ?

Steve I agree with Hank, you must have a serious obstruction if no pee at all is coming out, I think you need to have surgery why suffer for who knows how long wondering how long it will take for your bladder to recover, assuming that is even possible? Finasteride by the way will kill you libido and may even lead to impotence.

Hi Hank,

I figure that the bladder is getting better and is less stretched than before but still weak and that there is also an obstruction due to the BPH.  I am only about 4 months into this whole process and about  2 1/2 months into the combined flomax-finasteride treatmet though.  I have to contact the urologist about the urodynmics tests in about a month.

Steve 

Hi Mike,

As I mentioned on the Rezum forum, I am fortunate to have a family member who has been an MD for over 40 years and I have known for over 60.  That is where I am getting some of my information from.

Me and the MD family member agree with the urologist that I need to give the bladder more time to recover before surgery is even considered. Given that they took about 2000 ml of pee out of me when the Foley was put in we know that the bladder was badly stretched.

I have not seen any change in my libido or any impotence problems but my bald spot is getting smaller which finasteride is known to do

Steve 

@Mike: I think you need to have surgery why suffer for who knows how long wondering how long it will take for your bladder to recover, assuming that is even possible?

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Mike,

When your bladder is atonic there is often no sensation being sent via the nerves to tell you it's time to void. The fact that he's now getting those urges suggests that the bladder is getting better. "No pee coming out" is not necessarily just an obstructive problem but a synergy between bladder and obstruction. Now that sensation is coming back, it's possible so will some degree of natural voids. CIC will protect his bladder and kidneys as well as any surgery. Whether to CIC and live with things as they are, continue CIC in the hope of further progress, or have a surgery -- all are reasonable choices. CIC may not be for some, but surgeries also have their own set of issues. We have had men here who have rehabbed their bladder to one degree or another with CIC. I'm one of them.

Jim

Jim

HI Mike, everyone knows that earlier urges mean you are getting your nerve response back, telling you your bladder is getting full, versus before when it was too stretched. As a senior of this forum, you should have known that. 😀 Actually, it happened to me as well. Hank

Steve, it's good that you are not rushing to have surgery. CIC is the way if you can do it without problems, at least for a while, since it protect your kidneys. However, if you have bad urges and then can only get 200ml then you may have OAB as well. Hank

 

Hank, definitely not OAB.  It is bad BPH + AUR = distended atonic bladder. CIC will work on the bladder while flomax + finasteride will work on the prostate.  Time will tell on what works and what does not.  I am in no rush for surgery. Steve 

Steve,

OAB often coexists with BPH and retention, and you may only be noticing it now because your nerve signaling is coming back because your bladder is healing. But it really doesn't matter what you call it, the fact that you are starting to feel the void sensation has to be seen as positive. If it were me, the next step would be to hold back the void sensation until your bladder is holding 400-500ml, and then try and void. This is called bladder retraining as opposed to bladder rehab. They both have a place depending on symptons. In the end, the concept is to get things operating normally, or at least more normally than they are now. I am glad you are in no rush for surgery because everything points to that you're making progress with CIC.

Jim

Hank,

Thanks for the info. I didn't understand Steve did not have urges to pee when I read the description. My bad !

Michael

Thanks for the info. It's all confusing, on the one hand you can have an overactive bladder and on the other hand atonic.

Hi yes good point to recover bladder before surgery. Sorry for misinformation.

My nephew in his late 20s took finasteride for bald patch and it caused some ED so he quit. I also was on finasteride for a while and it didn't cause problems as such but I did feel kind of listless. I decided to stop when I found out about potential side effects. Which Urologist never mentioned!

That's because western medicine has so many d*mn names for diseases and conditions! When a bladder gets messed up it doesn't necessarily fall into a neat little box, so yes, you can have OAB and underactive bladder caused by bladder outlet obstruction at the same time. It's just a messed up bladder

Jim

You can look up the possible side effects of finasteride on the internet.  I do not like the flomax side effect of drowsiness.  It makes me want to sleep more than I should.  I am taking too many afternoon naps when I should be doing things. 

