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

Thanks Frank. Were you able to insert the cath just by holding it at the funnel? Let me know if you need more help and I can send you a link where I went into the process in more detail.

I am not an expert on Urololift but the two things I don't like about it is having a foreign object in the urinary tract and the fact that I believe it will preclude you from having certain laser procedures later on. At least that is what has been reported here. I also have a large medium lobe although I believe they are now doing Urolift trials for those with large median lobes. That said, it seems to have the lowest chance of retro orgasm of any of the procedures so if I was a candidate (normal median lobe) I would seriously consider it if I needed to do something. However, at the moment I'm functioning pretty normal, haven't cathed in a couple of months, and have an IPSS score of around 5 (mild) so really no need for any operation or procedure. 

As you know I'm a big fan of self cathing instead of an operation or procedure but I realize that it's not for everyone nor do I think can everyone expect their bladder to rehabilitate as well as mine did. However, I'm sure my bladder is not that unique, so I do hope that those inclined will give self cathing a try for the longer term.

Jim

Hi JIm,Thanks again for this info. I would like to have that link on self cath.

I had a talk with the nurse at urology office. She said the urodynamics test will tell if it's my bladder or an enlarged prostate causing my acute retention.

Does this sound right to you?

Thanks,

Urodynamic testing is different from place to place. It's actually a collection of tests and not one particular test.  Can't hurt to run them but I found they don't duplicate real world events very. For instance they load the bladder with water much faster than in real life which can give false readings in ters of the point you feel the urge to urinate as well as retention. I've had urodyamics done and the docs still seem surprised why I have acute retention from time to time but otherwise am OK. They act as if this is an anamoly and yet I read here that others have the same issue. I also don't know whether the garden variety urodynamic test can actually differentiate bladder elasticity issues from prostate issues as retention, for example, might be a combination of the two. They also have something called video urodyamics which supposedly gives better information but I have never had it done. My advice is to ask for a prophalactive antibiotic at the time of, or just prior to treatment so you don't develop a UTI. 

Jim

Hi Jim,I'm amazed at your knowledge. You should write a book. I want to thank you again for this info.I can't understand why one urologist did a cystoscopy,no other tests and said he recommends Turp?Another urologist wants to do urodynamics,cystoscopy and a ultra sound of the prostate,before he recommends anything.Once again ,who would you believe?

Thanks ,Jim

Frank,

Both urodynamics and ultra sound are flawed in terms of retention in that they tend to overload fluids which can give a falsely elevated residual as opposed to real life. Cystoscopy has merits but won't necessarily tell you if you are retaining, and in fact my doc (quite "esteemed) recommended a TURP without doing a Cystoscopy. One thing good about the ultrasound is that it checks your kidneys for hydronephrosis (water in the kidneys). If you have hydronephrosis then you have to do something to empty your bladder more completely, be it self cathing or an operation.

As to which doctor to follow, the problem is that all these tests tend to end up with the same recommendation and that is to have the procedure or operation that the particular doctor does. It's not the norm  for a urologist to be trained in or do multiple procedures.

So my recommendation is that if the doc says you need to do procedure or operation "x", then see another doc who does one of the other procedures. The invasive procedures are TURP, Greenlight and Holep. The less invasive ones are PAE, Urololift and Rezum. Each has plusses and minuses  and their own risk/side effect profile and you may or may not qualify for all of them depending on the size of your prostate and whether or not you have a large media lobe. Unfortunately, you have to do your own research and running around here because you probably won't find a urologist that does more than one of the procedures and in fact PAE isn't even done by urologist but by interventional radiologists.

The other course is just to forgot all the procedures and continue to self cath. That's what I did. It's not for everyone but it will empty your bladder and protect your kidneys as well as any of the operations without the recovery process and side effects. 

Currently my IPSS (prostate sympton score) is "5" (mild) and that's just from self cathing, no operations. So my recommendation is to give self cathing a try for six months or so. If that doesn't work out then research the other operations and pick the one with the side effect profile you can live with. For rexample, retro ejaculation is a very big deal for some people and for some it isn't. You can plan on getting retro from turp, greenlight and Holep with much less of a chance from PAE and Rezum. I believe Urololift is the only one with no chance of retro but Urololift may not be good for certain sized prostates such as those with a large median lobe. Also, and not sure on this, I believe if you do Urololift then you cannot have a laser procdure in the future should the urololift not work out.

Jim 

Hi Jim,Thanks very much for this info.

Hi Jim, I have a question of concern?

When i self cath i  use a 1 liter container to go in,however i always see bubbles in the urine? Is this normal?

Thanks JIm,

Frank,

Probably just a function of the urine hitting the bottom of the container. I get that also. There can be other health reason for bubbles, or a foamy urine, but your uroloigst should pick that up during routine testing such as urinalysis.

Jim

HI Jim,The nurse at the URO office ,said if you have a foley catheter in and you want to do a urinalysis it will always show sign of an infection?Now ,how can i do a urinalysis ,I have retention,IF I  self cath,would'nt that also show a sign of an infection,the same as a foley catheter?

APPRECIATE YOUR ANSWER ON THIS JIM

THANKS

Hi Frank,

Your nurse is correct in most cases. Whether you are on a Foley, or if you self cath, most people will show positive for leucocytes and/or nitrities on a urinalysis. Many will also show positive for bacteria with a urine culture. In most cases this is called colonization, asymptomatic bacturia or an asymptomatic uti. This should not be a concern and it should not be treated with antibiotics. That said, if you are symptomatic, and depending on the severity of the symptons, it should be treated with antibiotics.

For that reason urinalysis strips can be a bit confusing. I use them more to rule out bacteria than to rule it in. BTW I wasn't suggesting that you go out and buy the urine strips, I was just recommending a particular brand if you were going to do it. 

Different doctors and facilities have different criteria which determines when a UTI is symptomatic versus asymptomatic/colonization. Your nurse seems somewhat sophisticated in that area so I would ask her at what sympton threshold do they treat with antibiotics, and what symptons do they just let go by without treating.

