A patient’s story: Overcoming incontinence

Christopher Miller* is a real estate agent who is married and has two sons. About five years ago, at age 56, Mr. Miller was diagnosed with prostate cancer. After a great deal of research and consultations with five doctors, Mr. Miller decided to have a radical prostatectomy. [Editor’s note: The name of this patient and certain biographical details have been changed to preserve his privacy. All medical details are as he reported them.]

Although he considers the operation a success, in that it has apparently eradicated the cancer, Mr. Miller struggled for almost two years to overcome persistent urinary incontinence. For much of that time, he felt ill-served by the medical community. The story of how he eventually overcame this problem may be helpful to other men in the same situation.

What was going through your mind when you learned you had prostate cancer?

Like anyone else, I was surprised. You never think it’s going to happen to you. The biggest fear, of course, is that it might be life-threatening. Even though I knew this is generally a disease that takes a long time to grow, I still wondered how much longer I might have to live. So I thought of things like: Is my family provided for? Are my financial affairs in order? Will my children be secure? Will I ever meet my grandchildren?

Of course, I was very concerned about my wife. We’d been married 32 years at that point, and I worried about what impact this would have on her. She’s a very strong and good person, and she remained at my side every moment of the time. And that support proved to be invaluable.

How many physicians did you see before making a treatment decision?

As I recall, I saw two oncologists and three surgeons. They were all the best doctors, all highly recommended.

Why did you decide on a radical prostatectomy?

We had a meeting with a radiation oncologist at a major teaching hospital. He looked at my medical history, then he looked me in the eye, and he said, “I know I can cure you, but the research is not on my side. The data more strongly support your having surgery.” He said this in front of a room full of doctors.

Here was a man who was a radiation oncologist, who was saying, “Maybe you should have surgery.” So even though I had talked to other people, I think that was really the convincing moment. My wife and I were looking for a cure, and all of the information we were getting was that, given my set of circumstances, surgery was best. So then it was a question of who was going to perform the surgery.

Did anyone mention active surveillance as an option?

They did, but they frowned on it. Of course, this was four or five years ago. And all the information I was getting was, “Get this thing out of you.” Another factor was that I was young enough that people were saying, “Look, you’ve got a long life to live. If you were in your 70s, it might be a different story.”

Did the doctors advise you about possible complications from surgery?

They all explained that I might develop impotence or incontinence afterward. One reason that I finally chose the surgeon I did was because the complication rates he quoted were lower than the others’. He really believed that there was less than a 1% chance that I’d have an incontinence issue, and a 30% chance of impotence. [See Table 1 for a more accurate assessment of the risks of complications.]

And was that a deciding factor in your selection?

Absolutely. I mean, here were all the big guns in town, and his numbers seemed like the best. I also asked around. And the feedback was, “He’s got great hands.” We knew that his bedside manner left a lot to be desired, but I thought, “Who needs bedside manner? Let’s just get the best person, with the best hands, and let’s get it done.” And that’s how we selected him.

Table 1: Impotence and incontinence

The reported statistics on the likelihood of developing impotence or incontinence after prostate cancer treatment vary widely, as shown by the ranges below.

Procedure Percentage of men who may develop impotence Percentage of men who may develop incontinence
Radical prostatectomy 30%–70% 2%–15%
External beam radiation therapy 30%–70% 1%–2%
Brachytherapy 30%–50% 2%

How did the operation go? And when did it become apparent that you might take longer to recover than you had been led to believe?

The operation went fine. I went back to work very quickly, and in most respects I felt fine. I was incontinent immediately after surgery, but I was led to believe that the problem would straighten itself out within a few weeks or months. But it didn’t.

Did you share your concerns about incontinence with your surgeon?

I did, during follow-up visits after the surgery. I probably visited him three to four times during the first six months after surgery. He told me the problem would get better, and for the first month or two, I believed that. But as time went on, nothing was getting any better.

And he didn’t seem to care. In a typical visit, I waited a half hour or an hour to see him for literally five minutes, and then he moved on to the next person. So I finally gave up on him.

What sort of problems were you experiencing?

I had no problem at night, and I think for most people that’s the case. But when I got up, I was going through anywhere from four to five pads a day. I used a high-absorbency pad that tied around my hips on both sides, and I’d change it throughout the day. I tried doing Kegel exercises, to control the flow, but nothing worked. I was in trouble. I’m an active person. It was embarrassing, and it was the last thing I wanted to deal with. [For more information, see “Kegel exercises,” below.]

Kegel exercises

The strength and proper action of your pelvic floor muscles are important in maintaining continence. Here’s how to do basic pelvic muscle exercises, named for Arnold Kegel, the physician who first developed them:

  1. Pretend you are trying to avoid passing gas. You will feel a contraction more in the back than the front, like you are pulling the anal area in.
  2. Practice both short contractions and releases and longer ones (gradually increasing the strength of the contraction and holding it at your maximum for up to 10 seconds).
  3. Repeat multiple times, several times a day.

Was impotence an issue?

Forget about sex! That was the last thing on my mind during this period. I knew I had to deal with the incontinence issue first.

So what did you do?

After about a year of waiting for this to get better, I consulted with another surgeon. He recommended a sling procedure. I decided I would try this to see if it would make a difference. That was my second mistake. It was a very difficult operation, more difficult than the radical prostatectomy. [For an explanation of the surgical options, see Table 2.]

Did the second operation alleviate your incontinence?

No, everything was basically the same. That was a disappointment. After I told a friend about all my mishaps, he suggested I ask about having an artificial sphincter inserted. He’d heard it was very successful. I did consult one surgeon about it, but he hadn’t done many of these operations.

So I was at a dinner, about a year and a half after I first developed incontinence, and I was talking to a woman whose husband was a prostate surgeon who had passed away. And I told her about my dilemma. She gave me the name and number of one of her husband’s colleagues, and told me to use her name when I called him. So I did.

When I met with him, he explained the artificial sphincter procedure to me and my wife. I was immediately comfortable with him. He performed the operation. And I must say it has changed my whole life for the better. I still wear a very tiny pad, just in case there’s a leak when I bend a certain way, or lift something, just for protection more than anything else. And I’m very happy with it.

Table 2: Surgical options for incontinence after radical prostatectomy

If you’ve experienced persistent and bothersome urinary incontinence following radical prostatectomy, even after 6 to 12 months of trying conservative measures like Kegel exercises, it may be time to consider surgery. Current options and success rates are summarized below, based on a recent review article in Current Opinion in Urology [see “For more information: Urinary incontinence” at the end of this article]. Be aware that many of the studies cited involved small numbers of men.

Type of procedure Success rates Comments
Artificial sphincter

The surgeon places a fluid-filled cuff around the urethra and a small pump in the scrotum. The cuff prevents urine from escaping until a man squeezes the pump, releasing pressure on the urethra and allowing urine to flow (see Figure 1).

  • In a study involving 47 men who were followed for an average of three years, 87% reported regaining continence.
  • In the same study, 95.7% of men said they were satisfied with the operation.
  • 23.4% of men developed some type of complication, most often mechanical failure or infection.
  • 25.5% of men required some type of follow-up surgery to adjust the device within five years.
  • Considered the gold standard of therapy for severe urinary incontinence following prostate cancer surgery.
  • It may take 4 to 6 weeks to heal from surgery, during which the pump cannot be activated.
  • Possible complications include infection, erosion of tissue around the implants, and malfunctioning of the device.
  • Additional adjustment surgeries may be necessary.
Bulking agents

A bulking agent is injected into the tissue around the urethra, so that it’s narrower and closes more readily.

  • 17% of men became completely continent in one long-term study, and remained so for an average of about 11 months.
  • Other patients in this study enjoyed some degree of relief for an average of six months.
  • In another small study, evaluating injection of carbon microspheres in eight men, none of them became completely continent.
  • Collagen is most often used as a bulking agent.
  • This procedure can be performed on an outpatient basis.
  • After the injection, you may experience irritation for a day or two whenever you urinate.
  • Success may diminish over time as bulking agents (especially collagen) are absorbed into the body.
  • This may be best viewed as a temporary measure or as an option for men who cannot undergo invasive surgery.
Bulbourethral sling surgery

The surgeon makes an incision between the scrotum and the rectum and installs a supportive sling under and around the urethra, anchoring it to each side of the pelvic bone. By placing pressure on the urethra, the sling helps retain urine until the bladder fills.

  • In one study involving 71 men who responded to questionnaires following surgery, 36% regained continence (as indicated by not having to use an absorbent pad), while 68% used one or two pads a day.
  • Another study, involving 36 men followed for a year, compared two types of slings. It found that 56% of men who received a pigskin sling regained continence, while 87% of those who received a silicone-mesh sling did.
  • A third study, involving a Dacron or polypropylene-mesh sling, involved 30 men and found that 66.7% regained continence.
  • Several types of sling procedures exist, but this remains the most common.
  • Slings are made of different types of materials, such as collagen or silicone mesh.
  • Surgery is challenging and may involve transplantation of the patient’s own tissue to support the sling, adding to postsurgical discomfort and complications.
  • Complications can include infection, discomfort, and a shift from incontinence to difficulty urinating.
Source: Current Opinion in Urology, March 2006.