Steve, naps are good for you. And don't blame it on Flomax. 😀 Hank

Hank, OK, I won't blame the Flomax.  I will blame the cat instead since she naps a lot Steve 

Hi Jim

So you are saying that once the urges come back to some extent, then one should try and ignore them if one knows they are not retaining over 400-500 cc?  I'm not trying to pin you down on your excellent advise... its just that I'm there.  I've only been doing cic for about 11 months, and my urges have definitely increased in frequency and intensity.  In fact, sometimes they're so intense that it will be hard to ignore it for a time; but it usually DOES go away completely for awhile.  Then I feel it again; kind of suddenly and, often, after doing an nv of @50 cc I am only retaining 250 or 300cc.  Sometimes less.  The only time I'm not getting urges at all are after I sleep for about 5 or 6 hrs.  When I get up from bed I try walking around and doing some knee bends sometimes but I usually have to sort of do that first cath of the day by the clock.  I'm sure if I waited a couple of hours after getting up I'd feel an urge.  Usually I do wait at least 30 min.

The urge coming back is good and can be a sign of bladder rehab.  This generally means your bladder is now able to signal the brain through the nervous system that it's time to void.

That said, a "normal" bladder usually doen't signal strongly till around 300-400ml. If you are getting stronger urges earlier than this might be a sign of overactive bladder syndrome (OAB) that can coexist with retention. Unlike retention, OAB will not do any damage to your bladder but it can mean more trips to the toilet and less volume in your natural voids. So , if you want your bladder to hold more urine before you get a strong urge, then you should do bladder retraining which you can look up but basically it involves timed voiding (holding it in) and kegel exercises. There are also drugs but I would only try them last and for a good reason. If you do bladder retraining, just keep in mind that you don't want to go over 400ml very often. So the idea isn't how long you can hold it in (which can get you into trouble) but to change the void reflex from a lower bladder volume to a higher but acceptable (under 400ml) bladder volume.

The good news again is that you are regaining some feeling and that is the most important thing.

Jim

Yes, I'm very hopeful.  I get it... your descriptions of this problem and its various "ins & outs" (no pun intended) have been beyond valuable to me.  I wanted to do cic for awhile as I tried it while waiting for surgery in two weeks about a year ago.  I felt so good after doing it about 6 days that it began to dawn on me - maybe I can just do this indefinitely until I find out more about the Green Light.  So I started looking on the internet and somehow found Patient... and you.  I think your establishment know-how along with just a touch of healthy skepticism really reached me at the right time.  Thank you so much for being there and sharing. Yes, bladder rehab as opposed to bladder training... I get it.  Cool.  Hope.

The terms seem similar but are really two different things. Bladder rehab is a process of decompressing the bladder via CIC so it will stop stretching and start regaining strength and tone. Bladder retraining is retraining an overactive bladder to hold more urine before the feeling to void kicks in. Many women, for example, do bladder retraining for OAB, and of course they don't have an obstructive prostate!

It sounds like you have both under and overactive bladder, i.e. retention and getting the urge to void with low volumes. Again, not unusual.

My personal feeling is that undeactive bladder (retention) is the most important thing to address first since retention can potentially further deteriorate the bladder and effect the kidneys. OAB, on the other hand, while a PITA for lifestyle, really doesn't appear to hurt anything. For that reason I recommend you put your initial energies on bladder rehab via CIC and not really worry about the OAB aspect. Later on, sure, try OAB techniques such as bladder retraining/timed voiding, kegels, etc. Just make sure that your total volumes stay under 400ml, or your bladder retraining could undo all your benefits from bladder rehab.

You seem to be making progress already which is great. Be patient and don't expect everything to happen at once. My biggest breakthrough came after two years of CIC. Right now CIC is protecting both your bladder and kidneys as well as any surgery. You can relax and celebrate that fact!

Jim

Great advice JJ.  I'm being patient and still only using an average of about 4 catheters a day.  Always try to do an NV first.  I'm prepared for slow recovery.  Still just hoping to prove the docs wrong such as in your case.  

Keith,

As I mentioned to ChangeJobs, the first and most important of CIC is to empty the bladder completely, thereby protecting the bladder and kidneys as well as any surgery. For many, it can be terrific alternative to immediate surgery or even as permanent strategy. Bladder rehab is secondary and really not required for protection.

So when I started CIC, my goals were modest. I planned on a six week program to ready my bladder for TURP. Someone recently mentioned that good docs treat retention first with CIC or drugs prior to surgery and while there may be a handful that do, it would be just that. It's unusual for a doc to offer CIC as an alternative approach without patient prodding. So again, I was just following docs orders to CIC for six weeks to ready my bladder for surgery. But somewhere along the way I decided, Hey this seems to I'm going to skip/postone the surgery.