Jim

Hi JIm, Yes ,i would like the link to learn more on how to do sel cath. Lately i get a pelvis ,or testicle pain, and a numb feeling down the left leg. Did you ever experience this, after i self cath?I am seeing a new URO Dec13? 

thanks

frank

Hi Frank and Jim,

I also get a left testicle pain after I self cath. Is that normal?

Also Jim I notice that after I self cath I have the feeling to pee again even though my bladder is empty. It lasts for an hour or so. Do you get that too?

Thanks

Neil

Hi Frank,

Of course it's very difficult to diagnose over the internet, not to mention my lack of medical credentials, but my concern of the type of pain you describe would be to rule out epididymitis. If it were me, I would call your nurse who seems knowlegeable, explain the pain, and try and get to see the doc earlier. From reading, and from personal experience, epidymitis is not something you want to delay taking action on. When I had epidymitis, one testical was swollen and significantly bigger to the eye as well as very tender to the touch. It was all the time, not just when I self cathed so maybe you have something else but it still should be brought to your doc's attention sooner rather than later.

I think you will find the info on self cath earlier in the thread, where I talk about the "diver bomber" technique. Try to go to page "1" and read down. If you can't find it let me know and I'll look around.

Jim

Hi Jim, Thanks again for this info. I was checked for epidymitis,i'm ok there.

This testicle pain comes on and goes away,i did mention this to the URO

he didn't have much to say about this . I will bring this up with the new Uro i see on Dec 13,

Thanks Jim

Frank,

I'm glad you brought it up with them. Epidymitis is no joke and although not a common complication of self cathing, it does happen from time to time. Unfortunately, I know that from personal experience

Jim

Frank I talked with my urologist today when I saw him.  I told him that you are doing CIC.  He said he is very happy for you that you found something that can help you.  Take care  Ken

Hi Ken,Thanks for that info. I'm glad i'm doing something right.

stay well

frank,

You do  Ken

Hey Jim.  Yes they are doing urolift with the medien lobe they are pulling it to the side and it has been working.  With the uro-lift you don't feel anything.  I have 4 implants and I would not even know there there.  My doctor told me when I had them put in I can have them taken out anytime.  Has you know I did have a problem with them 9 month's into them.  Had to have one repaired.  What happen was my prostate got smaller and they had to fix all of them.  It has been over a year now and all is fine.  Even being catheter they have no problem doing it.  I do have a stricture so they have to use a 14fr coude catheter to get trough the stricture and to the bladder.  With you I would not do anything because you know how to do CIC and it workes for you.  Take care buddy  Ken

I saw a urologist six months ago who mentioned a trial on Urololift for people with large median lobes. He sounded hopeful. It is certainly one of few procedures I would consider if my situation deteriorated. But thankfully, everything works pretty normal for me now, and I only cath maybe once or twice a week, so I don't see any benefit now to rock the boat. 

One concern I would have is that I've read once you have Urolift that you are no longer able to have any type of laser treatment because while the stapes come out, something else remains. I'm unclear on that but maybe you could ask your doc. That wouldn't be a deal breaker but it would be a consideration.

Jim

No problem Jim  I will send him a e-mail and ask.  Ken

Good Morning Jim.  Can I ask you how long have you been doing CIC.  I know your doing good now but we have to be prepaired.  Just checking Ken

Hi Ken,

Don't have my date book handy but in terms of ball park...

Started CIC around 3 years ago at 6x/day for severe retention.

After around six months was able to reduce frequency but still symptomatic. Definite improvement in bladder tone but a long way to go.

Decided to increase frequency back to 6x/day as it was easier to self cath than to deal with frequency, etc.

At around the two year mark I was able to go off CIC for days at a time but occasionally had to cath because of acute retention. Signicant improvement in bladder tone.

Today, my bladder functions fairly normally and while I do "test" caths from time to time (to check PVR), I haven't  needed to cath for a couple of months now. My PVRs are consistently within acceptable range and often below 50ml. That said, not throwing my catheters away just yet because I may only be one "beer night" away from acute urinary retention Haven't tested that recently but am getting curious.

Happy with the way things are now so no plans for any operations or procedures. Should my situation change, I will of course consider the options availble at the time.

Jim

 

Thanks Jim for the imformation.  I see you are not one to rush into any procedure which is a good thing I wish more men would do more for them selves to work out there problem.  Not rush into the first procedure that there doctors are telling them to have. And with you doing good why rock the boat like you said.  I'm happy that there is a down slide to the turp procedure.  20% the last time I look at one of the new york hospital.  It may have been the gold standard back then but now we have more options.  I don't know if you ever look at the procedures that they say that will help BPH but 9 out of the ten have the worst side effects. All of them cause retro and other thing.  Alot of the doctor have this thing that lets fix this problem and if you have another problem will fix that.  To me I feel that is wrong.  If Im having something done why would I want other problems. Somemen can deal with retro and the leaking and other stuff.  I will never have anything done to me that will cause me more problems then the problem.  On this post over the last few years I have gotten alot of information on many procedures. And the newer one are going well.  I am also glad that there are a few doctor that came up with the new Turp call a plasma button turp.  If your going to have one this is the one that you should have.  The doctor have more control and it does not cause retro. They stay away for the bladder neck and the ejaculatory duct that is what men what not to have the prostate cored out of there body.  I feel sory for them.  But that is my opioion.  We do what is right for us.  Let me get back to the question.  I will send a email later to my doctor and see what he saids on the removeval of the implants.  Sorry it so long I just get carry away about some of the surgery  Take care  Ken     

Hi Ken,

My urologist offered me a Button Turp. When I asked what is the incidence of retro ejaculation, he said "100% if I do it correctly". Not very reassuring.

I have heard better numbers. Another urologist actually told me that he could do what might be termed (not his words) an "ejaculation preserving TURP" (or maybe it was Greenlight, can't remember)... "if I really wanted that". Now why would I not want that!!!