Could you explain exactly how this works?

The surgeon inserts a small pump in the scrotum, which is attached to a sphincter cuff and a small balloon located near the belly button [see Figure 1]. When I feel the need to urinate, I go to the toilet, and I squeeze the pump in my scrotum with one hand. By pressing the pump, I deflate this cuff, and the pressure comes off the urethra. So at that point I’m able to urinate. Then probably 35 to 40 seconds later, the balloon fills back up. By then I’ve finished urinating, or if I haven’t, I do it again.

Figure 1: Artificial sphincter

Artificial sphincter

An artificial sphincter is a surgically implanted device with three major components. An inflatable cuff surrounds the urethra; when inflated, it prevents urine from leaking out of the bladder (see A). A pressure regulation balloon implanted in the lower abdomen ensures that the cuff remains inflated until it is time to urinate. At that point, a man squeezes a pump located in the scrotum, which deflates the cuff enough so that urine can flow (see B). The cuff then reinflates on its own.

Are you aware of this material in your scrotum when you’re not using it?

Not unless I feel it with my hand. I can walk around, exercise, do everything I normally do, and I don’t feel it. One challenge is riding a bike, because you need a flat seat so that your weight is better distributed, rather than concentrated in the middle. So I have to get another seat for my bike. But I can go out now and play football with my boys. I can do anything I want to do.

What was the recovery from this operation like, compared to the others you had?

It was probably a quarter as hard as the other two. It was nothing. I went in. I think I stayed overnight. And then I was back at work in a day or two.

What about potency? We haven’t talked about that yet.

Once I dealt with the incontinence issue, when I felt that I was 98% back to normal, then I could really focus on the sexual part. I couldn’t up to that point.

I’m not totally impotent. There are times when I can have intercourse without the aid of any chemical. But, I must say, it does help.

You’ve tried an erectile dysfunction drug?

Yes, but I’m not a “druggie” kind of person. If we want to go that route, which is very helpful in terms of creating more firmness, it means taking a pill and planning ahead. Sex is no longer spur-of-the-moment.

For me, the biggest change is that dealing with all of this enabled my wife and me to readdress our sexual life. And I think, as a man, you sort of think it’s all about being hard and being up, and I think what has happened is that I’m now able to focus more on the other person, which I might not have been doing as well prior to this operation. It’s made our sexual relationship deeper and stronger.

Because it gave you an opportunity to talk about things?

Yes. And sometimes the way we’ve been doing things is not necessarily the best way. So it’s given me time to reflect about how to make it different and be more thoughtful, and I think that plays out well for my wife.

Knowing what you do now, what advice can you provide to people who are going to be reading this story?

I think you have to find a doctor who will give you the right information. The hurt for me was not necessarily that I developed incontinence. I just wished my original surgeon had been more honest with me. And I’d advise other men that they really need to question the numbers about side effects. And if they know going into surgery that the likelihood of complications is high, then they’re prepared.

What I can’t understand, because surgeons have been performing prostatectomies for years, is why the information about incontinence and impotence isn’t more accurate. There is information that is available, but it’s not real. It’s a shame. It’s not right.

Of course, in a typical office visit, sometimes the doctor can’t address all these issues.

But my surgeon didn’t even ask. And where do I end up on his statistical map? I think urologists need to start dealing with this issue.

Urinary incontinence: Common and persistent

Although most reported statistics on the incidence of urinary incontinence following radical prostatectomy for prostate cancer indicate that the problem affects 2%–15% of men (see Table 1), this is likely understating the problem. Men are often reluctant to mention the problem to their doctors or, as in Mr. Miller’s case, find that their doctors don’t ask about it. Another problem is that relatively few studies have examined how long urinary incontinence persists and what proportion of men affected seek out interventions, as Mr. Miller did.

One study that sent periodic surveys to 279 patients to proactively seek their responses both before and after treatment for prostate cancer, which was published in the Journal of Clinical Oncology, found that at three months after surgery, 58% of men reported wearing an absorbent pad in the previous week, and at 12 months after surgery, 35% reported using a pad in the previous week. The investigators also asked about urinary leakage, assuming some men were using absorbent pads as a protective measure but might not be leaking urine on a regular basis. They found that at three months after surgery, 24% of men reported leaking urine “a lot” in the previous week, and at 12 months, 11% were still experiencing the problem. These results confirmed earlier studies, done on a retrospective basis (asking men to recall a problem, rather than report it as it occurred), which found that 31% to 40% of men either wore protective pads or experienced urinary leakage.

Larger studies, reported more recently, indicate that the problem of urinary incontinence often persists after surgery for prostate cancer. For example, an analysis of the outcomes of 1,291 men who underwent radical prostatectomy, published in the Journal of the American Medical Association, found that 8.4% remained incontinent 18 months or longer after surgery. Another study of 901 men treated with surgery, published in the Journal of the National Cancer Institute, found that 14% to 16% were incontinent five years after treatment. Finally, an analysis of the Medicare claims records of 11,522 men who underwent radical prostatectomy, published in the New England Journal of Medicine, found that, depending on age, anywhere from 18% to 24% of men continued to experience incontinence more than one year after surgery, and 7% to 9% sought out some type of corrective procedure, such as the placement of an artificial sphincter.

The flip side is that the majority of men who undergo treatment for prostate cancer regain continence. And even men who become incontinent are willing to accept that consequence as they weigh all the risks and benefits of cancer treatment. To read these studies yourself, see “For more information: Urinary incontinence,” below.

For more information: Urinary incontinence

Begg CB, Riedel ER, Bach PB, et al. Variations in Morbidity after Radical Prostatectomy. New England Journal of Medicine 2002;346:1138–44. PMID: 11948274.

Klingler HC, Marberger M. Incontinence after Radical Prostatectomy: Surgical Treatment Options. Current Opinion in Urology 2006;16:60–4. PMID: 16479205.

Potosky AL, David WW, Hoffman RM, et al. Five-Year Outcomes after Prostatectomy or Radiotherapy for Prostate Cancer: The Prostate Cancer Outcomes Study. Journal of the National Cancer Institute 2004;96:1358–67. PMID: 15367568.

Stanford JL, Feng Z, Hamilton AS, et al. Urinary and Sexual Function after Radical Prostatectomy for Clinically Localized Prostate Cancer: The Prostate Cancer Outcomes Study. Journal of the American Medical Association 2000;283:354–60. PMID: 10647798.

Talcott JA, Rieker P, Clark JA, et al. Patient-Reported Symptoms after Primary Therapy for Early Prostate Cancer: Results of a Prospective Cohort Study. Journal of Clinical Oncology 1998;16:275–83. PMID: 9440753.

Originally published April 1, 2007; last reviewed April 22, 2011.

Comments
140
William Lombardi

This whole blog reads like a sales pitch. I have had a radical prostatectomy and my incontinence is the same as described…good when lying down or sitting…if I move…I urinate. Doing Kegels. No change. I find this blog to be absolutely offensive. To post some made up story (the patient doesn’t want to be identified…yet he preaches the wonderful benefits of having an artificial sphincter implanted..so wonderful that he wants to remain anonymous) to clearly sell a medical device is the lowest form of bottom feeding. And it just so happens that he is having dinner with a friend and she is…coincidentally…the wife of a dead prostate surgeon (you mean…a Genetourinary Oncologist?) who suggests this miraculous device. How pathetic. Do you people have ANY idea how depressing…disheartening and thoroughly frustrating this whole mess is. I am 54…otherwise healthy…in very good shape and my life…as I knew it…is over. I can’t cycle…work out at a gym…and can barely get through a walk without completely soaking a heavy duty pad…or those stupid underpants that make you look like you are walking around with a load of crap in your pants. Again…it is reprehensible that you would pray on the vulnerability of someone like me to make a sale. Precisely what is wrong with this country. This blog epitomizes this.

Angrily:

W Lombardi

Any responses from you or Harvard Medical School will go unanswered.

I to had robotic prostectomy in September 2015. I have inconstinence for 3 months and the flow is as bad as it was since the catheter came out. I go thru 7 heavy depends a day, and leak when I get up or walk or go up steps. I have had 8 therapy sessions for legal and it is not helping. I’m in the same boat as you. Don’t know where to turn.

Leonard

Please call me. I believe u n don’t want anymore nightmares. Almost died already from stupid Drs. 337-714-9230

I hope this email finds you confidential but probably not. I just turned 52 and had open rad 5 years ago. Problems and depressed but I would like to talk to you. I was very athletic too and can’t do anything now. God bless

Mike

Mike here to all you men with leakage. I am 8 months out from surgery, I still to this day experience leakage using 4 to 5 maximum depends a day. I have had 4 weeks of pelvic floor therapy! No help at all with leaking, the more I drink the more I urinate and or leak.
If I had to do this again I would have done nothing no surgery nothing. I am 67 was very active, playing competitive golf, swimming and working out? Not anymore I am miserable, frustrated and depressed.

