HealingWell
Search Close Search
☰

Questions concerning incontinence

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/18/2011 1:47 PM (GMT 0)

I have been dealing with incontinence issues since surgery in 7/2010 in spite of doing Kegels one month prior to surgery, going to a physical therapist 3 months post surgery to assist me in doing Kegel exercises as well as suggesting ancillary exercises, being referred to an incontinence specialist who has had me on Vesciare for the past four months and Imipramine (starting with a 10mg per day does, increasing to 25mg/day and now at 50mg/day for the last two months). There has been some improvement, but it is hard to assess improvement since so much depends on activity level. I am pretty much continent while seated or lying down, but have real issues when standing or moving and my observation is that it is not spurts of urine while standing/moving...it is a contstant drip. If I really concentrate on keeping pelvic muscles slightly contracted, I leak very little, but if I am talking to someone, intent on finding things in a store, etc., I lose my focus and do not maintain the slight contraction. That is the background...now the questions:

1. I have read that the inner sphincter near/at the bladder neck is always damaged to some extent during surgery. Does this sphincter actually contribute to urinary continence? Sources I have read state the function of this sphincter is to prevent ejaculate from entering the bladder and is completely involuntary.

2. Is the purpose of Kegels to train you to keep a slight contraction so it becomes almost "involuntary" or to bulk the pelvic muscles so that the external sphincter remains closed when muscles are relaxed?

3. I have a fairly strong stream after surgery...something I have never had before. I asked the surgeon about this on my first visit after surgery and he couldn't explain it other than looking over his notes and stating that no strictures were noted in the urethra. I know stream generally decreases as one ages, but even as a teenager, I did not have this strong stream that I have now. Any conjectures on why this occurred?

4. I am scheduled to have Urodynamics testing next week and, based on the results, some intervention possibilities will be discussed. Is now the time to consider bulking agents, slings, AUS or should I wait for further improvement? I started wiht leaking 20-30+ ounces of urine each day. Now total leakage per day is in the single digits often in the 2-4 ounce range. I am now nine months post RRP.

Also, I should mention that the robotic surgery was performed by a very respected surgeon in the area. He is the only surgeon at the hospital that does RRP and has done a large number of them and the hospital is a teaching center for da Vinci RRP.

Posted 4/19/2011 1:44 AM (GMT 0)
Rainman

It took me 8 months to get it licked, but I consider myself 99 % continent now. You will find several schools of thought on this topic, so being a non scientist, I will defer to the experts. It is my understand that the length of the urethra coming from the bladder is a key indicator of achieving continence. When they cut out the prostate and the urethra with it, how much is left seems to be important. Kegals actually strengthen and train the pelvic floor muscles to stay closed until you tell them to relax.

You need to dialog with Worried Guy. He can fill you in on his experience. I just saw him this weekend wearing khaki pants, which is a poor color for a leaker.

Good luck, and welcome to HW.

Goodlife
Posted 4/19/2011 2:12 AM (GMT 0)
I achieved pad free continence 15 months after surgery. I can do most activities without any leakage, however I wear a light pad while running.
Posted 4/19/2011 2:25 AM (GMT 0)
rainman,

i just wanted to welcome you to HW, glad you found us. you should get some good imput to your situation, I wish you the best of luck in beating the incontinence.