Again, no long term aims at this point, just using CIC as an alternative to TURP. As time went by, I started noticing more and more progress, and then started focusing on different bladder rehab techniques that I've outlined both here and in the "hard/easy" thread. None of these techniques really necessary to protect your bladder but were helpful to me in rehabbing the bladder. As far as protection goes, you really only have to remember a simple rule and that is to keep total bladder volumes below 400ml whenever possible and as a safety check have periodic bladder/kidney ultrasounds, say every six months or a year. This 400ml rule is also the cornestone of bladder rehab although there are things I did later that I believed furthered the process and those are in the "hard/easy" thread. I also think mental attitude is very important. Believing something may happen is often the first step to making it happen. I'm not talking false hopes or expectations, just a very simple principle that can work in life and I believe sometimes with your bladder. I think you have that attitude and it should stand you well. Of course no guarantees, but a long as you are choosing CIC anyway, to protect the bladder while postponing surgery, why not give rehab a good shot! That was always my attitude and I mentioned it a lot early on in this thead but some recent discussions make me realize I should mention it more often. Get into CIC for bladder and kidney protection which is an admirable result in and of itself.  Look at bladder rehab as a bonus, something to strive for, but something that is not guaranteed.

Jim

Jim

Exactly.  I'm with you.  My NVs are still pretty pitiful but if I ignore the urge - which goes almost completely away even if I get nothing out - and let it build up I can sometimes get out 50 or more.  What is the reason for the periodic ultrasounds of bladder & kidney?  If I'm completely emptying with cic what's the worry?

If you know that you're completely emptying your bladder than probably not necessary. But the only way you can know for sure is by bladder scan. So, yes, if you scan on a reasonable schedule probably no reason for the kidney bladder scan.

That said, I got to the point over a year ago where I was going days or even weeks without having to CIC. I can't remember if this was before or after I bought my own bladder scanner, but even if it was afer, my concern was that I might have been building up too much pressure in the bladder without CIC, so I opted for the bladder/kidney scan. I also had hydronephroresis years ago (dx by bladder kidney scan) before I started CIC, so it was in my mind. Fortunately the scan showed everything normal so my concern was needless but seemed prudent at the time, and still does.

Now that I have a home scanner and know that the pressure situation isn't causing issues, I doubt I will have another scan in the near future. Still, I think a bladder kindney scan for anyone with progressive bph isn't a terrible idea every year or every two years. It's totally non evasive and no radiation, so little downside.

Jim

Keith, with the risk of further antagonizing our sardine-eating, coude-loving friend, do you ever consider taking an alpha-blocker like Flomax, Doxazosin, etc. ? Just one pill a day, it might solve your problems, including  OAB and more natural voiding and less retention. You might also be able to cut down or eliminate your CIC. Hank

Hank,

There is nothing at all "antagonizing" in what you just said. I have used Flomax and Daily Cialis myself, the latter of which I preferred because of lack of sexual side effects. That said, I never used either with CIC except for short periods of time to experiment. And I'm all for experimentation. If someone has a better QOL combining CIC with alpha blockers, etc, then that is the way they should go. You appear to and that is great. In my case it didn't make much difference and I preferred to rid myself of the drug's side effects. Keith and others here are big boys and they will make their own decisions what works best for them. My only pick, and how this whole recent dialogue got started had nothing to do with combining, or not combining, alpha blockers with CIC. It was your statement that CIC somehow degraded the bladder's detrussor muscles and hopefully I have made the point in other posts that this is simply not true as long as you compensate by exercising the detrussors during CIC, if needed. So let's not make differences where they aren't.

Jim

I will also add that one effective use of Beta blockers, etc, might be in the "hard/easy" more advanced stage of CIC where you try and wean yourself off of CIC entirely. A little boost from an alpha blocker might help here. If I had been able to get off of CIC entirely with Daily Cialis, I *might* have, but in the end I couldn't. But I say "might* because later I developed painful leg cramps from Daily Cialis so I can't use it any more. As to the retro producing alpha blockers (all of them give me retro) I would prefer to cath a couple of times a day than have constant retro, but that's just me. Others might differ.

The more likely scenarios, however, aren't gettting off CIC entirely by using alpha blockers, but a you suggest perhaps having more volume in your natural voids and therefore being able to cut down the frequency of CIC. As I've said before, I agree that this may happen in many cases. But again it's a trade off to me. Would I rather CIC 3x/day on an alpha blocker versus 5x/day without. I wouldn't, but that's just me.

Jim

Whoops. That is alpha blockers, not beta blockers. 