Barry Levine

I see that editors have removed information I posted that would have been helpful to Mr. Lombardi, about the use of external penis clamps. I merely named what I thought was the best of the lot, and offered some tips on use.
The editors thereby give credence to Mr. Lombardi’s claim that this page is flackery for the AUS, an implanted gadget which, at a minimum, has a 1 in 5 chance of requiring further interventions.
I urge Mr. Lombardi to search the internet for information on external penis clamps; there are alternatives to further invasive procedures by the Medical Industrial Complex. And keep up your kegels.
39/40 men didn’t need prostatectomies to begin with. Do the editors differ on that point? Do they offer an apology to the thousands of men with impotence and/or incontinence thanks to an unnecessary procedure?

Jim Rayburn

Diagnosed 2011 with prostate cancer. Studied a bunch and chose radical prostatectomy (first mistake), done in Houston at Methodist Hospital by a doctor who told me there was almost no chance of incontinence or impotency. Bladder spasms in recovery room perhaps the worst experience of my life and no one ever mentioned that might occur. In third year of dealing with incontinence – tried bulking agent procedure twice, both helped but didn’t cure problem. Needing a better solution and studying options. I too find the above blog suspicious. It shouldn’t be so difficult to get honest help, and it’s a shame doctors aren’t more honest up front. If I had it to decide over again I would choose the seed treatment. Be warned if you choose the surgery, and mine was performed by the robotic equipment, supposed to be “state of the art.”

Calvin

I had surgery three years ago and still have some leakage,however the information was helpful in that it assures me that all is not lost.I will keep on trying and hope that I will soon be dry.At present I use two pads a day with very little wetting.i am hoping that in another few weeks it would go away.i use n tonic and apple cyder vinager along keegel exercise to help with the tightening of the muscle.All three are helping me to improve.

anthony christopher

I had a radical prostatectomy 11 months ago using the robotic procedure. I have 2 friends who have had the same procedure within 2 years of mine. I am 72 and if you are this old, you might as well expect to have incontinence and impotence, especially if both sides of your seminal vessels were taken out. However, if you were in good health and had no sexual problems or incontinence before surgery, you will most likely find and answer for the incontinence and possibly an answer for the impotence. With the incontinence, I find the story of the man who finally found a solution with the artificial sphincter pump to be very creditable. After 18 months, one needs to start seeking options. Before 18 months, loosing weight and having a strong kegel musscle is many times the answer.

Brian Veale

Hi Calvin
Have just had my prostate removed six weeks ago. Am not having a big leakage problem, only slightly. Am using one pad a day.I have been doing the keegel exercises. Have been reading a lot about the things apple cider can do. It seems you can use it for all sorts of things. Cleaning your teeth, as a house hold cleaner. But its the first time have read anything about it being used for something like you have said.
I would be very interested in finding out how you use it. Do you drink it straight or mix it with something. Would really like to try it out. With thanks. Brian Veale From Perth, Western Australia.

Jay Powell

I, too would like Information on the use of apple cider vinegar for post-prostate surgical incontinence? And what is meant by “weight loss?”(One should become skinny or what)? I’m only three weeks out of surgery with absolute incontinence. Thanks for advice.

Edward Apodaca Jr.

I am 59 years old and had my Robotic-prostatectomey on Sept.23,2014.I have incontinence.The leaks seem controllable at night now after three weeks, so I get up often at night to go. I am doing the kegels which I had To suggest to my doctor. Yeah, go figure he carries a 5 STAR Rating, but this condition was a suprise to me!My surgery was a success and now I have to deal with it. I know its kind of early for me to be complaining but I pray it gets better with time.

Chris Bragdon

Learned I have prostate cancer days before my 65th bday. I had the robotic prostatectomey done September 6th 2014 and I’m incontinent. Nights are OK, early morning after getting up almost OK, but by 9:30am, away wee go! During the day, if I lie down, I can hold urine but the control is not like the morning upon arising. I’m interested in the “tonic and apple cider vinegar” (drink?). Beer doesn’t seem to help! Been about 6 weeks as of this writing since the surgery. PSA done a few days ago indicated .004, from 76 before the surgery.

W. Everly

I just turned 60 in late August and had the radical prostatectomey by the DiVinci robot at the Indy VA hospital on 9/22/14. Prior to surgery, my Urologist mentioned NOTHING about incontinence. After surgery and one night in the hospital I was sent home with an internal catheter. (the surgery went well and I had no pain after three days. However there was 2 weeks of intermittent blood and blood clots in my urine that caused me some concern) The catheter was removed a week later. I was again sent home with no mention of incontinence by the Urology department and no supplies. We purchased pull-ups and pads from the local drug store. The next day I called the Urology department and asked for incontinence supplies and approx 3 weeks later I received what seemed like a life-time supply of adult pull-ups, pads, condemn catheters, leg bags, and hoses. At that moment I realized that this was going to be a long recovery. During the day I wear the external catheters and at night I wear the pull-ups and pads. I don’t leak while in bed or while sitting. When standing and gravity takes over, there is no stopping the flow. I do the Kegel exercises every day but would like more information on the juices. Forget the impotence. I was told by my doctor that I had to first be continent before I could ever achieve an erection. The Indy VA has done hundreds of these surgeries and are aware of complications. They need to be more open about important information that affect the lives of veterans.

Mike

I had my robotic prostate surgery of all dates on 14 Feb 2014 at VA San Bernardino, seemed many of us went through that like on a conveyor belt. Procedue went well and hospital stay and Kageral tharepy, but when release and to follow ups to remove cather was not advised to bring pads and other supplies for trip home. We ask but only given a uniral. Told hospital did not provide those items. Seemed follows were useless 5 min visits at $50 speciality copay for me. I do the Kagel exercise and have limited control, am self-concess about liquid intake after dinner but still get up 3-4 times at nite. Draining bladder seems to take awhile initial flow is little and have to contract to get more out. Today no erection or inertested in sex, even prior to surgery. Seemed sex drive was lost due to EDS maybe cause of enlarged prostate and cancer. Which I feel guilty of and not able to… If I can ever control the incontent then maybe there will be hope. For now wife and I are thankful for being cancer free.

John Vossos

I was diagnosed at age 69 with advanced prostate cancer. There is a back story, but in the end i was fortunate to end up getting one of the provinces leading prostate surgeons. It is 18 months since the surgery. Like other here, i am doing well and am fit and pretty nealthy at 71. I am dismayed at the incontinence that I also suffer with. It has dramatically limited what I am now preoared to do such as take hike or go on a vacation … Than god I am retired, I can’t imagine having to schlep to to bathroom five or six yimes a fpday to check or replace a pad.

I am not willing to become a ‘Borg’ of sorts and have devices installed that likely will fail at some point. My wife has been an angel through all this … My life would be not worth living without her love and care. I do all the cooking and kitchen duty … I can at least do that and take out the garbage … But living large is out of the question … From here on it will be a small quiet life. I am disappointed that this happened to me and angry that so little was mentioned about it pre op … And that there seems to be not much development of a decent treatment for such a horrid affliction.

Norman baril

From canada.. Incontinence after radical . It’s been 2 months and doing me kegals. Professor in urology, did prostate surgery. Breezed through surgery but incontinent since cathther out. Feeling very depressed feeling lost and teary eyed at times.. Feeling worthless. Left my job .no shopping no sport no motorcycle. Will not leave the house. Went shopping today but only for pads. Using 3to 4 a day. Having the feeling this is permanent .incontinence clinic was no help. ( she’d your tears in the shower and no one will ever know) I am a broken man. Better to live 4years with cancer than 10 years with incontinence. Living in the basement last 2 mos. it is this heart breaking when you lose hope.. Thanks for listening…

Rodney Jones

I just read your story and its heartbreaking. I just had my surgery on Feb 29th. I have experienced some of the same things that you have, but don’t give up. Have faith in God and he will bring you through this crisis. If you need to talk feel free to email me.

Sincerly,
Rodney Jones

Carlos Bellamy

I just had my surgery on July 14th 2016 and having the same incontinence problem. Just started the kegel exercises(1week ago) and started to see some improvement. After removing my catheter, I was using 4 to 5 pads per day and now I’m at 2 per day. Please don’t get depressed. What keeps me going is my disabled(autism) son. I was able to removed my cancerous prostate but my son remains disabled. Don’t give-up, this recovery is a decathlon race.

W Mehlhaff

I appreciate the gentlemen who are sharing their knowledge and experience with incontinence. I am a woman of 60, who has begun seeing a man who had radical surgery, and suffers from both incontinence and impotence.

I can honestly say that neither problem is a “deal breaker”, and I would say any woman who is loving and caring would not be bothered. I’m doing online research so that I know and understand all the options that might be available.