david in sc
Posted 4/19/2011 3:11 AM (GMT 0)
I will try to answer your questions to the extent of how I understand things.
1. the internal sphincter is actually removed as it is encapsulated and/or part the prostate. How these two sphincters work is interesting. The internal sphincter ( the one you are now missing) is an involuntary muscule. It is controlled thru an interaction with the bladder among other things. So, when your bladder gets filled to certain level, your involuntary system opens the internal sphincter letting urine pressure play on the external sphincter. This causes you to feel like you need to pee, you do not feel that urgency until the involuntary sphincter opens even though there may be some urine in your bladder. Now you decide to pee and you consciously open the external sphincter and you pee. The internal sphincter is important for continence but not mandatory as women have only the external sphincter as we do now. As you said, the prostate and maybe some other sensations that you have during an errection tell that involuntary not to open while you have an errection, so fluid from the prostate can be ejaculated so that you can impregnate, hopefully, your wife.
2. I don't know, I am guessing a little of both. more strenght and retraining?
3. Me too. Now I have a stream like I had in my twenties. Others have reported the same. My stream pre op was low which I contribute to enlarged prostate and it had been for years. Why? some restictions like the whole prostate and at least one sphincter is removed.
4. urodynaics should nail things down for your next move. In my case my Dr. had only one recomendation, AUS. And he saw no point in my waiting whereas he normally likes to wait till 14 months post RP, I was only about 10 at that time. The AUS was installed about 2 months later. It works very well.
Now, this is my take on what I would or did do. I was exactly as you describe and did the PT like you. But in my case my leakage (dripage) was 100% or in other words I never peed one time from my surgery till my AUS it all leaked when I walked. At nite or sitting I did not leak that much. If I was able to pee, even a little I would have felt that I had something to work with. Worried Guy had the sling done about the same time as my AUS and I think that fact that he did pee probably more than he leaked made him a canidate for the sling. I hope he will fill more on this.
My urodyanmics test revealed stress incontinence and appartently my external sphincter can hold hardly any pressure. Now, also like you I could start and stop urine flow with concious effort but I think it must be and stay closed in its "at rest" state. Mine didn't.
I also was put on Imipramine by my surgeon to see if bladder spasms or contactions were causing my incontinence. I took that stuff for months and it did not make me feel good and was a total waste. I think to get a better feel of where you are, I would only count pads if you are retaining enought urine in your bladder so that you are peeing some. I thought I was getting better at about 6 months out till it dawned on me that maybe I was using less pads but never retaining any urine, then the number of pads don't mean anything other than how you manage your fluid intake and activities. I hope you are not in that or my category. Anyway, I know what you are going through as do a number of others here on this site. I had my RRP on 12/15/09 and had the AUS 1/11/11. The urodynamics testing and implantion was done at Methodist Houston by Dr. Boone who is a well respected incontinence specialist.
Ron
Posted 4/20/2011 3:00 PM (GMT 0)
Thanks to all who responded, specially knotreel with your detailed responses. Knotreel, are you from the Houston area or did you seek Dr. Boone out? One more thing I would like to add. Shortly after surgery, continence was abysmal. I was leaking sitting, standing, lying down...you name the situation and I leaked. Continence lying down came back pretty quickly. I would not leak while lying down, but when the urge came to urinate, I leaked most of the bladder contents trying to get to the bathroom. Next came continence while seated, but again by the time I made it to the bathroom most of the urine was in the pad/diaper. Next, getting to the bathroom was no longer a problem if the urge came while lying down or sitting.

Now comes the part I do not understand...If I get the urge to urinate while seated or lying down, I can walk around for 10-20 minutes with no leak. It is not exactly comfortable to do this, but apparently I can stop urine flow as long as the urge is there, but just dribble standing/moving when bladder is empty or nearly so and the bladder never fills. The physical therapist didn't know exactly why this is happening. I also asked my surgeon if going to the bathroom 20-30 times a day to avoid leaking was counterproducitive to regaining continence and he thought not...just a natural reaction.

I wonder if trying to hold a full bladder for extended periods of time especially while standing/moving would improve my journey to continence (big leap of faith here) or would it be harmful. The physical therapist told me to make sure my bladder was empty before I did Kegels. Stopping and starting urine flow while doing Kegels does more harm than good. Maybe the same goes for trying to fight the urge.
Posted 4/20/2011 3:23 PM (GMT 0)
I am from the Baton Rouge area and I went to see Dr. Boone after he was recomended as being a "go to " guy. That is interesting about your continence that you get after the urge hits. I tried an off the wall method of retraining that didn't work and it was inconvienent, however it might be something that would help you since you already have some progress in that area. Now, this is NOT an joke!! Get a white styrofoam cup and hold it under your penis and walk around house ( inside, hopefully) for while while trying not to get a drop of urine in the cup. The white cup shows even a single drop easily. I read about this online and someone's uro came up with this. When you think about it, leaking while walking, train for that. This might work for you. I don't think it did anything for me but others said it helped them? Besides the privacy issues, it is not difficult to do.
Ron
Posted 4/20/2011 3:48 PM (GMT 0)
RAINMAN:
-recently I have been forcing myself to hold back on peeing, instead of reacting as soon as I feel the urge - in a sense, retraining myself to hold it (maybe fill the bladder more) and not be fearful of leaking.
-I am still leaking on average 25ml a day - one new 24 hour pad each night - usually completely dry at night
-getting geared up for the work at the garden centre - so doing motion exercises mimicking work as well as continuing kegels.
-wishing you all the best on your continence.
hugs,
BRONSON
Posted 4/20/2011 5:43 PM (GMT 0)
Knotreel, I know your area very well. Did you consider having Dr. Bardot do the surgery at Ochsner? He was my surgeon upon the recommendation of several PC survivors and the volume of DaVinci RPs he has done. Did your local urologist refer you to Dr. Lee? Those are the two big names I hear in the area.