Unbelievable that the ejaculation preserving option was only presented when I gave him the reason I didn't want the operation.

I read here that often doctors either don't tell their TURP patients that will have retro or mislead them by telling them that they will be able to have  orgasms after a TURP. Literally it's true, dry orgasms, but I personally believe it's unconscionable for any doctor to not put a patient on a retro producing drug like Flomax for several weeks and let them experience themselves what retro really is.  Then let them make the decision for themselves if they are OK with the trade off. I would also like them at the same time to offer their patients the CIC option, but that doesn't fit in with their usual progression of watch n' wait, drugs, surgery. 

Jim

Yes he was not that reasuring.  It would take me a really long time to ever thing about that.  I have heard many good things for some of the men on here that have had them done and they do not have retro.  I think it's alot to do with the doctor If he care enough on what the patient wantst.  My doctor has never told me a turp was the answer.  He does not do them alot because of the side effects.  I think that is a good idea If a man is going to have a surgery that will cause retro he should be on a drug first to see if he can handle it.  I can tell you before I have my urolife done I was on flomax and rapaflo they gave me retro.  The first time I had it I was watching some porn to relax there was the builtup and then evenything went flat and nothing came out.  There was no feeling and it flet like I did nothing.  I don't think anyman should have to deal with that.  I do know all men are diffrent and some men have just a little change.  Doctor like to down play a orgasm and ejauclation and tell you all will be the same but it's not.  That is a text book answer.  I think also doctor forget that they are men and what there doing to another man.  Life is to short to give up anything.  CIC is another answer to not having surgery they should try that first but your doctor is not going to tell them that.  Ken

Hi Jim,I know you said you had sever retention. Did you have an enlarged prostate also?It's inspiring to hear you was able to rehabilitate your bladder . Did your enlarged prostate shrink also? Was this all due to CIC?

Jim i have this problem also. I still take avordart and flomax.it's not working.Did you go on a speical diet?

Thanks so much for this info JIm,

 

Hi Frank,

Yes, severe retention. PVR around 300 plus another 200 or so in my bladder diverticulum. During the period six months prior to CIC I could not urinate without pushing down hard on my bladder with my fingers. I really shouldn't have waited that long. Prostate around 90 grams then. 63 grams last year. Not sure if it got smaller or just variance due to the different ways it was measured. No special diet. Flomax didn't work very well. I never took Avodart and sort of glad I didn't based on some of the things I've read here.

Jim

May I have the link you mention?

It's a long thread so try this.  Click on the thread below. Then do a global search of thread (use control F on a windows machine) using the word "meatus". That should bring up the post. Let me know if it doesn't work and I'll figure a better way or just repost it. 

https://patient.info/forums/discuss/self-catherization-an-alternative-to-turp-greenlight-holep--336874?page=3#2428867

Hi JIm, I need your expertise on this question? If i cath 5 times daily , my PVP is from 1200 ml to 1600.ml.

If i cath 6times daily my PVP is 1500ml to 2000 ml.

I don't get it?  Could you explain this<

Thanks ,Jim

frank

 

Hi JIm, You are real blessing ,thank you so much.

I need your opinion once again? I know you were blessed to rehalbiltate your bladder,and you also had an enlarged prostate. Here is my question?

As of 7 months of retention,cannot pee without self cath,i have been doing CIC for 2 months now,do you think their is a possible chance that if i keep doing CIC even though i have an enlarged prostate,and a stretched bladder,i will be able to pee normal again?

Thanks again JIm,

 

Hi Frank,

Thanks for the nice words. 

As to your question, I really don't have a good answer. With time there may be some improvement in terms of natural voids, but how much improvement is hard to say. It is also possible that things will remain the same. But keep in mind, you've only been self cathing for 2 months. That is not a lot of time. So if you’re adapting to self cathing fairly well, I’d say see how things are going in another six months or so.  

Have you tried Tamusolin or even better, 5mg Daily Viagra recently? In general, neither is really necessary if you self cath, however it might be interesting to see if you can have some natural voids with either of the drugs. If so, then they may present some benefit in the rehab process. 

Jim

Hi Jim - just curious but I was wondering if you know of other guys who have been able to rehab their bladders like you using CIC? There are millions of us out there and it would be interesting to try and reach them for a general survey with this question. Maybe then the uros would take notice ... but then again probably not. Neil

Hi Jim

Like Frank I am  also wondering if I am making any progress to get to where I don't have to do this forever, even though CIC has gotten fairly routine. 

I have noticed about a fifty/fifty ratio between the PRV and the NV espically if the total void is less than five hundred mls. In other words if I have a NV of 250ml the PVR will also be 250 plus or minus ten.  With larger total voids of seven hundred fifty or so that I often get in the middle of night PRV might be three fifty and the NV four hundred. On the days when I time it for exactly six hours, sometimes I can't go at all the NV will be zero but the PVR will still be two hundred or so.

It seems my bladder wants to always keep at least two hundred mls of urine and won't ever naturlally void to less than that, which makes me think either the muscles in the bladder wall are partially shot already or the  nerves can't sense a voume less than that and from what I've read its unlikely complete natural voiding will ever come back.... 

No I don't. I have brought this up to at least three uros, but instead of getting something like "Hey, that's really interesting, tell me more, I'd like to study that", I didn't even get an inquisitive curiosity. They either didn't acknowlege it, took it as an anomaly or said, I was lucky. I also got the feeling they wanted to move on from that issue as it really doesn't fit in with their patient approach.

Jim

Guy's your not going to get a straight answer from most of the urologist because they do not concider CIC to be a cure all and they make no money on it.  I know my urologist has told me when I ask about Frank that if it work do it.  Because there are no guarantee on any surgerys  Take care  Ken

I've had the same experience with uros as well as researchers at some universities who at best say that CIC will just maintain bladder health but never improve it. Yet millions of men worldwide do this and I'll bet your experience is not unique.