During intimate time together, I am not offended by urine leakage. Most older women also have some form of stress-incontinence from childbirth, so lifting, coughing, or sneezing is a problem for us! If this gentleman and I ever make this a permanent relationship, I think bathing together after holding and caressing each other will be a perfect bonding ritual.

So for those who are depressed or feeling worthless, please don’t think that this puts you “out of the game”.

Mike

Thank you for the encouragement. My loving wife tells me the same, at first I thought they were just to make me not feel worthless. It does take understanding and team work. God Bless You Both.

Mark Battista

I had my RP in Feb 2014 and am still incontinent and im potent. However, my Urologist advised me that the likelihood of these side effects were high and it was my choice as to what treatment I wanted to have. My situation has been further compounded in that the final pathology of my prostate was Gleeson score of 9 which required me to have adjuvant therapy (Radiation treatment and hormone treatment). My primary Urologist then referred to to another Urologist who specialises in remediating incontinence. After three consultations with him I have opted to have have the artificial sphincter procedure (which will happen in December). Although my leakage is averaging about 150 ml per day the radiation treatment makes the sling procdure seem less likely of success.

ozzie

late October, 2014 Had my prostate removed (#8 on the Gleason scale of malignancy) Its been three weeks since surgery, 2 weeks without the catheter and only one mishap due to me being overconfident ( was on one hour trip to restaurant and travel home holding my need to urinate).
At home. I go every 20 minutes to empty my bladder and have no problems other than the extended time I goof.
I believe its discipline that you people have to have to control the function of your bladder. Help yourselves by practicing.. It may help. Its been helping me during these two weeks.
Thanks and live a happy life.
BTW. I’m 70 yrs. old

Rod

Had my prostate removed 7/23/2013 at age 65 with the DiVinci robot at UC Irvine. I was going to go into a long story about my surgery and the extreme extra cost and time to go to the best surgeon etc.1200 miles from me and he does not take Medicare so I paid cash. Nothing turned out as promised…BUT I am alive and well, very depressing year and four months. I am beginning to get erections in the night now, incontinence was pretty good at about four months with Oxybutynin and its side effects. I have tried to go off of the medication and start leaking again. I have started going to the local Urologist who did my initial biopsy to have my PSA checks and asked him about trying to get off of the Oxybutynin. He looked at my chart and asked if I was still on Cardura/Doxazosin and how much. I was still on it and he said you can not be on that without a prostate and ever dry up, you need a different PB medication! I changed BP meds and stopped the Oxybutynin and am completely continent at this point. I can not change my choice to go UC Irvine, but if I could, I would have had my local Urologist do my surgery with the robot and saved a ten day 2500 mile trip and almost $8000.00 with probably the same results. How supposedly one of the best Urologists in the country, who saw a list of my medications prior to surgery didn’t catch this is unbelievable to me! I hope this helps someone else!

stever2

I was diagnosed a gleason 8 and had robotic surgery for removal of prostate Aug. 15, 2014. After 2 weeks following surgery i had the catheter removed. It has been 2.5 months since removal of the catheter. It is no where near as bad now as it was immediately following the removal of the catheter. I urinate maybe 2 times during the night. Whenever i go to stand up i relieve my self in my portable portapottie.I can go almost a minute without any leaking at all. then i have a dribble and urge to go I go to the toilet and try to drain off the rest and there is none. Bending standing twisting creates leakage and sometimes lying down feels like i am going to pee the bed is intense so i sleep in a recliner. Like ALL men i ask,…” will i ever regain TOTAL control?” The Dr. says yes, but i fear i am rather the exception. I am 65 yrs old.

Nancy

My husband has an artificial bladder sphincter.

He underwent a radical prostatectomy in 1999 at the age of 51. He had a Gleason score of 8. The cancer had spread to the muscle of his bladder. They removed part of his bladder during the prostatectomy, but all of the cancer was not removed. His PSA was undetectable for a year after surgery and then began to rise slowly. He used lots of alternative treatments including diet, supplements, yoga, meditation, etc. We were told he had no chance of surviving the cancer. Five years after surgery his PSA had slowly risen to .9. He opted to have radiation treatments to the prostate bed at that time. His PSA has been undetectable since the radiation treatments in 2004. He was not incontinent after the surgery or following the radiation treatments, but did have slight stress incontinence.

However, in 2010 he was hospitalized for a knee surgery and his urethra and bladder neck were injured due to a faulty catheter placement. It’s a long story, but a great deal of damage was done and he underwent several procedures and surgeries to remove the scar tissue. In the end he was totally incontinent. After healing from the scar removal surgeries he had an artificial sphincter installed. His experience with the artificial sphincter has been very similar to what was posted by the man who did not use his real name. My husband does have stress incontinence and some leakage but engages in almost all of his regular activities. I hope that others will consider the artificial sphincter if their incontinence is so severe that their activities are severely limited. There is a great surgeon in Houston who has done many of these surgeries. Contact me if you need more information.

My husband has read my post – am not sharing this without his okay.

Hasmukh

Nancy,

Thanks for offering to share further info. My prostate and catheter are removed and I am struggling with incontinence.

Thanks

Danette

Thank you Nancy for sharing.
My husband was diagnosed at 51 years old in April 2015, had robotic surgery and was successful. This April he went through 40 rounds of radiation and also receiving Testerone blocker injections once a month for the next 3 years. After surgery he had full bladder control, but after the radiation he is now dealing with incontinent. He voids often but if he is not near a restroom when he feels the urge, it’s too late. After readying your story , if in time it doesn’t get better I am interested in the Doctor your husband trusted in,
To all men who are dealing with these issues, I know it can be frustrating to you. Speaking for myself and as well as other woman who are either in relationships or married, this is not as important as not having you here alive with us. Woman too have bladder problems as we get older, this is something we just have to deal with. My husband and I joke and make light of our issues, I say “our” because being married for 33 years his problems are my problems. The most important thing is that he is cancer free and there is nothing we can not deal with together.

Ron

I was 51 when I was diagnosed with prostate cancer .My Gleason was a 7.according to my Dr.I caught it early.The cancer was just in a small area of my prostate, and he recommended surgery.I did some research and decided on the DiVinci (surgery July 2014). 7-10 days after a successful surgery the cathedar was removed. At first I had lost the feeling to urinate. I just would go.I used the pull-ups. I was using at least 4-5 a day.it was so depressing. I guess about 4-5 weeks passed when I began to get the urge to go again.I continued to do the kegal excersies.Now about 5 months after surgery I’m ready to just wear a pad. Now I’m waiting on my erections to return. This is not fun at all.Just wanted to share my experience. I hope it helps someone. I’ll let you know how the erections go.

mike

Hi I am 53 I had my prostate removed on November 4th this year. Due to complications after surgery I am only on my 5th day without a catheter. I am pretty dry while sitting and lying down. I started kegel exercises before the operation, I am one light pad a day, no sign of a erection yet. PS I have entered a half marathon in three months time.

Bob Wilson

OK, I know all of us have a similar experience no matter what we had done to get rid of the cancer. Getting rid of it was the highest priority for all of us. To try to make a long story shorter…in 2006 I was diagnosed with PC. After some visits to a urologist, I was scheduled for surgery, the idea of this surgery scared the sh#t out me. I’m computer/internet literate and decided to check out all types of procedures for prostate cancer removal. I came across a site about HIFU (High Intensity Focused Ultrasound), it is done in most developed countries worldwide EXCEPT in the U.S. it is not invasive and is an outpatient procedure. I had mine done in Mexico by a U.S. doctor. The procedure took care of all the cancer, but in the following weeks it became obvious that things were not good, I was developing scar tissue of the bladder neck which eventually closed the bladder neck…I had over a dozen procedures to reopen the bladder neck over a period of four years. My (very good) urologist said there wasn’t anything other than these procedures to fix it and he wouldn’t recommend any other procedures because of my tendency to develop stenosis. I went back to the Internet and discovered a doctor in Israel who had developed a stent that would hold open the bladder neck and keeping the stenosis from invading it. I had one more surgery to open the bladder neck and headed to Israel. A year later the stent was removed and the stenosis problem was gone…but now I was totally incontinent. I tried everything, just like most of you did, but nothing helped. I was determined not to have a surgery, but also wanted to do a better job at controlling the incontinence. What I have ended up using are…yes, the pads…and an incontinence clip. There are several types and all of them work to one degree or another, and I’ve tried every one of them on the market. Recently, I discovered the best one for me, and between the clip and light pads, I manage to stay mostly dry all day. Nights I use a pad that catches any “dribbles” with no clip. OK…now Erectile Dysfunction…first, I am diabetic for 47 years, ED is almost a given with diabetes, second, I was already having a bit of a problem before the prostate cancer and procedures, so, I can’t blame all of that totally on the ED. What did I do?…none of the “pills” help me, kegels, I tried the shots, but in spite of me being used to giving my self shots, I just couldn’t get used to shooting my penis to get a hard-on. OK, men, no matter what you feel about “the gay issue”, I’m gay, sex is still sex and what we all want is a nice erection to complete our job. One thing my doctor told me is, you can have a climax without a erection and without expelling anything. Something I’ve used over the years, mainly for pleasure, is a cock ring…those little jelly like things that fit tight around your penis, these things are now a necessity in my life. It takes two of them placed at the base of the penis just above the scrotum to give me a nice firm erection. OK, that’s my story…you notice I haven’t mentioned any brand names, I’m just an ordinary guy (gay maybe), been with my partner for 14 years, and I’m not saying any of my “answers” are the best for anyone, they are just my experiences. Good luck to all of you, I wish there were some real solution to all of our problems, maybe some day there will be, but for now as for me…I’m just doing what I have to do to lead a somewhat normal life.