Tatt2man, have you done this holding back training long enough to see a difference or is that how you got to 25ml/day? On my best day, I leak 45ml, but more often it averages around 300ml/day. Your leakage is almost negligible.
Posted 4/20/2011 6:28 PM (GMT 0)
rainman - I have only started that in the last two weeks - I felt I was giving in and letting the bladder control my life ( having to go pee every 30 minutes on a bad day).
I was able to enjoy outings during GFMPH without worrying about where the next rest stop would be - and even did well on the 3 hour plane ride home - only pee'd once! - what a concept!!

My worst times are stress incontinence - lifting items ( lift with your legs not with your back) and bending over to put on socks and shoes - I leak a lot then. It took about 16 weeks after surgery for me to start feeling in some control - prior to that - 4-5 pads a day and changing clothes/underwear once or twice a day due to accidents.
I am pleased with only 25 ml leakage a day - would like to be dry - so refocusing on my kegels and holding back when the urge hits.

And if I leak, I don't beat myself up over it - it happens ( just ask a female friend who has given birth to 2 or more children - she'll set you straight!)
:-)
oops, did I say that?

hugs,
BRONSON
Posted 4/21/2011 1:51 AM (GMT 0)
I have heard lots of good things about Bardot, I was considering contacting him as well as the Dr.s at Tulane ( Lee and Thomas). It just so happened that I got in contact with Dr. Lee first and was satisfied that I would be in as good of hands as possible. However I think I would have been just as hapyy with Bardot but I didn't get that far. My local uro did not refer me, I did my looking around online. In fact my local uro said that he did not recomend people to get the Robot, he said it was too hard on people in that the op could take 8 hours in what is a stressful position. He is right about the stressful position but I knew that he was either ill informed or not being truthful about 8 hours. Now there is robot surgery available in Baton Rouge and I would guess that he may now have a new story?
Post op I was doing my follow-up psa's with the orginal uro and he told me that it was he opinion that my leakage was not going to get better and he was "sending me to a fellow in their medical practice" for evaluation. That motivated me to find an incontinence expert who I would be completly comfortable with. Even though my orginal uro was right, and I thought the same as he did on my prognosis, I knew that I would not be totally comfortable with whatever he recomended and there would be some doubt. Since then I have doing my follow up with my GP as he gets my psa 0.0X rather than 0.X that my old uro does. My old uro also gave me the yada-yada-yada on the super sensitive not being good
Ron
Posted 4/21/2011 2:41 AM (GMT 0)
Hey Rainman2,
Welcome to Healing Well. I'm the "Worried Guy" that Goodlife and knotreel mentioned. And yes indeed, when I met with them this weekend I was wearing khaki pants - the first time since I had my surgery in July 2009. I had the American Medical Systems AdVance sling installed in January and the thing works.

I am a data guy and measure everything. My leak was virtually wide open for the first few weeks but steadily improved to 400 ml per day about (14 oz) by the 3rd month after that it slowly improved down to about 150-200 ml/day (6 oz). However it flattened out at 14 months. The data convinced me to have it done.
Like you, I had residual control. I could hold it for a few minutes but if I lifted something heavy I would squirt. Also walking and running encouraged leaking. And don't get me started about bedroom activities!
I made two topics that you might find interesting and helpful:
Worried Guy's Incontinence Journey -Sling (presurgery, surgery and recovery)
Worried Guy's Continence Journey (Post recovery and normal use.)