So ... follow the money ... who loses if your method proves to be unive rsal to restore bladder function over time? Ans: the uros.

And, who benefits the most if you are proved right by the data that is already out there but just needs to be collected? Ans: Coloplast and other device makers.

So maybe the thing is to approach a Coloplast rep and suggest this to her and let them gather the global statistics to prove you right!!

This is what happens when I lie around with a fever relapse!

Neil

Neil,  unfortunately, you are probably correct. As with anyting else, if there's a threat to someone's income, the truth, is hidden, altered or ignored. Fortunately, there are forums, such as this, where it's up to us, as readers, where we have to opportunity to make up our own minds, as to what course of action to take.  Thank God,for technology...imagine a few years ago, we would have no other choice but to believe our doctors.

Hi JW,

Sounds normal and what I experienced along the way. Larger volumes require more detrussor energy, so with our limited detrussors those larger volumes translate into more residual. Sort of like a car running out of gas. 

Like yourself, I’ve also read, as well as heard from my first urologist, that complete natural voiding would never come back, and the reasons you outline would be why. But mine did. 

Right now I get the urge to urinate at bladder volume around 300ml which I’ve read is how a normal bladder should function. I then act on that urge either right away, or before a bladder volume of 450ml. My NVs are between 200 and 400 with 250-300ml most of the time. PVRs are mostly between 20 and 100ml.

This compared to three years ago when I started self cathing where my stretched bladder often didn’t create an urge to urinate at all, regardless of volume, or if it did at very high volumes.  My first week of CIC produced several cath volumes in the 1000ml range with either no NVs or some very low ones in the 50-100 range. (They drained close to 2 liters out of me just before I started to self cath. My NV was 450 but PVR 1500. Not good.)

This is not to say my bladder functions normally today in that it can handle the occasional larger volume let’s say after a couple of beers and some neglect getting to the bathroom. As recent as a couple of months ago, when my usual PVR was 20-100,  I would still go into acute retention when bladder volumes were say in the 450-500 range, although lately this hasn’t happened so maybe more progress, we shall see.  But fortunately, these higher bladder volumes are not an everyday occurence, and if it does happen, then I just cath, so no big deal.

The literature already tells us (and unfortunately our urologists often don’t) that an enlarged prostate, even one that is obstructing will not necessarily cause retention. It has to be combined with weak detrussors. So the question is how susceptible are weakend detrussors to rehab through CIC and is there a point where they cannot be brought back.

Another thought I had recently was the possibility that my on again/off again approach (more detailed in a previous post) to CIC might have accelerated healing in the same way that easy days/hard days do at the gym. But it took me almost a year to get to a place where my bladder could function well enough that I could go off CIC for days at a time.

Jim

 

Even back in the day, I never necessarily bought what they told me, and remember quite a number of trips to the library to look up what we can now "google" in a few minutes. But forums like this have definitely brought a new dimension to the equation where patients can share their experiences. Invaluable.

Jim

Jim

Great insight as always.I guess I just need to be patient....

As you can probably tell, I'm real good at that patience thingy....not 

In my case UR was discovered quite by accident, I wen't down for X-rays and came back with a couple of boxes of speedicaths. Therefore I can't say for sure how long I have been in retension but I suspect its been many years. So logically it makes sense that its going to take quite awhile to see any big changes in the volumes.Of course logic has rarely entered into my thought process regarding this,,

 

There was a recent paper titled: "The Detrusor Muscle: An Innocent Victim of Partial Bladder Outlet Obstruction (PBOO)". The paper traces the deterioration of the detrusor due to PBOO until surgical removal of the obstruction shows no improvment of bladder function. This paper, and others more recently are changing how LUTS is viewed from being just a bladder problem to intially being caused by outlet obstructions. This includes neurogenic bladders. The only exception is LUTS caused by poor arterial blood flow to the detrusor due to atherosclerosis.

Anyway, the research is showing that PBOO causes hypoxia in the bladder wall due to high pressure followed by reperfusion or returning blood flow when the pressure is relieved by say CIC. This cycle of oxygen starvation followed by oxygen resumption is called the I/R cycle (Ischaemia/reperusion). It causes hyperplasia in the bladder lining itself and hypertrophy in the detrusor leading to bladder wall thickening and holes in the lining which can cause interstitial cystitis.

The problem with I/R due to highpressure/normal pressure is that it causes free radical production which destroys the energy source in the smooth muscle cells of the detrusor.

BUT all this can be reversed over time by maintaining normal bladder pressures like jim did with frequent CIC. This is because stem cells in the bladder can form healthy new tissue if the I/R cycle is broken. Also we need to take strong anti-oxidants like coenzyme q10 because the bladder wall's own antioxidants are destroyed ib the I/R cycle.

There is a real physiological basiss for jimjames results and we all can achieve if we can let our bladders rest by keeping the pvrs low - I hope I can and we all can. Neil

 

Thanks. I will take a look at the paper. 

My understanding is that BOO is often the culprit and the detrussors the victim but it is a slow process meaning you can be asymptomtic for some time until the bladder function starts to fail. Where CIC fits in is to reverse the detrussor deterioration so it can once again push through the obstruction.

However, there are also studies that suggest things are a bit more complicated and that BOO isn't necessarily the main player.

Here is the abstract from a a 2005 study titled: Pressure Flow Urodynamic Studies: The Gold Standard for Diagnosing Bladder Outlet Obstruction

"For years it was assumed that lower urinary tract symptoms (LUTS) in men were caused by obstruction by an “enlarged prostate.” The terms benign prostatic hyperplasia (BPH) and prostatic obstruction were used interchangeably. Over the past 2 decades, we have developed both a better understanding of bladder and prostate function and its relationship to symptoms and new terminology.1,2 Although symptoms usually cause patients to seek treatment, several studies have shown that there is no correlation between symptoms and the presence of obstruction.3–6 Therefore although a diagnosis of obstruction is important, as in cases of failed empiric treatment or before surgical intervention, further diagnostic testing is necessary."