Qlena

I am in tears after reading your story. My ex-boyfriend was diagnosed w/PC in Dec 2013 at age 52. He made an emotional decision instead of an educated decision. The urologist mislead him into thinking he would be back to normal before he knew it. He had radical prostatectomy surgery. He was sexually active prior to PC. After 11 months now, I don’t know him. In March he bought a corvette, started being a real nightmare toward me, started dating a 25 year old, started going to the gym –like gyms were about to disappear, started listening to advice of a 25 by taking testosterone supplements, eating fried fish and chicken, etc. He’s depressed, angry, frustrated, etc. Plus he has high blood pressure, ED, high cholesterol, and diabetes. He won’t go to PC Support group for fear of running into someone who might tell a small town his business.

With that said, I couldn’t take it anymore. He really cut me to the core with the 25 year old. We stopped talking, but the good in me feels this fool is so out of his mind that he hasn’t given any thought to the cancer recurring. I hope it doesn’t. I hope I will never hear its back from him because he won’t be as strong as you.

As I look at him fall foolishly, should I still give a damn?

Joe

Diagnosed in Oct 2014 at the age of 59, watchful waiting was not an option. I was slim, fit and an ideal candidate for surgery.
Two and a half weeks ago I had my prostate removed. The op went well but nerve bundle on left hand side was removed due to cancer proximity.
I’d done the Kegel exercises and stop/start peeing before the op and had good control and erections were good.
When the catheter came out two weeks later I had no control at all. The young nurse who removed the catheter told me to try and hold it and then pee in the measuring bottle. She obviously hadn’t got a clue. I tried to do the stop/start but couldn’t feel the sphincter muscle never mind control it. I was deeply shocked at this as I felt if there was some control of the sphincter muscle then I had something that I could work on but there was nothing. When I stand up my bladder empties into a pad, when I sit or lie still, not a lot happens but if I cough, sneeze or move I leak into the pad. I’m doing about five to six medium pads a day and sleeping in an adult nappy. As far a erections go, no movement or sensation in that area so far.
Before the op I’d read up on the stats and the experiences of others but reality really does bite.
Still, as everybody assures me, it’s early days.

Craig

Had nerve sparring prostatectomy 11 months ago. Practiced watchful waiting for 3 years prior to that. I will be 62 in a couple of months I had bilateral nerve sparing radical prostatectomy using DaVinci robotics. The Foley catheter was in for 11 days. After catheter removal urinary leakage was significant for close to 12 weeks wearing large pads and changing them two to three times a day. Wore the thinner pads for another 8 weeks and then stopped due to minimal leakage. I usually only leak a few drops at a time and underwear dries up on its own. I think two things helped me regain contenancy. The first was very skilled doctors at Roswell Park Cancer Institute. The second was my Kegal exercises. I read several articles for both men and women. I walked 5 -6 miles per day, I do my kegels while walking. I usually do 40 per day and hold them for 20 seconds each. During my first 8 weeks of recovery I also would do squats where I relaxed my muscles while squating and then tighten/Kegal when standing up. I would do two sets of 10 each day. Finally, I would walk up and down my basement stairs while doing kegals 10 times each day. I did this exercise program for 8 weeks while I was on work disability. I am 99% dry. Once in a while I leak a small amount. Just enough to show a small wet spot on my underwear. I should mention that after the catheter is removed, the bladder needs to be expanded back to normal. Once the catheter was removed I started practicing holding my urine longer and longer. I don’t know if my exercise program will be helpful for others but my reading led me to believe that standard kegels may not be enough to solve the contenancy problem completely. Now 11 months later I still walk each day. I try to do 20 – 30 kegals per day but do forget sometimes. I don’t think I will ever be 100% dry but my current condition doesn’t prevent me from doing anything I want to do.

Hasmukh

Great to hear a positive note. I have been looking for one. There may be others beacause if their incontinence is not problematic they won’t go on the Internet. I am determined to overcome this and will be going on my Golf course wearing an over waterproof pants if necessary. I will also come clean with fellow golfers that I have this problem. It will not surprise me if others open up with similar or same issue.

Harjinder Paaji

Great and a very useful blog for me. I am very much benefited after reading this blog. Keep sharing.

Joe

Update from 2nd Jan.
2 weeks since catheter was removed.
Doing 12 six second Kegels 4 times a day as per physios instructions. Help wife do light housework when I can.
Going for 3km walk daily wearing pad, constant drip drip while walking and pad ends up being quite wet. Same applies to trips to the shops.
Reduced fluid intake to reduce leakage.
Still incontinent except when lying down or sitting.
When I stand up, I try to hold it but invariably pee in my pad. What I am doing now is grasping my penis before I get up to prevent leakage and go to the toilet where I try to practice the stop/start exercise. When I do this, I pee like the proverbial racehorse but so far my efforts at stop/start are pretty abysmal. Having said that, I am seeing a very very small change in the flow and I will continue to work on that.

Roy

I had my prostate removed Dec.5,2014 . Everything went well with the surgery. 3 weeks later the catheter was removed. There wasn’t any leakage at first until I went pee for the first time then I never stopped leaking for about 3 hours . I went through pad after pad. Then all of a sudden i stopped leaking and wasn’t able to pee at all. I went back to my Doctor and he suggested to reinstall the catheter. This happened 2 more times. The doctor thinking it might be scar blocking the bladder neck checked and didn’t find anything. To date I still need a catheter to empty my bladder. I am still seeking treatment hoping to find a solution. In retro spec I think I made the wrong choice in having the surgery. I just have to live with it now and hope for the best.

Tom O

Had a Radical Prostatectomy Dec 15, 2014…operation was a success, catheter was absolutely awful, NOW I LEAK…doing Kegels, but not happy… I go through about 3-4 depends a day…sitting is ok, as is lying down…But when I stand up, especially at work, there goes the flow…I can only hope and pray that this will get better. I used to be able to control my bladder perfectly, and at 57, am pretty miffed that I can’t…but, my wife and I have patience, and as long as I NEVER have to deal with a catheter again, I will press on

michael

Had radical prostatectomy in October 2014 .Gleason 4+3 with possible extracapsular spread .Da Vinci Robotic procedure smooth post op course home in 3 days and catheter out day 8. 3 weeks of pelvic floor physio pre-op and have continued with exercise programme post op. I am 74 , fit and active .I like almost all the correspondents am continent at night but when active and up and about walking ,shopping ,playing sport am incontinent and use 5-6 pads a day which generally are pretty well soaked.
Very depressing and one can only hope it improves with time ,friends I have spoken to have all regained continence by 12 months . So keep positive ,lead as normal a life as possible. There are plenty a lot worse of than us …at least for most of us the cancer is cured and make no mistake dying from CA prostate is a miserable end .

Kevin

I had nerve-sparing radical robotic laparoscopic prostatectomy surgery done December 16, 2014. My best Christmas gift was the pathology report, which indicated all of the cancer cells were confined to the prostate, with none in the margins. The Foley catheter was removed nearly two weeks later. My doctor had prescribed sildenafil, the generic of Viagra, to help rebuild potency and erections. However, after about 10 days of use, I had to discontinue it because of neuralgia pain in the back sides of my thighs as side effects. My physician then prescribed a vacuum device for me, which I have yet to order from an out-of-network provider. However, I’m not sure I really need it, not to mention the $500 out-of-pocket cost. I think while I was using the Viagra, I may have already begun to rebuild the nerve areas on both sides where my prostate used to be. Am I well within my patient rights to not order the vacuum device?

My immediate concern now, nearly five weeks after surgery, is urinary incontinence, for which I wear shield pads in my underwear, which are usually good for an entire day. Sometimes after I return home from work during the evening, I find that my pad is literally soaked, and have found that my incontinence seems to vary with the weather. When it is cold and rainy, as it has been a lot of this New Year, the problem seems worse, than when it is warmer and drier. My main question to this list serve is generally how long does it take to completely recover from the incontinence, which is really more of an aggravation than anything else? I will be seeing my physician in a couple months for my first follow-up visit. It would be nice to know that I might be out of the woods by that time, but I have read it can take anywhere from two to twelve months to fully recover. And then there is the 6% of those who have prostatectomies who never fully recover.

