Incontinence After Prostatectomy; Will It Ever End?

[Archives1]

I am now four months after radical prostatectomy. I still am leaking anywhere from 0.5 oz to 1.5 oz of urine every day. I leak more on days on which I rake leaves or do other strenuous chores. I do go to the gym every single day to ride the stationary bike and do some minor weight lifing. I have read the literature and many people become continent by four months, although some take as long as a year. I am ready to give up and expect to live in diapers the rest of my wasted, wet life.

My doctor says I am still healing. I think he is bullshitting me because he does not want to admit that one of his patients would not completely heal. He has nothing to offer except he did send me early on to physical therapy. The therapist has given me pelvic floor muscle strengthening exercises to do. I do them as prescribed without fail. I think they are a waste of time because either I have no pelvic floor muscles or mine are incapable of being strengthened. I can't see the point of continuing to do exercises which are not fixing the problem.

It is also possible that my surgeon messed something up when he did the surgery but does not want to tell me that is a possibility. Any ideas or recommendations?

 

[Archives1]

Hopefully you will continue to slowly improve over time, but don't be surprised if you never get "there" (ie. back to full continence). When they do the surgery they are permanently altering various components of your urinary tract system. If needed "parts" are removed in the surgery, you may reach your full healed potential, but still not have full continence.

I had a laser procedure 3 years ago to remove prostatic stones. The doctor made it sound like a walk in the park. I had already had previous urinary procedures, with absolutely no continence issues. So I assumed the same outcome. Bad assumption. I do Kegels religiously; take Myrbetriq & Alfuzosin; follow all the experts advice on everything related to reaching continence, but I will need 1-2 medium TENA pads the rest of my life (or until stem cell treatments reach the market) because my internal sphincter is missing tissue needed to provide continence. Just the way it is.

I hope you reach your desired outcome, but be prepared for a "new" normal.

 

[Archives1]

There is no doubt in my mind that my doctor is bullshitting me for whatever reasons and that I will die in diapers. The fact that he is bullshitting me is really irrelevant because I don't believe him and am slowly getting used to the idea that I will never be continent. I don't know why the docs don't just level with the patients and tell them to figure out a new way to live instead of trying to instill false hope.

On the other hand, according to the literature 95% of all the prostatectomy patients become continent over time. However, no one can tell me what is wrong with me physiologically that I am remaining in the 5% of the poor souls who will either die in diapers; or need further treatment which will probably only mess them up more. I guess it is better than dying of cancer, but I was hoping to be in the 95% of lucky patients. Maybe the doc screwed something up and doesn't want to 'fess up. Who knows, it's all bullshit to me.

 

[Archives1]

Have you been doing the kegels, about 3 sets per day, since the catheter came out? I'm at 3 months, and I'm not convinced that I won't see further improvement. (I see my surgeon this week for the 3-month follow-up; we'll see what he has to say.) Currently, my leaking seems very similar to yours, except that I don't know the volume. How are you measuring that?

 

[Archives1]

I have been doing not only kegels, but also additional pelvic floor muscle strengthening exercises as prescribed by a physical therapist, who is also bullshitting me that things will get better. I do them daily and never miss my sets. The sad part is that I have no idea why some guys become continent at one month, or two months or three months and others don't. What is even sadder is that the docs don't know either.

It is just a field of medicine where the docs are clueless as to why some get better and others don't. They prescribe the exercises and I guess they work for some and don't work for others. I guess some are lucky and others are not so lucky.

As for the volume, it can be determined by knowing that a gallon of water weighs about 8.4 pounds. I put my pad on a food scale at the end of each day (I wear one per day) and note the weight. Then, it is easy to figure out the volume from the weight by doing the math. You should check on how much a gallon of water weighs because I put down 8.4 pounds from memory and I could be wrong. But, if I am right, in a gallon of water (I the weight of a gallon of water with a gallon of urine) there are about 134 ounces of weight. There are 128 fluid ounces, so each ounce of weight represents slightly less than one fluid ounce, or about .955 fluid ounce per 1 ounce of weight. For the small of amounts of leakage in most people assuming it is a 1 to 1 ratio is close enough.

Good luck and I hope things turn out better for you than they have for me. Hopefully, your doc will level with you about what is going on and what are your real chances of recovery. I don't like being bullshitted by medical professionals. But, I think they have a hard time believing that someone they have laid their hands upon will not get better. It is probably hard for them to admit that one of their patients is a lost cause.

 

[Archives1]

I'm sorry to see that your exercise regimen isn't doing better for you.

Thanks for the information. It hadn't occurred to me to convert to weight; I'll try that before my visit with the surgeon this week. I use two pairs of pull-ups on most days: I don't like the wet feeling or the odor I get. So I'll need to weigh twice, but it seems like a good idea to know the approx. volume.

I just looked up my notes from my pre-op visit with the surgeon. Here's what he said:

There's a good chance of ultimately regaining bladder control:
70% chance of no pads
20% chance of occasional leaks
10% chance of leaking that might need a fix

Of course, that general info was offered before he actually saw and cut out what needed to be cut out; he may be able to be more specific now. He also told me then that it often takes three months for a man to get a fair measure of control back: I assume that's one reason for the scheduling of this week's visit. So I may have more info later this week. I hope.