And this from a 1979 study titled: The assessment of prostatic obstruction from urodynamic measurements and from residual urine.

"One hundred and seventeen males over the age of 55 were investigated for possible prostatic obstruction. About half of the cases in this series could have been objectively classified as unobstructed or obstructed from the maximum flow rate alone. In about two-thirds of the cases obstruction could be satisfactorily assessed from the maximum flow rate together with the detrusor pressure at maximum flow. It was not helpful to combine these 2 measurements into a single urethral resistance factor. In the remaining one-third of the cases, obstruction could be objectively assessed only from a plot of detrusor pressure against flow rate throughout micturition. In many of these cases both the pressure and the flow rate were low and the main peculiarity was that the contractile power of the bladder was weak. Residual urine is a sign of an abnormality of bladder function rather than the direct result of urethral obstruction.

I think the paper you present is closer to how I looked at the problem. Makes sense. But if you read the other papers it's clear that this is a complex issue with often no clear cut diagnosis even with urodynamics and certainly not with the type of cookie cutter urodynamic study most of us get which is often supervised by a nurse. But I think all the papers agree that it's "not the prostate stupid" it's the bladder, even if the prostate turns out to start the problem. But what about cases where the prostate doesn't start the problem, ie BOO but no BPH and no PVR? How did those systems adapt positively to an obstruction while others like mine did not? I would think there are a number of factors involved. One that comes to mind is many years of not immediately heeding nature's every more frequent call due to logistics or activity. Today when I feel the urge to go, I try as best I can to go right away. 

Jim

Jim

Hi Neil,Thanks for this info . The detrusor muscle, makes me think perhaps this is my problem. I cannot  pee unless i do CIC.When you say the bladder rests by keeping the pvr low,I don't know what you mean by keeping the pvr low[post void residual } ?I have to cath most days about 5 times a day,sometimes 6. I get the urge to pee usaually after i cath around 3 hours . I then try to hold off for 5 hours.Idon't know if this is a good thing or not?The uro office said its to hard on the urethra to cath 6 times a day? I dont know .I will ask JIm this question also?Do you hold off when you get the urge to pee also?

i hold off for 5 hours if i can,maybe this is not the right thing to do?

frank,

Hi Neil,

This is really interesting, especially the part about interstitial cystitis. I have had BPH for a number of years. Several years ago, I began to have burning in addition to the difficulty in urinating. I have had a number of urinalyses, plus several urine cultures, all of which came back negative. I had a course of antibiotics, which didn't help. Sometimes the pain is extreme. After doing some research on my symptoms , I came up with the idea of interstitial cystitis, but the docs said "no, that's very rare". I don't know what kind of treatment there is anyway. One integrative medicine doc recommended uva ursi, but I haven't tried it. I have tried all kinds of herbs and supplements though. In August, courtesy of too much stress and a couple of cross-country flights, I went into retention and had to go to the ER and wear a Foley bag for a week. When I got that out, they put me on Rapaflo (I'm off it now) and CIC. I'm currently doing CIC 3-4 times daily and it feels so great to be able to empty my bladder completely and only get up once at night (CIC at 2am or so every night). The idea of CQ10 sounds interesting; do you have personal experience with that? I'm currently taking saw palmetto and pygeum but need to add something else. I'm not really inclined to have surgery except as a last resort and don't like pharmaceuticals. Thanks in advance for your thoughts.

Best wishes,

 

Hi Frank, Your Uro is wrong. It's OK to cath 6x/day. I've done it many days. No need to hold off for 5 hours. If you get the urge to cath after 3 hours, just do it. It should be better for your bladder.  Also keep a log so you can track your new volumes.

Jim

HI JIm, Do you think,this is the right thing to do? I can only pee when i do cic/ I get the urge to pee almost every 3 hours ,however i try to hold of cic for about 5 hours. ,sometimes 6hours. The nurse at the uro office said its to hard on the urethra to cath 6 times a day.My concern is just holding off for 5 or 6 hours bedore i do cic? Is this a good thing?

Thanks for this info JM

Frank, Cathing 6x/day is pretty standard. It's not just my opinion but that of many doctors. If it were me, I would cath when I feel the urge up to 6x/day. Keep a void log and see how it goes. You can always go back to 5x/day but I think you will feel better with 6. I don't like the idea you are holding off for 5 to 6 hours. It probably isn't good for your bladder. 

Jim

Hi Jim and Frank,

Jim - the papers you mention were resolved in a recent one that I will get for you tomorrow. Basically the researchers found that when there was no BOO at all and yet the men still had retention then it was a sign of systemic atherosclerosis throughout their body - that is: the blood flow to the detrusor was reduced which lead to hypoxia in the bladder wall because of clogged arteries delivering blood the bladder wall and NOT because of high bladder pressure due to retention which forced blood out of the capillaries in the bladder wall tissues. But the effect is the same since I/R will make the bladder lining porous and stiffen the detrusor muscle leading to inadequate voiding and high PVRs. In fact nowadays when men come in with high PVRs and LUTs systems and yet show no signs of BOO due to BPH or other obstructions then this is taken as a sign that these men are suffering from hardening of the arteries throughout their bodies and should be treated for that. I will get you the reference title tomorrow.

Frank - your question is best answered by Jim as he lived the whole experience. I just had the most awful catheter experience again. I could barely get through my prostate - it took about 6 minutes and then I had to wait at the sphincter for 8 more minutes with gentle pressure to get in. When I finally did there were 3 large blood clots that first came out and then about 250ml pee. But now  after being finished for an hour I still fresh blood dripping out the penis! I wish this were only theoretical for me - I try to distract myself with th research from my real world problems.

Good luck to you. Neil

Hi Neil,

Look forward to reading the paper.