Any words of wisdom or moral support would be appreciated.

Kevin

Joe

Update from 14Jan.
Catheter removed a month ago.
Still doing Kegels four time a day. Walking 3k each day.
At night I still wear diapers but mostly dry at night except for very minor leaks. I get up twice each night to empty my bladder and clamp my penis with my hand to avoid soaking the diapers and leaking everywhere when doing this.
Using four medium pads per day which are well soaked with a constant drip drip when moving around.
Last Tuesday morning I woke up, dry diaper, did kegels then removed diaper and swung into a sitting position on the edge of the bed without dribbling. I placed a plastic cup under my penis to catch any dribbles and stood up. I leaked about a teaspoonful but held it. Then I shuffled the ten feet distance to the toilet. I stood at the toilet then consciously pee’d into the toilet. This is the first time since the 16Dec that I have controlled my urine flow. Had my bladder been full, then I could not have held it but I’d gone to the toilet once or twice during the night. The rest of the day and the following days it was back to leaking, dripping and wet pads. I will continue to heal and I will continue to exercise and hopefully I will have some good news to report next time.

FLOYD SMITH

HOPE THIS WILL HELP SOME OF YOU AFTER READING THIS AND PLEASE EXCUSE ME FOR USING CAPITAL LETTERS ONLY BECAUSE IM THANKFUL TO GOD AND REALLY HAPPY TO TELL YOU GUYS OF MY PROGRESS IN HEALING MYSELF.ON JANUARY 9,2015 I WAS SCHEDULE TO GET OPERATED ON DUE TO PROSTATE CANCER AFTER THE OPERATION I WAS HOOKED UP TO TWO RECEIVING TUBES ONE INSERTED ON MY LEFT SIDE AND THE OTHER ONE COMING FROM MY PENIS IN WHICH I HAD TO KEEP BOTH TUBES INSERTED IN ME UNTIL JANUARY 16,2015 WHEN I REVISITED MY DOCTOR IN WHICH HE DISCONNECTED BOTH TUBES FROM ME AND PATCHED MY LEFT SIDE UP WITH NEEDLE AND SURGICAL TREAD.NOW READ ON MAN AFTER REACHING HOME I WAS DRIPPING UNCONTROLLABLY FROM MY PENIS SOAKING UP MY UNDERWEAR AND ALL MY CLOTHING I FELT REAL EMBARRASSED AND ASHAMED OF MYSELF I WAS SCARED THAT I WAS GOING TO DO THIS FOR THE REST OF MY LIFE BUT THANKS TO YOU GUYS ON THIS SITE AND MOST OF ALL GOD ALMIGHTY.I CANT EXACTLY PEN POINT THE ONE ON THIS SITE WHO SAID HE USED (APPLE CIDER) WELL I DRUNK ABOUT 4 OUNCES OF APPLE CIDER EACH DAY AND WORE A MANS DIAPER AND NOW MY FEELING FROM MY PENIS IS BACK ABOUT 90% IT STILL DRIPS SLIGHTLY BUT I CAN FEEL AND HOLD MY URINE NOW BUT THE ONLY THING NOW IS I CANT USE THE TOILET BY STANDING BUT HAVE TO USE A URINAL BECAUSE MY URINE STILL COMES OUT CROOKED BUT I HAVE FAITH MY GOD WILL HEAL THIS PROBLEM ALSO .LOOK IM FROM LOS ANGELES AND HAD MY OPERATION AT UCLA HARBOR GENERAL FROM A YOUNG DOCTOR GOD TOUCH THIS MAN TO HEAL PEOPLE I THANK HIM ALSO. TODAY IS FEBUARY 6,2015 NOT EVEN A MONTH IM 54 YEARS OLD. I HOPE MY STORY OF TRUTH WILL HELP SOME OF YOU BECAUSE GOD IS WITH U ALL.

BL

To Norman – try a penis clamp. They work, although you might have to try a few. I like the very adjustable one from ppstop dot com.
Wearing my clamp, I have a normal life, shopping, even playing musical gigs.

It’s also possible to go about one’s business wearing a condom catheter and a leg bag. I did this for a month or two, until finding the right penis clamp. If you get a kink in the drainage tube, condom blow-off can occur from a urine backup! I came close to having this happen a few times.
To put this in perspective, I discovered that pilots of small airplanes sometimes employ leg bags for long journeys. One has to adapt.
It’s about 6 yrs since my radical open prostatectomy. If standing, I drip continuously, but no leakage lying down, except a little bit from coughing or changing position. I manage during the day with a penis clamp plus a small pad held over that using a baby sock and rubber band, and this works pretty well. I do kegels in the morning, about 50-100. I think without that the tendency to leak would be worse. Coffee increases the tendency to leak, as does being tired late in the day.
At night, I wear a somewhat larger pad, but no clamp. If I go to bed very late and exhausted, I may put on some kind of absorbent briefs, as I peed the bed about twice in such a state. I like to give the penis a rest from the clamp at night.
Interestingly, in the morning, I can stand and walk about a bit before I start to leak alot again.
As far as clamps go, not too tight! Better to have a little bit of leakage and not injure the penis. This happened to me once. Just once. Not sure how it got too tight, but I was involved in an absorbing activity and ignored the pinching sensations. No permanent damage done, but had some local swelling and skin slough, and couldn’t wear the clamp for about 2 weeks.
Re vacuum pumps – these have support in the current medical literature for helping rehab erectile function. They certainly can draw blood into the penis and perhaps thereby maintain the health and patency of the chambers. I do not find the pump gets me hard enough for “intromission”. Nothing does, not even the intracavernosal injection anymore. I was not impotent before prostatectomy, but it was a declining function. Viagra worked before surgery, but not since.
Vacuum pump shouldn’t cost $500 as another poster stated. Even ones with a special safety valve (to prevent pumping up too much and causing penile injury) are under $100. Look at websites selling diabetic supplies. Cheaper penis pumps are sold everywhere on the web at sites specializing in sex paraphenalia.

mike

I had my Robotic Prostatectomy in October. After the catheter came out it was difficult to hold anything in. Wore 4 depends undergarments a day. I did this for at least the first month. But then I moved into the pads. I’m down to one a day almost 4 months out. There are days where there’s barely anything in there at the end of the day. But other days it would’ve been a disaster to be without. Activity level definitely affects the rate. If I do a lot of walking (which I understand is great exercise for getting better) or on my feet for long periods of time then I start running a bit. Late in the afternoon gets rough too. So I’m not ready to try going without yet. I feel good at the progress but wonder if this is as good as it gets. Will I be wearing pads forever? And should I toss the boxers and go with tight briefs only? Because when the Johnson is hanging loosely, it’s likely to start dripping. There needs to be some kind of underwear with built in pockets for pads to slide in, like a jock strap 🙂

I’ve been very lucky with no ED problem. Many people are uncomfortable with this, but I really think stimulation with porn helps. 3 days after the catheter was out I tested myself and not much was happening down there. But I pulled up the web and soon had my first erection. There’s nothing wrong with it even though I won’t tell anyone I do this. I think you need to keep the blood flow going and constant “exercise” down there helps it get better. Plus there is no pressure to perform with a partner. This my advice and you don’t have to try it but I see absolutely no difference in my firmness and stamina from pre-op.

Slava M.

To Floyd Smith

I bought Apple cider 5.8% Alc. Brand- Henry Hotspurs Hard Pressed for cider. Is it right one?

Joey B.

Glad to have found this site. I’ve noticed most of the comments are from guys with recent prostate surgeries. I was diagnosed with PC in 2009 at age 50. I wasn’t shocked as my dad, older brother and two uncles had it previously. I had robotic surgery in 2010. After 4 years I’m still pretty much incontinent–one pad a day as opposed to 5 or 6 in the weeks after surgery. I’ve done kegals but from what I’ve seen on this site nowhere near as much as I probably should have. I’m now considering the bulking agent (paste) procedure but need more details from my urologist. What if it works too good and I can’t pee? Holy sh*t that would suck!

Regarding erections, Viagra helps. Unfortunately my insurance doesn’t cover it; it costs $265 for 7 pills! Are they f**ling kidding or what?! They’ve got some racket going, that’s for sure. Thankfully I can achieve orgasm but it takes longer. Keep in mind we’re not kids anymore, this would probably be the case even without the surgery. Lastly, to all bloggers: try not to get depressed! Your life isn’t over, these things take time. At least we’re alive. Many guys are diagnosed when it’s too late. Be happy you’ve caught it in time!