Yes, I have considered it.  When I informed the Urology clinic that I wasn't going to go through with the Green Light laser tx they had scheduled (at least not at this time) they offered me drugs.  In fact I had a prescription for an alpha blocker waiting for me but I never picked it up because CIC is working.  I am using an herbal prostate formula that has an outside chance of shrinking the prostate somewhat.  You know of these herbs; nothing new or exotic.  I figure if saw pimento has been around for this long that it must do someone some good somewhere.  I wanted to try Ciallis but the cost is prohibitive to me.  Actually, I didn't mean to insinuate that I have a problem (other than the BPH).  Actually, things are going well as can be expected and I just wanted to remark on my progress.  

I assumed that if I use a catheter to drain my bladder until the flow stops that I was draining it completely or at least close to it.  I remember when you got the bladder scanner and it puzzled me a little at the time because I thought a small amount of residual urine either around the catheter or in the duodenum wouldn't cause pressure or hurt anything.  Just make it sooner that one has to cath again.  

I think you are right that because I haven't even been doing this for 1 year yet that I should concentrate on the bladder rehab part.  Yes, the frequent urges in between CIC makes me uncomfortable for a short time and if its persistent I cath.  I hate going to the doctor but I suppose I should make an appointment to check up with them.  The last time I went they didn't make any further appointments and seemed happy with my doing CIC if I'm willing to do that.  I imagine they're pretty busy.  

Placebo tests have shown that saw pimento does very little if anything at all for BPH. 

@Keith: I assumed that if I use a catheter to drain my bladder until the flow stops that I was draining it completely or at least close to it.  I remember when you got the bladder scanner and it puzzled me a little at the time because I thought a small amount of residual urine either around the catheter or in the duodenum wouldn't cause pressure or hurt anything.  Just make it sooner that one has to cath again.  

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Yes, that's true, if you use proper technique (for example withdrawing slowly at the end) you should get almost all the urine out of your bladder with the catheter. Refresh my memory, but not sure what you were puzzled about when I got my bladder scanner. Also not clear on what you mean by "Just make it sooner that one has to cath again."

Jim

Well, I just thought that it seemed like a bit of overkill to do CIC and then see if there is any at all left with a scanner.  Maybe puzzled is the wrong word.  It would give one reassurance.  I DO wonder sometimes if I'm getting everything out because if I push it back in sometimes I get a little more.  I usually draw it out slowly to make sure I'm getting what is right inside the bladder sphincter.  

I just meant that if one doesn't empty the bladder completely; say leaving 30cc by getting too hasty or withdrawing the catheter too soon, then it will be that much sooner before it fills up to say 400 again.  

 

@keith: Well, I just thought that it seemed like a bit of overkill to do CIC and then see if there is any at all left with a scanner.

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Ah. You are correct, you don't need a bladder scanner to check residual when you self cath because the residual is what comes out of the catheter. But I probably wasn't clear in my recent posts why I got the scanner. I got the scanner to check for post volume residual (PVR) when I was not doing CIC. There were times in the past when I went over two months without CIC and the scanner was to keep things honest, i.e. to make sure my PVR was acceptable.. Alternately, I could have made trips to the uro to get scanned, but I really wanted to test PVR when I wanted, and at different times of the day. In the beginning I used it quite a lot, but now that I know from the scanner that I can empty without CIC with acceptable PVRs, I only use it maybe every three months, if at that. For me, a valuable investment but probably not needed by too many, especially if you CIC on a regular basis. Another use of a home bladder scanner is for bladder retraining for OAB if you're not self cathing. It's a more precise than timed voiding because you will know exactly how much is in your bladder before you attempt to void.

Jim

 

Let me ammend that to say that even if you self cath, you could still use a home scanner for bladder retraining for overactive bladder (OAB) but I assume you could accomplish the same thing with timed voidings, just maybe not as precise.

Jim

A quick Google search for "bladder scanner" shows that they are a rather pricey item. 

Funny you mention that because a few minutes ago I was just watching some YouTube bladder portable bladder scanner reviews! A few years ago, only a few on the market, but more and more are arriving every day now, many that you can hook up to your smart phone.

Yes, many of the scanners are pricey, including the new 3D smartphone compatible units. You're probably talking 3K for a general purpose scanner and 6K or more for a bladder specific model such as the really nice Vitacon unit.

That said, you don't have to spend that kind of money unless money is no object which in that case I would go for one of those units.

For the rest of us, very serviceable and accurate second hand units can be purchased from between 1K-2K USD. I put mine together for less than $1,500 buying part of it from Jack, another from Jill and another from John. You could probably get a unit like mine for $1000 with some hunting on ebay.