Very sorry you’re still having all these problems with CIC. I wish I had something in my experience bank to help you with, but never had major issues getting through the sphincters. Maybe Stebrunner will chime in as I believe he had problems getting through the sphincters in the beginning.

My concern is that what you’re doing right now may be counter productive and cause damage. Ideally, you would have a CIC supportive doctor who would look inside and see if something is causing the problems, be it an infection, stricture, false passage, whatever. Muscle relaxants and trying a non-coude have been suggested as well.

If it were me, at this point I’d seriously consider having a temporary Suprapubic done. It will give your urethra a complete rest and time to heal. It will also protect your bladder and kidneys just like CIC. It’s also far superior and more comfortable than a Foley because no tubes in the urethra. And if you get one with a “Flip Flo” valve there is no bag to carry around and empty. I seriously considered a suprapubic myself when I had problems the first month or so, and my issues were not as bad as yours. Just don’t want to see you suffer or do any damage. I realize you may think this is a step backwards, but sometimes you have to step back to go forward.

Jim

Hi Niel

The papers you mentioned are  very interesting. I've been diagnosid with both micro and macro vascular disease and although the prostate has been a litle enlarged it never seemed particulary big compared to those having symptoms..

I know you have expressed a real adversion to the Doc's but it seems to me after this long you really need to see somebody. They can put a camera up there and see what is going on,,

Did you ever try watermelon seed tea?  A guy on another forum said that it worked wonders for him.  He tried just about all the different kinds of remedies, but finally the watermelon tea, worked for him.  If he stops drinking the tea, his symptoms eventually returns.  I tried it for a few weeks, and in my case it was inconclusive.  I still have the watermelon seeds, and so I might try it again.  I guess, I'm kind of lazy, because the CIC, is working just fine for me.  As I've stated previously, an empty bladder, feels great!

Thanks for that post.  Gives us all hope with our problem!

 

Thanks, Dennis! Never heard of it, but it sure couldn't hurt to try.

 

I tried watermelon seeds. Nothing changed...

Hi, Neil,

I discovered early on that CIC isn't for the faint hearted! It took me quite some time to get the knack of it--as many of my early posts show. And at present I still struggle at getting past the external sphincter. The bladder sphincter is easy for me now. Don't know if you already do this or have tried this. But once I'm past the external sphincter, I move my penis so that it's at 90 degrees from my body (straight out).

At that point I have my finger over the end of the funnel and slowly push in the catheter. If I have resistance at the bladder sphincter, I keep slight pressure, which I'm sure you do as well. Once I'm in the bladder I know because I can feel the pressure on my finger covering the funnel. Then I point my penis down toward the toilet bowl and pull my finger off the funnel. It sounds like you're using many of the relaxation techniques, and that's good. I found some work one time, and others might work the next. The most important technique for me is relaxed breathing. I often catch myself holding my breath, and when I'm doing that nothing relaxes!

After my PAE I had a nasty UTI, making CIC almost impossible. My IR had a Foley put in for 7 days to give my urethra a rest as it was pretty raw. I felt like it was a step backward, but I'm glad I did it. You may want to consider a Foley or a suprapubic catheter, as Jimjames suggests. Or try another brand or style of catheter. Once you get past this rocky spot, you can always go back to the catheter you like.

Thanks for the research you've been doing! I'm finding a lot of encouragement and hope there.

Stebrunner

 

Stebrunner,

Neil has mentioned that using some external lube with his Speedicath helped get by the external sphincter. Something you may want to experiment with. When I started with red rubber catheters, external lube was required. One lube that was very slippery is "Surgilube". Think you can get it on Amazon.

I do remember your problems well in the beginning! I really admired you fortitude, and not sure I could have put up with your insertion difficulties as well.  Hopefully it gives Neil hope that a rough beginning can be overcome. That said, sometimes you need to step back as you did to give it a rest, evaluate things, and heal up. You really don't want to damage anything.

I suggested a suprapubic because it completly bypasses the urethra (tube through lower abdomen into bladder) for a total rest. Studies also show less incidence of UTIs with suprapubic than Foley. However, a suprapubic I believe is an in patient hospital procedure so the average uro may balk and just suggest the Foley. But if it were me, I'd go Suprapubic for reasons mentioned, obviously only with someone who has experience in performing them.

Jim

 

Thanks Jim for your help. I will see a nurse practicioner in a few hours to at lease get a pee test. Tough night and day. I will consider what you suggest.

Just wanted to give you the papers. Of course there are also neurologic causes of bladder dysfunction. They can be the original cause or develop later secondary to PBOO. I recall 3 layers for the bladder wall: the outer epithelial layer keeps out the toxins from the bladder wall but I/R and oxidative stress can make it porous so that IC results (common to all epithelial linings of organs); next is the middle lamina propria layer which is where most of the nerve signaling is done and this can be ruined by free radicals and OS. And then the detrusor muscle where the smooth muscle cells can have their energy sources in their mitochondria ruined by hypoxia resulting in loss of contraction ability followed by fibrosis and cell hypertrophy. All 3 layers are subject to inflammation and and cell proliferation leading to auo-immune over time. Your method can stop this along with string antioxidants like coenzyme q10 to break the cycle. Neil

Wow - forgot the papers:

"Chronic bladder ischemia and oxidative stress: New pharmacotherapeutic targets for lower urinary tract symptoms", Nomiya et al, 2014.

"Oxidative stress in Benign Prostatic Hyperplasia: A Systematic Review", Minciullo et al 2015.

"Ischemia, Hypoxia and Oxidative Stress in Bladder Outlet Obstruction and Bladder Overdistention Injury", Lin et al 2012.

I can send these to you if you cannot find them. Thanks for your help. Neil

Hi Jim ,Did you have enlarged prostate ,and obstructing lateral lobes,also when you were in severe retention.Knowing this perhaps can help me ,as this is my problem?

thanks my friend JIm,

Thanks Neil. Will take a look. As to q10, haven't taken it since I started cathing, not that it would hurt.