Joe

Update from 14 Jan.
Nine weeks since op, seven weeks since catheter removed.
Well there’s good news in that my recent blood test came back with undetectable psa. On the incontinence side, no change from my report of 14 Jan. If anything, I find that when I stand up I leak a lot more. I think this may have something to do with the scaring and swelling of the bladder and the uretha healing. I’m hoping it is short term and that I will get on top of it with the exercises and time. On the ED side there is no spontaneous movement. I bought a penis pump and it was nice to see the old guy standing up again even if he is shorter and softer than before. Getting the rubber bands on without losing the vacuum is fun! I’m trying to pump it up at least three times a week just to exercise the tissue. I also used Viagra for the first time but could only get a very soft semi-erection. I can achieve orgasms but no erections. The three month milestone is coming up and I don’t think I will be one of those who achieve continence by that time.

Jim Genkos

was operated on in August 2013 and I am still incontinent. Went to three different physical therapists the first one was a wacko The second one had no idea what she was doing. The third one seemed on the right track but made me give up everything I enjoy in life. Biking canoe racing lifting weights and running, also all kegal exercises she said I was too tight!. None of this made any difference. Still going through 5 pads a day.Went to my Dr. for my year check up and he said too bad what operation would you like now! The sling or sphincter, I said neither and he could not get me out of the office fast enough. I changed Drs. and just went to the new one, not much better. He never got within ten feet of me and just said I need an artificial sphincter. He has a buddy that does them and he can get me right in. Ha Ha I wanted to know why I was incontinent and asked, They seem to roll their eyes and look like don”t you know. I asked for imaging test to check the sphincter muscle and pelvic floor muscles and they say why? It will only show the obvious. So we sit here and guess that someone damaged the nerves of the sphincter I wonder who! I have been doing kagels like crazy for two months and I am down to three pads a day, I figure if no one else cares about my incontinence I will prove them all wrong. I have several friends that are all Drs. and they say give it up and have the operation. I am not ready to give up yet. Why hasn’t any one come up with a better fix that that Rube Goldberg thinjg they call an artificial sphincter, seems that a little electronic valve in the urethra should do the trick. I guess we don’t whine enough to get progress. Thanks for letting me vent my frustrations with the medical profession

Joey B.

To Jim Genkos… your comments had me laughing. Doctors are quick to wanna operate (KA-CHING!). I’m still incontinent after 5 years tho only one pad a day. My urologist is now suggesting the ‘bulking agent’ which is placed into the urethra. I know it sucks but don’t fret. If i get the procedure I’ll be sure to report back to this site.

Joe

Update from 17th Feb.
On the incontinence side, it is difficult to say whether I am making progress or not. In the morning I try to make it to the toilet without leaking into a plastic cup which I hold under my penis. Most times I don’t and leak about four or five teaspoons of urine into the cup, at which point I am standing at the toilet. I then try to stop the flow and generally I can stop it or slow it down significantly. If my bladder is very full then it is very difficult if not impossible to stop the flow. During the morning I leak a relatively small amount but as the day goes on I get tired and the leaking increases significantly. Most days are pretty heavy but maybe every third day the leaking is noticeably less. I’m doing kegels four times a day. Previously before the op I used to focus on the pelvic floor muscles near the pubic bone with good results. After the op this did not seem to work and I now focus on the pelvic floor muscles nearer to the anus and have had a better result with this. I also allow fifteen seconds between each kegel(7 second duration) so as not to over tire the muscles. On the ED side I tried a Viagra pill today, the second one so far, and with the help of my wife managed to obtain a wonderful looking erection. It wasn’t rock hard and didn’t last long but considering that I only have one nerve bundle left, I was more than a little pleased. Unfortunately I was leaking a lot of urine at the time which spoiled an otherwise great moment. Hopefully, with time, I will continue to heal.

Joey B.

Another obviously embarrassing occurrence is when (or if) you climax and urine comes out. If you have an understanding wife/girlfriend it shouldn’t be too bad. If you see more than one girl it’s best to explain your situation beforehand; makes it a lot easier. Viagra helps with erections but climaxing is sometimes difficult to achieve which in my case is more likely due to age; I’m 56.

john francis

Nov 4th 2014 I had my surjury here in canada (not too smart when it comes to listenning to people, only hearing what suits me)
Operation seemed clear enough catheder in three days in hospital
all seemed to be going well, nov 14th removal of the catheder very excited,,,,,lay down on the bed started to remove it,,,Bang like a loud pop gun,,didnt know what it was pee poured out threw a towel over me and you can go now,,your on the road to recovery, eighteen hours later I was in emergency couldnt pee for eighteen hours the pain was awful. a new catheder was installed three days later back in emergency the catheder was blocked with blood..over the next three weeks I was back in emergency three more times, my surgen decided to scope my penis
WOW the pain!!!!”yes he said someone has ripped the stitches away from the bladder” it must have been one of the nurses that replaced the catheder ha ha ha.(shame putting the blame on the nurses) THERE IS LOTS MORE TO MY STORY BUT ITS 3am TO BE CONT,,,

Jim Genkos

I found a web site called the national association for continence. They have available for $8.50 a cassette that does a great job of walking you through a series of pelvic floor exercises both beginner and advanced.Just for men, I feel they do a better job of explaining the exercises then any physical therapy experts I have gone to.Hope this helps someone. What’s with the apple cider vinegar? Exactly what does it do? How about hard cider? Just wondering.

Elvin DeShazo

Age 66 years.
Doctor says gleason 7 and I need to have prostate removed.
Not to worry as only 1% are left incontinent (a lie).
He will use nerve sparing techniques (most nerve and some muscle tissue were damaged).
Prostate removed May 15, 2006. A few months later after healing the doctor installed a “sling”. The sling helped a great deal but no cure with incontinence. Apprx. 1 month later I sneezed and the sling broke loose. Another sling was installed Nov. 2007 and a later it too broke loose. Now with zero confidence with Urologist, I found another Urologist to “sew” the sling into my bodily tissue Oct. 2010.
No more sling breaks with coughing. Only using one pad/day which two Urologists say they now consider me to be continent (another lie). Kegel exercises have not provided any relief. Now nine (9) years incontinent and thousands of pads later my recommendation is to be very, very careful with Urologist’s recommendations as they WILL lie to you.
Get advice from multiple doctors and only use surgeons (NOT Urologists) to remove your prostate. Don’t get me wrong as I do trust doctors in general as I’ve have 7 bypass surgery, bilateral hernia repairs, cataract surgery, and etc. will 100% success. My problem with Urologists is the outright lies used to make a profit.

Joe

Update from March 3rd.
Well I’m afraid I don’t have a lot of good news.
Leaking is very heavy for about 50% of the last two weeks. Whereas previously when I stood up, I would leak a little. Now I am leaking a lot and have saturated the pad and wet my underpants on a number of occasions. I still cannot go to the toilet and take a pee. Either my bladder has already emptied itself into the pad or I don’t have control of the muscles which are used to start peeing. when I get up during the night and my bladder is full, I am beginning to be able to stop/start the flow. Hopefully this will help me to gain more control during the day. On the ED side, I tried another Viagra tab today but it wasn’t a success. However I did leak profusely for the rest of the day and my pads were soaked. Maybe I’ll one of those guys who are continent at six months…..

Joey B.

According to statistics, 3% of post prostate surgery patients experience urine leakage. Unfortunately I fell into that category. 4 years after robotic surgery I’m down to one pad a day. Personally, it’s the funky odor that irritates me more than the leakage itself, I never feel truly ‘clean’ which sucks. I’m now considering the bulking agent which urologist tells me is a ‘procedure’ as opposed to a surgery; you can return to work the following day. I read a previous post where this procedure wasn’t of much help to the blogger. If I decide to go thru with it I’m hoping that’s not the case with me.

Jim F

Had radical prostatectomy 31st of March. Experiencing some
leakage ( no surprise). I realize there is a big challenge
ahead of me. Doing the keagels hoping for the best. Sounds
like there is no cure for incontinence, only slow down maybe.
Good luck to all.

Steve S

Just had the daVinci two weeks ago. I had cancer but very low grade, so I was doing active surveillance. Over many years had BPH which I treated with Flomax. Moved to another state last fall, and my new urologist thought to check how much urine I was retaining in my bladder. The nurse thought the device was defective when it maxed out, but when a second hand held device did the same thing, they sent me to ultrasound and found I was retaining 2.2 liters in my bladder, about 20 times normal! For two months I wore a catheter until my prostatectomy to remove the prostate, which was as big as a grapefruit, and the biggest my doctor had ever seen. No wonder I was retaining urine. Right now I am going through 4-5 heavy duty pads a day, but I am counting my blessings. I don’t have to self-catherize and I didn’t get renal failure or bladder cancer as a result of the urine back up (for who knows how long). Every time I see my doctor I thank him. He says “Thank me when you’re dry and having erections”, but I just feel very happy and grateful that he discovered the urinary retention. Not doing so could have resulted in far worse problems than diapers. Most of all I thank my teacher Thich Nhat Hanh who said, when we grow older and not able to do what we once did, “it’s important to be grateful for what we have”. Easier said than done sometimes, but it was good advice for me.

Joe

Update from March 17th 2015.