My unit is a used real time 2-D ultrasound (Portascan Plus) now distributed by Laborie by previously from Mediwatch and by Bard in the UK. Portascan Plus actually gives you an ultrasonic picture just like the big machines at the hospital. I like the real time units for several reasons including I have a bladder diverticulum (pouch) that would challenge many of the automatic 3D machines for accuracy. I also like the fact that you actually see the bladder, very educational.

That said, most people will find a 3D automatic unit all they need and in fact that is what you will probably find at your urologists office. You don't see the bladder but a symbol of the bladder to line up the probe and then the software does the rest giving you an almost instant read of bladder volume. Point and play.

A very nice and reasonable 3D unit is the used and discontinued Verathon BVI3000. I've sedn refurbished units (calibrated with warranty) for $2,000 and units as low as $300 but something is usually missing such as the battery or probe and unless you do your homework, and want to buy a part from here and there, you could get stuck with something that doesn't work or needs expensive calibration.

There's also a bladder scanner thread which may have more information.

Jim

Steve,

If you get serious and see a scanner you like, you can PM me and I'll tell you what I think as I've shopped around quite a bit buying mine. Just keep in mind that unless money is not an object, you should have a specific reason for getting one, as you can get a free scan at your uro's office. In my case, I wanted "reality checks" , when I wanted them, at different times of the day, during period when I stopped self cathing to make sure I wasn't holding too much urine.

Jim

Jim

No, you were clear.  You always are.  I just didn't go back and read the older post.  Now I remember that you were scanning when you were doing the on/off strategy and wanted to see what you were retaining. It makes sense to me.  I'm glad that there isn't some caveat that goes with "catheters drain completely".  I'm still enjoying the relaxation that I experience following emptying completely.  I have my yearly medicare check up this week so perhaps I should have my GP check my blood levels for PSA and creatinine levels. Both of these spiked before I started doing CIC but were "going in the right direction" last time they were checked.  I went through hep c treatment with zepatier at that time so was getting some blood tests done to monitor that.

@Steve: Me and the MD family member agree with the urologist that I need to give the bladder more time to recover before surgery is even considered. Given that they took about 2000 ml of pee out of me when the Foley was put in we know that the bladder was badly stretched.

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Steve,

I might have missed it but what surgery are you considering? Your urologist is following a standard (but sometimes unfortunately skipped) protocol where a very stretched bladder is rehabbed via Foley and/or CIC for x weeks prior to a surgery. This is then followed up by urodynamic testing to give you a better idea if the surgery might work or not. Studies have shown this approach produces better results.

In fact, this is how I came about to do CIC. I was in near acute urinary retention having to assist the voids by pressing my palm against the bladder and literally pumping it out (crede* method). They drained 1.5 liters out of me and said I had to either do the Foley or CIC for six weeks prior to qualifying for TURP which is all the facility then offered. Long story short, I passed on the TURP and continued with CIC and looking back was happy with my decision for a number of reasons.

* One has to be very careful with the Crede Method as it can potentially cause high voiding pressures so discuss with your doctor first and if you do perform it, do it gently. A safer method is stimulated voiding where you can rhymically tap or even tickle the bladder often producing a response when normally you don't get it. I still using tapping today from time to time to get the flow started a little earlier. Some also get results from having water running during the process. There is also some talk on internet of putting your hand in cold water to stimulate the voiding reflex. Myth or fact I don't know but I tried it once and it seemed to work quite well but could be the placebo effect. In fact, it seemed to work a little too well and I forgot what happened but I haven't done it since.

Jim

Keith, Yes, hard to navigate this site with older posts. And that's why I try and repeat things, but hard to repeat everything,  knowing that the older posts may be buried.

How old are you? Some of the newer PSA guidelines are telling us that testing PSA after a certain age becomes counter productive but I can see why you might be curious given your history.

Jim

I'm 66 born in Dec. of 1951.  

You can google the latest guidelines by age but a lot has to do with your doctor, your personal views, and of course medical and PSA history. I'm over 70 and my PSA has always been under 1, so the guidelines suggest I never have to be tested again. That said, my former urologist wanted me tested, but again he's my former urologist.

Jim

Hello all.  I hate to change the subject but today is a day to remember are loved ones  And to wish you all a Happy Mother Day.  Because without Father's there would be no Mother's  We all must work together I think of my Mother most of my day's  My Mother had been gone for 32 years and I will never forget her.  I had a son born on the same day but life goes on.  I wish you all good health and gods blessing's.  Ken 

jimjames@I might have missed it but what surgery are you considering?