I'd be happy to talk with you about the sling if you have questions. My email is listed.
Good luck to you,
Jeff
Posted 4/21/2011 4:50 PM (GMT 0)
Rainman,

My history and story is very similar to Knotreel. The main differience is that I had a Coloplast Virtue Sling inmplanted before going to the AMS 800 AUS. The sling was no help at all in my case so I ended up with the AUS and it works great.

If you want more history you can fine links to my journey in the profile below. And, my email address is in the profile section of the site if you click on my Tallguy name.

Good luck!

Posted 5/1/2011 10:29 AM (GMT 0)

I thought I would post an update....

Urodynamics testing was done at the end of the week. I  read about the procedure and watched a video(s) of it being performed. I did have some questions going in about the procedure itself but really didn't have time to ask since a non-scheduled cystoscopy was done following testing and the doctor was off pretty quickly to see the next patient. The urodynamics test went  much as expected from the videos. During the bladder fill, I was asked to cough and bear down at four different stages of fill. It was only at the last stage (urgency at the point that if driving I would have to find a restroom fast or pull off the road to urinate) that any leakage was observed and it was minor. The suggestion was made that I try collagen bulking to address my leaking issue since I only seemed to leak when bladder is very full and I would be a very good candidate for this minimally invasive procedure. I decided to wait until I reach the one year mark post surgery before I try this or any other procedure. The doctor agreed that was a good option.

Overall, I was disappointed after leaving the doctor's office. I certainly don't know much (or anything really) about urodynamics testing, but I went in complaining that I leak when standing and in motion...not when seated or lying down. The fact that I didn't leak at all until there was much fluid in the bladder didn't surprise me. I was seated the entire time and had the extra benefit of a small catheter plugging me a little during the enitre test. Why would I leak in that position and with some extra assistance from the catheter in place? I know that various pressures were being measured during the test but I wouldn't be surpised if they were near normal since I have no incontinence issues in a sitting position. Although the test went much as the videos I watched, I thought maybe part of the test would be done standing so it was tailored to my leakage issue.

Although the doctor did not mention this, I really felt the non-scheduled cystoscopy was done because no big problems  were identified from the urodynamics test and he was looking elsewhere for other issues.  No issues, however, were revealed from the cystoscopy either. Anastomosis site looked great (he had to point it out to me for me to even see the area) and he watched me contract the pelvic muscles after he pulled past the point and saw closure.

I also questioned the suggestion of a bulking agent as a possible solution to my problem. I read an article by Dr. Sandhu  at Memorial Sloan Kettering and he quoted a success rate of 10% in men and 20% in women for this procedure and it is a procedure that must be "touched up" at regular intervals. The article by Dr. Sandhu was written in 2008 and the success rates have probably improved but the 2008 quotes were quite low.

As it stands now, I am still waiting for incontinence to improve on its own as it has for lots of other radical protatecotmy patients, as I was before any testing was done. If I ultimately decide that things are not going to get better, I will get a second, third, ... opinion before proceding further.

Posted 5/1/2011 12:35 PM (GMT 0)
Sounds like good news and bad news. Good in that it seems you definately have some sphincter to work with and bad in that you are left scratching your head still wondering what is going on. On the whole I would consider it good news. You still have a couple of months to your one year aniversery. Maybe at this point you might consider going to another PT who has a different protocol, that might shake thing up. Just from what you have said, I am guessing that you are not a canidate for the AUS like Tallguy and I have. The sling might be something to be considered at some point later on but you may not need any invasive type proceedure or lets hope not.

Ron

Posted 5/1/2011 1:47 PM (GMT 0)
Rainman,

I find myself in a similar situation to you, I'm currently 11 1/2 months post open surgery and still leaking. I started with about a dozen pads per day and have tapered down to 1 pad per day at present. I don't have a way to measure my leakage so I poured water into a pad and it felt like 2 ounces (60 ml) was about what I'd leak on an average day.

I started with Tena moderate guards for men (20 pack) then went to the Tena pads moderate (20 pack) and have recently picked up a pack of Tena ultra thins light pads(30 pack). The pads are not labelled "for men" like the guards, so I'm assuming ther're unisex or womens. I find I can get by on one moderte pad a day if I'm not doing any lifting, any form of exercise makes me leak and if I go for a walk I tend to drip most of the time. Yesterday evening I walked 3 miles and leaked about 1-2 ounces, I was able to pee a little bit when I got home so I can retain a small amount when walking. (maybe 25 ml).