But it does seem that there's a lot of statistics-based guessing in this -- and, apparently, wishful thinking at times. I hope you'll keep us posted.

 

[Archives1]

From what I have read and been told by multiple physicians, she success of the "nerve sparing" part of the surgery has a lot to do with continence success. If you dont already know the answer in your specific case, be sure to ask. There are 2 sets of nerves so if both couldn't be spared its not a good indication to regain much, if one spared you're likely to have problems and if both were spared then that's best, but even then there could be damage.

 

[Archives1]

One important thing to realize. Kegels & all other pelvic floor exercises just affect the EXTERNAL sphincter, which is primarily responsible for the "timing" of urination (ie. when your bladder is telling you that you have to go, but you must continue to hold it, that is your external sphincter doing the work). The sphincter that is responsible for preventing any leaks is the INTERNAL sphincter, which is under involuntary control (ie. you cannot tell it to "tighten up"). So if your problem is with your internal sphincter you can do Kegels till the cows come home and you will likely continue to have leakage. I leak a little all day long. Drip, drip, drip. Sometimes I'll have a short "spurt" if I'm exerting myself physically. But most of the time I'm not even aware of it. If I have a full bladder I can hold it with no problem. But the inability of my internal sphincter to completely shut is not going to change.

I'm pretty sure a cystoscopy will confirm if you have deficiencies with your internal sphincter. My urologist does mine using a big screen monitor, and he points out to me certain things that he's looking for. When we got to my internal sphincter is wasn't shut like it would be in a normal person. BTW, he's not the urologist that did my last surgery, who I am furious with for not telling me that incontinence was a high risk factor for me due to prior surgeries and radiation treatment for prostate cancer. But at least my current doctor is giving me an accurate assessment of my condition.

 

[Archives1]

Thank you for that detailed explanation. It's more than my urologist told me. I would guess that I have internal sphincter damage and will never be continent.

 

[Archives1]

Report on my 3-month follow-up:

I appear to be leaking about an ounce a day now; at the visit, the doc said that's good. He said that I will probably see continued improvement over the next 3 months, and that after about 6 months there will probably be little if any further change (without surgical intervention at some future point, which I don't plan to do, even if I'm still leaking an ounce a day).

I did ask about the nerve-sparing: he said that the nerves are related to erectile function but not to urine control. (It's odd that these docs disagree on so many things.) In my case, he had to take out the nerves on one side because the cancer was up against that side of the gland, but he was able to spare most of the nerves on the other side. He said that the sides have some redundancy, so I may recover erectile function (or at least some percentage of it). Given my age (70), he said I'd be a superhero if I had recovered most or all of it by now.

At this point, I'm just happy to be rid of the cancer, which was Gleason 8. The doc estimated about an 80% chance of no recurrence in my case, and that feels like good odds.

Thanks for the tip about measuring. I got out my old postal scale (which is so old that its first-class letter rate is 13 cents for the first ounce and 11 cents for each additional ounce) and weighed my pull-ups before and after. It turns out, if I did the arithmetic correctly, that a fluid ounce (U.S.) of urine weighs just over an ounce, so it was just a matter of weighing and writing the number down. It was useful to have a number to give the doctor. And it's helped me feel confident enough now to switch, when the pull-ups box is empty, to guards or pads.

 

[Archives1]

Yes, weighing gives you some idea of what is going on---getting worse or better and it is objective rather than subjective. My doc also told me I would improve for up to one year. I am now at four months and have one pad daily weighing about one-half ounce the last couple of days. I don't believe a word the doc tells me but that is because I am the eternal pessimist. Thanks for giving me the update on your situation. I appreciate the comparison.

 

[Archives1]

Hi,
Four months after radical prostatectomy isn't long. Most of what I've read indicates that improvement in urinary continence occurs up to a year post surgery while erections take 2 - 3 to return, if they do.
Also, just want to say, you can be left incontinent. I am 4.5 years post surgery and am padded with Depends and diapers 24/7. I am used to it and it really doesn't bother me.

 

[Archives1]

What bothers me is that, from the literature, I know that many patients have become continent one month, two months, three months or four months after surgery. So, why am I not among that group instead of being a pissant? I guess because I am a pissant and what we do is keep pissing. Anyway, thanks for our thoughts and I am sorry to hear about your situation. At least you are handling it better than I am handling mine.

What I have also learned from this experience is that the doctors don't have a clue as to why some become continent early after surgery, while others never become continent. It is a complete mystery to them and they don't understand it all. But, because they want to keep the impression that they are gods, they won't admit it until confronted in detail about why some heal and others don't. They simply have no idea.

I am not criticizing the medical profession for not understanding the process better, but I think they should stop bullshitting patients and tell them the truth. The truth is that most patients might become continent, but some will not; and it is mostly due to luck. Maybe the kegels help some, but it is mostly luck that determines whether one becomes continent. The docs don't want to admit that because it makes it seems as though their almighty group has nothing to do with the outcome and that is embarrssing to them. I don't like bullshitting doctors.