Right now, after looking at the surgery options, me and the family-member-MD are favoring Rezum.  That is why I am also on the Rezum forum.  Our main concern is that it is a new procedure with at this time only a 3 year post-op period of record so what happens let's say 5 years out.  Does the killed prostate tissue grow back?

I say that gives me 5 more years for the surgery technology to improve and given the growing number of men with BPH and their  concerns of the surgery side-effects, there is incentive for the medical industry to improve the surgery technology.  The family-member-MD who has been an otorhinolaryngologist for over 40 years gave me a great example on surgery technology improvements for treating sinus infections.

I hear you on "Your urologist is following a standard (but sometimes unfortunately skipped) protocol where a very stretched bladder is rehabbed via Foley and/or CIC for x weeks prior to a surgery."  The urologist that I am seeing does TURP's.  I plan to pass on TURP when the time comes and go with Rezum, if it does come to surgery.

The urologist says that the 2 liters that they took out when the Foley was put in indicates that bladder was so stretched out that we may need the full 6 months to see if the combination of CIC and flomax and finasteride works.  The urologist wants me to do the urodynamic tests about 2 or 3 months after he first saw me.  I will be contacting hm on this in about 2 or 3 weeks.

The family-member-MD has liked the cautious and conservative medical treatment that I have received since I changed my insurance to Kaiser.  He has been critical of some doctors that I have seen in the past.

The one complicating factor with Kaiser insurance is that I am locked into their doctors and the urologist that I am seeing does TURP.  There is a nearby urologist that was part of the Rezum clinical trials and the plan is that if I need surgery, to have a consultation with him next.  To maximize my insurance benefits, the plan is to get as much testing, etc. done with Kaiser.

I am not 65 yet and I have a high deductible with Kaiser.  Operating-room TURP is a lot more expensive then out-patient Rezum so doing a Rezum outside of Kaiser will probably still cost less.  Figuring out the logistics may be more complicated though.

I have gotten the same info on the Crede Method, running water, tapping, etc. from the family-member MD,  I do appreciate you mentioning this though.  He had me doing sitz baths for a while too.  I still cannot pee without CIC but I am getting several urges a day, which is good!

Thanks,

Steve 

@Steve: The urologist says that the 2 liters that they took out when the Foley was put in indicates that bladder was so stretched out that we may need the full 6 months to see if the combination of CIC and flomax and finasteride works. 

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You seem to be dealing with this methodically and intelligently. Now that CIC is protecting both bladder an kidneys the time clock has stopped and you can take all the time you want to make a decision.

Like yourself, my bladder was badly stretched. They drained 1.5 liters out of me. As to the above quote from your last post, early on in the process I asked my urologist how long my bladder could keep rehabbing. He said six months to a year with CIC and after that do not expect any more improvement. This is similar to what you are hearing because it's official line. Thing is it's based on nothing because no studies go out longer than that in fact most bladder rehab studies (pre-operative) are only for six to twelve weeks. Well, here's my story in a nutshell. Yes, I progressed the first six to twelve months but my big breakthough was at the 2 year mark. Not to say that this will be your result but it does say my uro, stating the company line was wrong. And btw I did this without drugs including finasteride.

I didn't take finesteride because of what I've read about it. You might do some research yourself and decide do you really need it? Look at it this way, you don't need it now because you're protecting yourself with CIC. You won't see fast results with NVs from Finesteride because it's slow acting. And if you end up doing Rezum or another prostate reducing procedure, Finesteride is a moot point because the surgery will do even better. So what is the reason for you take Finesteride now? I can't think of one.

As to alpha blockers or Daily 5mg Cialis, this is something you might try to see if it will help jump start your NVs. But I think the main thing is patience. You were on a Foley for a long time and it can take time to get things moving again.

The urges you are getting are good, but as I mentioned previously it could also be partly a pressure issue. While on one hand you don't want more than 400ml in your bladder too often, on the other hand it may be difficult to void if you're trying to void with let's say only 200ml in your bladder. So experiment a little with your cath frequency so that you will have 400 (even 500) ml in your bladder before you try your natural void. Mix it up and be patient.

Jim

What Jim is telling you is true.  Take your time relax and have patient.  Ken 

@jimjames: I didn't take finasteride because of what I've read about it. You might do some research yourself and decide do you really need it?

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Last week, the young woman that cuts my hair noticed new hair growing in the bald spot on the back of my head Other than that, I have not seen any of the other known side effects of finasteride.  I am seeing some of the standard flomax side effects though.  The worst are the blurry vision when I wake up which is counter productive for my overnight CIC, and the sleepiness which is just plain unproductive and bothers me the most.