Studies aside, the body has a great propensity to heal itself. Doctors and physical therapists can sometimes get in the way. On one level what self cathing does is it allows the body to heal itself by resting the muscles and tissues that have been stressed and compromised for years. By combining CIC with let's call it CIS (clean intermittent stress) results can occur that most western physicians fail to comprehend. 

Good luck with the nurse, but think about what YOU want. And please get checked out for any internal damage you may be causing. And as long as your reading and researching, read up about suprapubic catherization if you haven't already, as well as the "Flip-Flo" valve. If your doc thinks it's overkill and suggests a Foley instead, it probably just means he's not comfortable doing the procedure, or maybe just doesn't do it for a variety of reasons including time and insurance compensation. In that case, find someone who is experienced and will do it. You're just having too much difficulty as is, so you have to change something. If for some reason you want to keep trying, at least give the smooth muscle relaxants a try like 5mg Daily Cialis or Flomax. 

Jim

Neil, i so sorry for this problem your having.Jim should have an answer for 

you,if not have you tryed a different URO? Maybe this could be an answerz.

Have you had surgery for your prostate problem? I would consult with a new URO.

Good luck Neil. i hope you find an answer.

frank

Hi Light1 - sorry for the delay in writing back. I have symptoms similar to yours. I've been doing a lot of reading to try and understand how jimjames healed himself when all the uros said it wasn't possible.

It seems when the linings of our organs (and blood vessels) are starved for oxygen the cells that form a tight barrier to whatever the organ contains start to loosen up and leak. This is true when we have BPH since we increase the bladder pressure by pushing and high PVRs which forces blood out of the bladder wall.

So when these barriers leak the toxic chemicals that get into the lining cause inflammation and if left alone becomes chronic and can destroy the linings.

One way to fight this for the bladder is to avoid spicy foods, acidic drinks and so on but you know that. The other is to give the lining a chance to heal itself which is what I think CIC does for us. The lining can regenerate and seal again given the chance when the aggravating factors are removed (including aggravation!).

But a key culprit of hypoxia (followed by reperfusion of blood when the pressure is released) is the production of free radicals that destroy the tissue. So we need to use high dosage of anti-oxidants to help destroy these free radicals and restore balance in the lining cells. I started recently on coenzyme q10 because there is a lot of good clinical data supporting its function this way and it is easily available. So I take 200gm capsules 3 times  a day.

I cannot say it has done anything yet but it is for the longterm with CIC to rehab my bladder and avoid surgery. Also there is research showing that oxidative stress may be behind BPH. This makes sense since the bPH develops in the epithelial tissue of the prostate. So maybe the coenzyme q10 will help reduce my BPH too. At least CIC gives us the time to explore this option.

Take care

Neil

Thanks frank for your kind thoughts. I have changed uros 3 times now but they all just offer me their own surgical option.

I did have PAE perfomed in August at UNC. I was told I was an ideal candidate for it due to my large prostate (280gm) and no meduan lobe or obstructions. So I paid the money and had it done but have not seen any improvement in my symptoms. If I can get CIC to work for me I will stay away from the doctors and enjoy life - I sure hope so.

Good luck to you and thanks.

Neil

Thanks Jim and Stebrunner,

My experience today was better than I had expected. The nurse practitioner was new and did a much more thorough exam of me than my doctor ever did.

She first took a pee sample and confirmed there was no blood or nitrites in it and only a small amount of leu which surprised me. The C&S results will be available in 2 days. She said the Macrobid wa sok but she did not suspect a UTI.

But then she gave me a referral to the local "continence" nurse who should be able to help with CIC issues. She also referred me to a new physio therapy place in town that teaches pelvic muscle relaxation. She said these muscles were as a tight as a drum and I explained it was because I feel I always have to pee and am holding it in.

So that was a good visit. I am amazed there was no blood at all after the bleeding again last night.

Do you think the extra lube is causing me problems getting in the door? I cannot imagine that but I can try tonight w/o any lube but the pain then at the prostate is really bad.

I forgot to mention that a few nights ago the catheter got stuck while inserting it through the prostate. I pulled it out gently ok but that was the first time that happened. Maybe it was too much lube?

I am just going to keep trying gently. I will try the straight one tonight.

These large stringy clots that come out at first fluid from the cath: could it be blood that was fresh from the previous catheter which then coagulated behind the sphincter at the base of the trigone region?

Thanks for all your ideas guys. I know how much you want to help me so maybe the best way I can say thanks is to get back up and running, as if my life depends on it which it does in fact.

I just cannot do the suprapubic or Foley options but thanks for the education. I WILL make CIC work again and start the rehabing.

Take care

Neil

 

 Extrodinary no UTI with all that trauma. I was getting symptomatic just reading your posts

The new nurse seems on the right track and the pelvic muscle tightness does not surprise me. I talked about relaxation strategies recently here, specifically using guided scanning/relaxation exercises  from the Savansa yoga pose. A little smooth muscle relaxant like tamusolin, daily Cialis or Valium might help in addition but I'm getting the idea you're too much of a stoic for that pharm stuff!

Just be careful with the straight catheter. If it goes, fine, but unlike the Coude, there is no "safety" hook at the end. It's like a spear. So if you push hard enough it will penetrate. CAREFULL!

Lube or no lube. Try both and go with what works best.

Jim

Hi, Neil,

Wow--your new nurse practioner sounds like a "keeper"! It sounds like she knows how to help. Finding a physical therapist to help relax your pelvic muscles is a great idea. I may try to find one myself! Been using some of Jimjames's relaxation techiques and some others I've learned online, and they've been helping me relax my external sphincter. Had a rocky first CIC today, but then the following 4 have gone very well. For grins, I even timed one at 1 minute-10 seconds...a new personal best time for me!

What did the nurse practioner say about your fever?