 

[Archives1]

When i asked my Doctor if the 2 nerve bundles on either side of the prostate only controlled erections or did they control bladder function as well; his reply was "Good question." In other words, the sorry sons-of-side-street-whores do not know.
For these Urologists, every prostate they remove is like a notch in the belt of an old wild west gunfighter. All they care about is numbers. Oh, I've removed 2,640 prostates, my Urologist told me. Bragging rights are all they are interested in. They could care less about your bladder control. They dance around direct questions, and minimize potential side effects.
The next step is letting them shove a probe up my asshole, and apply electric current in an effort to 'shock' nerves and muscles back to life. If that doesn't work, another surgery is the next step. A big fat NO to that. Looks like I'll be wearing a condom drain for the rest of my life.

 

[Archives1]

So, I now have some congestion and cough to clear my throat. Every time I do, I piss in my pants. I assume this is normal, but I am so fucking tired of stinking and being wet. This will never end will it? I am now starting to wonder if my fucking surgeon fucked up something and didn't tell me. I need to get the Report of Operation and have it reviewed, but, if he did, he would not put it in the report anyway. So, what's the point?

Can a competent doc do any kind of testing to tell me if my surgeon fucked me up somehow; or if this is just normal leakage following the removal of my fucked up prostate. Any other ideas? Thanks.

 

[Archives1]

@pissant I do feel for you and can understand your feelings. It is 2 years since my surgery and I still leak several times a day. I get an odd sensation in my bladder and then very soon after I lose whatever is in my bladder. If I m lucky it happens soon after self Cathing and there isn't much to come out. If I am unlucky then it is getting close to Cathing time and I can leak 500+ ml in one go. I have had loads of tests and seen 3 different urologists, but they have come up with nothing apart from a diagnosis of bladder and bowel dysfunction. I could have told them that and saved the NHS a lot of money. Anyway, try not to get down about it, you are not alone. I think that the biggest help I have had is from this forum and a couple of men I have met in hospital. Have you found anyone in a similar situation in your area you can talk with? This really helped me. Cheers Phil

 

[Archives1]

Well - Fiddle....
Reading these comments has certainly been an eye opener...
I had a hoLEP procedure done (nov-th, 2019) - with some complications:
1- I am a T2, Diabetic (pretty well controlled. Really watch my diet).
2- July 15th, 2019 Had Gall Bladder removed (out of control infection, Gangrene had set in. Lucky to have survived).
3- During all this, they cut off my flow-max, leading to complete stoppage of urine flow and installed catheters, till surgery. about 100 days of catheters and couple of heavy duty UTIs to contend with
4- Biggest complication: Prostate had grown in size to nearly 400 grams (happens to less than 4 or 5 men/per year).... After hoLEP, surgeon said he took out nearly one pound of bio-mass..
Good News: Healing well (my local urologist said healing would be more like 9 months, than the 90 days, the hoLEP surgeon estimated.
Some days still get bloody urine....
Biggest problem: Frequent urge to urinate (like up to 4 times/hou), but can only urinate about an ounce or two. (My normal habit is to consume about 120 ounces of water/day)... I do void completely (just in one or two ounce portions)....

I think my biggest problem was expecting an under 90 day return to normal. (YES - I agree with all, urologists are not too good at PLAIN SPEAK. - All those comfy statistics mean nothing, when you are the guy that has problems.

My thanks to all who posted -- Not the news I wanted to hear, but at least I no longer feel like POOR ME and WHATS WRONG... I still have high hopes that I will return to a life w/o continence issues...

 

[Archives1]

Physlink: Thanks so much for your reply. I can't even imagine leaking 500 ml in one go. Up until this cough-caused additional leaking, my leaking has been about 30 ml in one day total. So, I am nowhere near your level. I guess I am just a whiner, but it is hard for me to take being so dysfunctional. You are to be praised for hanging in there.

 

[Archives1]

@pissant fortunately 500 ml isn't too often, for some reason 300 ml is a common figure, maybe my bladder thinks that 300 ml is full. I don't think you are a whiner, afterall, a leak is a leak, the size just determines the protection needed, cheers Phil

 

[Archives1]

What bothers me is that, from the literature, I know that many patients have become continent one month, two months, three months or four months after surgery. So, why am I not among that group instead of being a pissant? I guess because I am a pissant and what we do is keep pissing. Anyway, thanks for our thoughts and I am sorry to hear about your situation. At least you are handling it better than I am handling mine.

What I have also learned from this experience is that the doctors don't have a clue as to why some become continent early after surgery, while others never become continent. It is a complete mystery to them and they don't understand it all. But, because they want to keep the impression that they are gods, they won't admit it until confronted in detail about why some heal and others don't. They simply have no idea.

I am not criticizing the medical profession for not understanding the process better, but I think they should stop bullshitting patients and tell them the truth. The truth is that most patients might become continent, but some will not; and it is mostly due to luck. Maybe the kegels help some, but it is mostly luck that determines whether one becomes continent. The docs don't want to admit that because it makes it seems as though their almighty group has nothing to do with the outcome and that is embarrssing to them. I don't like bullshitting doctors.