The finasteride-flomax (or similar meds) combination for 6 months is a fairly standard practice and I understand why.  The urologist explained it to me in a too simplistic way of a heavy door that is stuck and the finasteride lightens the door and the flomax oils the hinges.

I  have been doing some Internet research on the finasteride-flomax (or similar meds) combination as has been the family-member-MD.  The classic CombAT Study is often sited but this study focused on men with mild to moderate BPH and not severe BPH with AUR which is where you and I were when 1500 and 2000 ml of pee was removed respectively.

So far, I have not found any studies on the effect of the finasteride-flomax (or similar meds) combination on men who already have severe BPH with AUR.  I am maintaining a file with links to what I have found with Internet research.  This is still a work-in-progress but I could post this or provide it in a PM.

If anyone on this forum knows some good studies on the effect of the finasteride-flomax (or similar meds) combination on men who already have severe BPH with AUR, then I would love to know about them.  In the meantime, I will continue my Internet research.

In about 2 months when I get my next hair cut, I can let you know how my bald spot is doing and if I am seeing anymore finasteride side effects

Steve 

@Steve: Last week, the young woman that cuts my hair noticed new hair growing in the bald spot on the back of my head [biggrin]

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Well, why didn't you say so before! This young lady may be more than enough reason to take Finesteride

But more seriously...

@Steve: The finasteride-flomax (or similar meds) combination for 6 months is a fairly standard practice and I understand why.  The urologist explained it to me in a too simplistic way of a heavy door that is stuck and the finasteride lightens the door and the flomax oils the hinges.

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Is the plan: (1) to have Rezum or similar if you pass urodynamics, or is the plan: (2) to wait x months on the finesteride-flomax combination to see if it works, and if so, then continue taking the combination perhaps for years instead of a procedure with or without CIC?

Jim

@jimjames: Is the plan: (1) to have Rezum or similar if you pass urodynamics, or is the plan: (2) to wait x months on the finesteride-flomax combination to see if it works,

Plans are always subject to change.  I am taking this one day at a time and it is an evolving situation.  At this time, I am leaning towards option 2 if it works and a reduction in the flomax as I am now on 8 mg/day and I do not like the sleepiness.  Following the family-member-MD's advice in the past has been to not have surgery if you can avoid it.  If I do need surgery, then avoid TURP and go with Rezum.  Certainly one of the themes on this and the Rezum forums is to not be rushed into surgery.

Damn, my overnight numbers were high at 475 ml but I had a really strong urge overnight and again this morning.  As you and the family-member-MD have suggested, flexing the detrusor muscle during CIC shows a change in flow intensity.  At this time, I do think that I am seeing positive results, but I still have to CIC to pee.

Steve 

JIM,Are there many men here that have had there bladder rehabbed from CIC  on this forum? Wow, maybe there is still hope for me, even though my urologist says it's doubtful that i will ever have a NV?

frank,

Frank,

It looks like I've had the most progress with CIC bladder rehab, but yes, a number of men have reported improvements. Your case is a little different in that you've been in full retention for some time in spite of CIC. The way I would look at CIC if in your shoes is as a relatively non invasive alternative to a prostate reduction surgery or procedure that will protect both your bladder and kidneys. I would not hold out much hope that CIC alone will allow you to natural voids. On the other hand, if you have a TURP or even Rezum, you might be able to have natural voids but you might equally end up having to self cath anyway. It's really your call whether you want to give one of these procedures a chance knowing it's probably 50-50 at best. If you want to take that chance, Rezum might be a good first choice but you have to find a Rezum specialist to evaluate you first. I know you've been to multiple urologists but if you want Rezum, you need a face to face with a Rezum doctor who has performed at least 100 of these procedures. We gave you an excellent name several times but he's about 3 hours away in Southern Illinois. Might be worth the trip at least for a consult of maybe you can find someone closer.

Jim

Steve sometimes you just have to realize it's time - my Urologist told me many people were so happy after they said they regretted waiting so long, and people I know even who have had a TURP or Green Light - two of the least desirable for most of us here - were very happy, one didn't care about retro, and the other did not have retro at all. Rezum should be even better or at least as good as anything else. Sure you don't want surgery if you can avoid it, but you're on a high dosage of a pill that makes you sleepy + finasteride is nasty. We can argue about that, still the longer you wait the more damage you're potentially doing to the bladder and you can't pee without CIC and that I can't understand because why take Flomax if you can't pee naturally?