Stebrunner

Sounds like you had a caring nurse...lucky guy!  Yes, I had to have a Foley in for 3 months, and I felt a little anxiety and depression, at times. I remember thinking to myself, what if I have to wear this thing the rest of my life, what a depressing thought  Like Jim says, there's a good chance it will get better, as more time passes.  The bladder, just needs to regain its tone.  Many prayers heading your way!!!

Thanks guys for all your good wishes. I guess time carries us from roles where we help each other to roles where we need help from one another.

I'll know the C&S results tomorrow but the nurse thinks I may have had the flu or just stress fevers which are common to me.

I have an appontment now with an East Indian physical therapist who specializes in muscle relaxation including the pelvic zone - wouldn't have guessed he would be way up here. My problem is Iive in a very stressful household so there isn't much opportunity to do Yoga or other methods.

It takes so long to get through - last night I sent 4 minutes just at the prostate and then another 6 minutes at the internal sphincter. All for only 250ml. So I'm thinking I will just get up when the need calls at 2am or so when it is quiet and I am relaxed and then CIC - I'll bet then my volumes are very high and after that maybe I could sleep to 6.

Steb - in what way was your first CIC rocky?

Thanks again everyone.

Neil

Hi, Neil,

For some reason my first CIC of the day is usually the toughest for getting past the external sphincter. Yesterday was even more so. I started off with a great NV of 150. Then I started to take the catheter out of the package and suddenly had to void again--this one was 60 ml. I very rarely double void. I started to CIC and got to my big ol' prostate where the "battle" began. I tried coughing, tried gently twisting back and forth, and tried constant pressure. Several minutes into this I suddenly had a strong urge to void again, so I pulled the catheter out and voided another 140 ml, making it a triple void event! I started my CIC over and again had resistence at the prostate. This time I focused on my breathing and got through.

The relaxation techniques I've been learning have been helpful in loosening up my pelvic floor, and the techniques include breathing. I'm learning to breath using my belly--not my chest. When I exhale, I visualize myself pushing my diaphram down to my pelvic floor. It seems to help me a lot. Last night before bed, I laid on my back on the floor and spent 5 minutes or so just focusing on my breathing. And I plan to do more of that at various times throughout the day.

Today passing the external sphincter has been much easier. Since 4 a.m. I've had 6 NVs of 150 ml today--incredible! And I set a new record for myself this morning with a NV of 200 ml--wow! Last January I could only NV a couple of drops, so I'm amazed! Who would've thought taking a pee could be so exciting! LOL!

Stebrunner

Hi stebrunner - thanks for sharing that - we have very similar experiences - I often have to NV during cathing too. I think a big part of my problem with entry is the tension I carry in my pelvic region. I now have an appointment scheduled with a therapist on this who can show me directly the way to relax. I wonder if they use biofeedback where they put some electrodes on the pelvic floor that display tension?

That would really help as I don't understand this region very well. I know guys have used biofeedback to perfect the Kegel exercises for strengthening their external sphincters to avoid incontinence.

That is great about your NVs - something has kicked in - maybe your rehabed detrusor! I hoep so. Take care. Neil

Neil, I'm starting the watermelon seed tea again. started yesterday and will continue till I finish the 5 pound bad of seeds...hopefully.  I'll keep you posted on any improvements or other-wise.

Thanks Dennis - I hope it works better for you than it did for me. Happy holidays! Neil

Stebrunner,  I don't know if this would help, but after all the urine has drained from my bladder, what I've been doing is while the catheter is still in the bladder, I twist it side  to side.  With my thumb, and index finger, I roll the catheter, back and forth, continuously for 100 times. I used to do it for 20 times, but since a few days ago, I roll it back and forth, for 100 times.  My thinking is that the body, will adjust to the passage-way that the catheter, is creating, by going back and forth, much like a rotor-rooter.  I notice that I can get the catheter in pretty effortlessly, into the bladder.  I've done it in 7 seconds so far as my fastest time.  It feels like the passage-way, being reamed out, and providing less resistance, because of the twisting, going back and forth with the catheter.  I cic, three times a day. So that would be 300 times, that the catheter, is reaming out the passage-way, on a daily basis.  I believe that the catheter, is creating a nice little hole, that the body, is adjusting to.

Hi Neil,

Thanks for your note. Your analysis is interesting and makes sense. I'm currently taking Saw Palmetto and recently added Pygeum. I intend to try CQ10 as well. My understanding is that the Ubiquinol form is the most active. I'm looking for a vegan formula because I'm not interested in ingesting the ingredients of standard gelatin capsules. I was taking an alpha blocker trade name Rapaflo for 3 or 4 months. It did not help that much and had nasty side effects, so stopped. Have been on a vegan, macrobiotic diet for the last 9 years, since I had a diagnosis of PC back in July of 2007. Have been monitoring it pretty closely with color doppler ultrasound as well as PSA and PCA 3 tests. The BPH is actually giving me a lot more trouble. Doing CIC 3-4 times per day right now and hoping to be able to reduce my symptoms with the combination of CIC and supplements.

Best wishes to you for the Holidays and New Year,

 

Hello Light1 - thanks for the kind wishes and I wish you and your family best wishes for Holidays and a happy healthy 2017.

I would like to recommend another alpha blocker to you as I also had bad side effects from all the usual suspects. I've been on alfuzosin now for 13 years (also called xatral; uroxatral ). with no side effects at all and really good benefits in terms of muscle relaxation. So give it a try.

\You are correct about the Ubiquinol form - that is where most of the research was done. I take soft gels and 200mg 3 times a day. My hope is that the free radicals generated in bladder (and elsewhere) from oxidative strss will be neutralized by this supplement since oxidative stress destroys the cell's natural anti-oxidant action.

I am sorry to hear about your PCa. I am scheduled for a biopsy using a targeted MRI procedure for a lesion seen on the periphery of my prostate. I should add the anti-oxidants like Ubiquinol are also used to fight PCa since cancer cells proliferate through oxidative stress.

All the best.

Neil