I also have the sensation of being able to hold without leaking if I have a full bladder and tend to leak more when I am almost empty. I was giving myself a year before going back to the continence clinic for more advice. I do kegels through the day and also do 20-30 km bike rides each day, although I sometimes wonder if the cycling is agravating the situation as I tend to leak more after a longer ride.

I also have a strong stream when my bladder is full but this only occurs when I drink plenty of water and have been seated. I'm interested in which option you choose to remedy your situation. I'm just not ready to commit to surgery yet as I see people from this forum sometimes reach continence after 16 months, I'm still hopeful.

r

 

Posted 5/1/2011 3:05 PM (GMT 0)
Arch,

You sound like my long lost twin in that I could have written your post although I leak a little more than you do. I went on a 3-mile walk this morning and leaked 2.1 ounces (~ 62 ml). I never really felt like I was leaking during the walk but would frequently have a slight burning sensation at the end of my penis  during the walk. I think that translates into some leaking drops. I follow that with a 45-minute bike ride and observe no leakage during the ride (I weigh the pad before and after the ride and the walk).  Before the walk or ride, I always empty my bladder as much as possible so I am leaking with a relatively empty bladder and not much liquid consumed prior to the walk or ride. On the other hand, I can have a moderately full bladder and can walk around the house  for twenty minutes and not leak a drop. Like you I am now retaining some urine during the walk, but it isn't much. Two months ago, however, I was retaining none.

Prior to the Urodynamics testing, I was on 5mg/day of Vesicare and 50mg/day of Imipramine. One month after surgery when I  first complained of incontinence the surgeon gave me 5mg and 10 mg samples of Vesicare to try with a prescription option for either. I was to self-medicate wth 5mg and then go to 10mg/day if I thought the 5mg helped but not enough. If neither seemed to help, discontinue and don't fill the presciption. I actually thought the 5mg dose did more harm than good at that stage and the 10mg had side effects which i did not tolerate well and seemed to have no added benefit. I discontinued the Vesicare and did not start again until three months later when I was referred to an incontinence specialist.

I have definitely improved continence-wise in the last few months, but I am not sure it is attributable to the meds or the healing process. To test this out I have opted to discontinue both the Imipramine and Vesicare. If I see symptoms becoming worse, I will add the Imipramine back first and then the Vesicare. It is early in the process and I see no difference in terms of leakage. I realize, however, that it takes 2+ weeks for these meds to load and also some time to unload.

The thing that confounds me most is the leakage occurring on a nearly empty bladder. The doctor diagnosed my leakage problem as one occurring on a full bladder. I told him my observation was that I had control with a full bladder and little control on an empty bladder. When I said that, he said "Really" and that was his only response. 

Posted 5/1/2011 3:52 PM (GMT 0)
Rainman,

An astonishing thing happened this morning, after I posted here I decided to go for a 3 mile walk, I never do this in the morning. All I had to drink this morning was 1 cup of decaf coffee (my one vise) and I emptied my bladder before I left. I felt like I was totally drip free for the first mile and then had the same feeling you get (bit of a burning feeling) that I might have leaked a drop. I'm in a rural area so thought I would relieve myself but decided...no I'll wait until I get home. When I arrived home I checked and was astonished to see my pad was still basically the same as when I left. I was able to empty 30 ml urine, not much but at least I held it thoughout the walk.

This is new for me and I can only attribute it to my muscles being less tired in the morning than later in the evening when I usually go for my walk. I really don't leak when I'm on my bike unless I sit on the seat with weight centered on the perinium, this causes a squirt.

This gives me a bit of renewed hope that there is an end to the drip. For interset sake, I also ride a motorbike and don't leak while riding but if I don't clench my muscles when getting on and off I will leak. Same with the bicycle, I've got to clench when I lift my leg to straddle the seat.

My urologist is aware that I leak and said it was to early to discuss options and that he would not prescribe drugs, which is fine by me.

Thanks for your comments, I'll watch for your progress when you post.

r

 

✚ New Topic ✚ Reply