My two cent's worth, I'm not your family member doctor but I've spoken to a lot of people who had prostate surgery and are very happy they did something.

Hi Jim, Thanks for that info.The uro Mcvary in southern il ,i had conversation with him way back.He made a comment on what do you expect you have a 80 year old bladder.There was no guarantee ,what to expect. Jersey doc says he has had success with 100 gram prostate. Too bad he's a long way away. I will keep looking for  a uro closer ,and hopefully when i ask how many Rezum procedures you have done ,i get an honest answer.

Thanks,

frank,

@mike588:  Steve sometimes you just have to realize it's time

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Mike,

It is definitely not time for surgery yet.  Last night, I  talked with the family-member-MD and the time is approaching for urodynamic tests which I will mention to the urologist in about 1 1/2 weeks as he suggested in April.  There is no reason to have surgery until we know that the bladder has recovered through CIC.  That I am getting urges to pee, suggests this but the urodynamic tests will or will not confirm this.

If the urodynamic test confirm that my bladder has sufficiently recovered, then I need to look into the surgical options.  My insurance is through Kaiser and the urologist I am seeing does TURP.  That means I need to get the necessary testing and imaging done through Kaiser before I get a second opinion from a urologist outside of Kaiser that does Rezum.

One of the urologist that did the Rezum clinical trials is nearby,  so the plan is to see him or another urologist at the same practice.  Once this is done, I will make my decision on surgery.  At this time, I am definitely leaning towards Rezum and not towards TURP.

While I don't care for the sleepy side effect of flomax and I question the higher dosage for the same reason as you, I have seen no nasty side effects with finasteride and my bald spot is going away   CIC is an inconvenience, but so far it is working for bladder recover.

When I talk with the family-member-MD, I get how MD's think.  He and the urologist are on the same page.  I am taking this one step at a time and one day at a time.  I know that this is going to be a slow process.  Hopefully, it will be over for my goal of ski season next year.

I have talked to one person who had the greenlight laser TURP and he was glad that he had it.

Steve 

Looks like you're on the right track good luck! I didn't mean rush into surgery obviously.

Did you see McVary or just speak to him on the phone? I understand he won't guarantee anything, but did he think you were a candidate for Rezum?

Jim

Can anyone tell me at what cc retention kidneys would be in danger?  Sorry-but I'm having a hard time talking to my dad's urologist.  He cuts me off like I'm asking stupid questions and I think they are good questions.  I am wondering if we can just get one of these scanners to see if he's really in danger in the first place.  He still has the catheter in.  I have to bring him back in a week and am trying to figure what to do next when it is removed.  Thanks for any advice.

Laura.  Sorry that your father is going through this but If this doctor is doing this to you.  I would take my father to another doctor that world care enough to answer your questions and concerns.  I do not know if anyone has talk to you about a Suprapubit Catheter.  It would be much easier on your father.  Good luck  Ken 

In terms of damage to the kidneys, it isn't a cc amount per say at any one time, but more about retention of a period of time. A bladder kidney ultrasound will show whether your dad has any kidney issues or not. It's a simple, non-evasive test your urologist can order if he hasn't already. The cc amount I talk about -- keeping the bladder under 400ml, isn't just about the kidneys, but keeping lower volumes also keeps the baldder from stretching. A portable  bladder scanner can help in that regard depending on what your dad's home program will be.

Jim

Jim, I spoke with him on the phone.He wasn't very pleasant. He said it would be up to me.He also said what do you expect ,you have an 80 year old bladder.I know a lot of 80year olds that are not having my problem.I didn't like his approach to this conversation.He also said he knew my other 2 urologist ,said they were very good. I see how they all stick together.Now ,i wondering, if having a foley catheter in for 1 month ,take it out to see if i have a NV? if not, they put the foley back in.This went on for 5  months, no NV. Now I'm the one who says i want do CIC.The Urologist never mentioned CIC.He wanted to keep doing tests?

frank,

I don't know what the ???? is wrong with these doctor's.  Stay away from him and his buddy's.  I don't know why no one whats to help you.  I don't care if you are 89 years old there should be something they can do to help.  Ken.  

Hi Ken,Thanks for your reply.I'm starting to wonder now if my retention was caused by having a foley bladder in and out for 5 months?f course I could not pee after each month so they put it back in.I wonder if this is the reason i have no complete voids?What would your Urologist say to this? Maybe i got a law suit?

Thanks Ken,

frank,