It’s now been four months since my RP. On the incontinence side, I am now using 3 to 4 maximum absorbency pads per day. Having been told that I was an ideal candidate for a rp, I can only say that I am very disappointed with my lack of progress. First thing in the morning, when my bladder is full, I can stop and start my urine flow. Some mornings are better than others. During the day I can slow the flow by doing kegels at the right moment but by midday the first pad is well and truly soaked. As the day goes on and I get tired, the leaking increases. I will stick with the programme and hope improvement comes in time. On the ED side I have not had many spontaneous erections. The few I have had would not be hard enough for penetration however the fact that I have had any at all is encouraging.
I have used the penis pump to obtain usable erections and today I used Viagra for the fourth time and with the help of my wife, obtained a stuffable erection which allowed me to have my first normal orgasm. I used a cock ring, not to help maintain my erection but as a temporary penis clamp to stop me leaking on the bed, myself and my wife. The leaking was a big problem for me the last time I tried Viagra and resulted in me being unable to continue with intercourse on that occasion. Next month is important as I will be getting my next blood test and meeting with the surgeon. Hopefully I will make progress on all fronts.

matt b

I had an ‘old school’ (open cut) RP early February 2015. The operation “went well” but unfortunately I had problems with the post op drain and my right leg became swollen with fluid retention. A new drain site and a week later that issue was resolved.
During my stay in hospital (nearly 3 weeks) I had zero continence control 24/7 and was using the biggest pads they had.Towards the end of February my night time incontinence reduced and I was able to use medium pads but still suffered uncontrolled leaking during daytime.
By March 2015 I was using between 4 to 6 heavy pull ups a day although my night time was mainly dry.
I felt absolutely exhausted and fatigued until 6 weeks after the operation – then as if the clouds had parted I noticed that I felt more like my old self again – given I’m nearly 64.
In early April I was down to 2 medium pads a day and fairly continent at night and able to pass urine after waking with a quick dash to the toilet! I have also noticed I’m able to pass more urine when seated on the toilet – probably due to more bladder pressure when seated (?).
On the subject of pads and having changed numerous nappies on my infant children, I apply the same procedure to myself:
1) Rinse area well with warm water soaked in cotton balls or cotton.
2) Pat dry gently with small towel or paper towel- the latter is my preference for hygiene.
3) Apply Bepanthen type cream (an antiseptic soothing lotion) or if the area is irritated use a zinc based barrier cream.
4 )At nightime before bed I simply do a warm water rinse with cotton balls and don’t apply any lotion to give my skin a break.

Discovering this forum has given me some great insights into our collective problems and solutions – it would be fantastic if this forum got a higher ranking on the various search engines rather than those of the … well most of you will join those dots.

Bill

Reading all these blogs means I’m not alone. I’ve had RP 8 weeks ago. Very incontinent and impotent. Can’t get hold of my histopath report, thinking of getting a solicitor involved. Apparently my Gleeson of 3 plus 3 went to a 4 plus 3 after they examined the removed gland. Some evidence of capsular involvement. I was fobbed off the surgery for months as the first Gleeson was low – this is tantamount to manslaughter!
Hoping to see a continence nurse but keep getting fobbed off.

Ken butcher

After a Gleeson 7 result, had a robotic prostatectomy on May 12. Which from the histology looks optimistic.Had catheter in for 7 days which leaked badly. Have read dozens of articles on incontinence most of which seriously understate the time it is likely to take to regain continence. After two weeks, ok lying down and sitting. But after 11weeks still dribbling -using 4/5 pads a day.doing Kegels as recommended, but warned not to exceed more than 4 sets of 10 second holds and 10 1second lifts. Advised I am doing well, although it doesn’t feel like it as unable to do any real exercise ( golf)?
Latest advice is that dribbling should start to improve from 12weeks upto 24.weeks for continence to retain?
What option does one have other than to keep doing the Kegels!!
If continence doesn’t return after 6 months I will consider ” the sling”!!
London
July 2015

Tom W

When I went for an annual check up with my regular doctor back in May of 2013, she called me and told me that she had noticed my PSA level had been elevating. At that time it had reached 4.3; but it seemed like it was going up one whole point every year. So the doctor was concerned. She referred me to a Uro. I took a PSA test with them and they confirmed that it was elevating. It was going up .10 every month. So they performed a biopsy and confirmed that I had PC. Got a Gleason of 4+3. Oh, and by the way, I was diagnosed at age 56.

I took some time after that pondering over about possible treatments and wondered if I should bother with it. For a good while after that, I had put it off my mind and forgot about. Though some people had reminded me about it along the way. There was even a time when I considered just doing absolutely nothing and let myself go. But I heard that PC is a slow, horrible way to die. I felt like I didn’t want to live anyways because I have never been married, no kids, not much success with women, and not many friends.

Early this year (yea, it had been about a year-and-a-half that I started doing something about it) I was having strange feelings with urinating. The streaming was weak and a dribbled a little bit, but it was annoying. I went back to the Uro and was told that my prostate was enlarged with a tumor. So I decided to do something.

I had radical surgery. The cancer had gone to my lymph nodes. I was in hospital for three days following surgery. On the third day I was home, I had terrible ab pains. I went back in the hospital and had a complication, hematoma. I got out of hospital in three days after that. It took a about a month to have a tube taken out and a month and a week to have the catheter taken out.

And now I have just recently enrolled for Kegels. I have been seeing a Physical Therapist for it. It’s alright. Not working that much. Also, I am not crazy about the therapist. She seems to have a superficial personality and I think that she could be gay. I don’t have much against gays, but I don’t feel comfortable with lesbians when they seem to have a “I hate men” attitude. I’ll be going to her tomorrow and maybe it will be the last time to see her (I hope).

I’m new at this. I found this site by accident. With the comments on here, I’m glad I found it. I was not crazy about the article.

Allan Anderson

I had my prostate removed 7/15/2015 and the catheter removed 9 days later. I am definitely incognate. Use 2-3 pads a day and wear a diaper at night. Don’t seem to have much trouble at night and the diaper is a safety precaution. Walk 8-10 miles a week and do keigal exercises all the time. I DO NOT let this problem slow me down at all!!! I go shopping with the wife, play with the grandkids,work on my side jobs and everything I always did. This is just a little inconvenience! I bring extra pads with me when we go out and change them as necessary. My point is Don’t let this stop you from doing anything, life is too short as it is so go out and have fun!!

John W

Age 67, 2-1/2 years post robotic surgery. Slowly regaining continence (typically one pad/per day). I no longer need to carry a spare pad in my back pocket.

Before surgery I “occasionally” used ED drugs to guarantee a firm erection. Post surgery, there is very little natural erection occurring. I use the Osbon ErecAid pump, with elastic bands, to engage in intercourse. The pump/band works very well although the bands can be uncomfortable. The upside, for the pump, is a much thicker and slightly longer erection.

At the 2 year point I have had intercourse using ED drugs only (no pump or bands). I don’t recommend this if you are at all incontinent, as your ejaculate will consist of squirting urine. The bands will stop the flow of urine until you remove the bands (preferably in the shower).

The daily concern for continence is a mental drag. Better than cancer,or, having a limb amputated, but still disappointing. The vacuum pump works but does not allow for sexual spontaneity. An understanding wife/partner is extremely helpful in all cases.

Barrie Marshall

Hi, I had my prostate removed about five years ago, it left me with incontinence and erectile problems, I am 75 so the erectile problem I can live with, my incontinence did get better but I still have it, I leak and I use just one padded underwear every day, I am fortunate that I wake up with urges through the night, my biggest problem is that I am a musician, I play clarinet and saxophone, when I do gigs I have to wear plastic knickers over my pads because I leak drastically, but I can live with this because I’m upright and breathing, without modern surgery I wouldn’t be, I know this is not going to help anybody but I thought I would just put my little bit in.
Just for the sake of interest last week I started using Braggs Apple Cider Vinegar just to try and improve my general health, one of its effects apparently is to help with incontinence, perhaps it won’t help men who have had their prostate removed, perhaps it will help a little.

Thomas

Just less than 2 weeks post radical prostatectomy. Have major incontinence issues myself but am optimistic about resolving them. Try this link for some answers to many of the questions I am seeing above and to help some of you better understand what is causing your incontinence.

drcatalona.com/quest/quest_spring03_2.htm

Hope it helps. It did for me.

tony nicholson

In June 1989 I had a radical prostatectomy that was a complete failure. Since then I have endured a hellish life of tubes and pads and all sorts of nonsense designed by people who do not have the slightest idea what it is to be totally incontinent. An accountant with one
of the big corps asked me if incontinentcy was something to do with international jet travel.. “No” I said. ” It is to do with the unlimited flowing of one’s pee.” He backed away hastily and still is none the wiser. One item I bought in the early nineties was a very expensive device to wear on my penis. Very large and very uncomfortable and of course very expensive. Of course it did not work and I phoned the designer who lived in Southern California and asked about his product he was responsible for. “Oh” he said
“I meant that to be used for airline pilots and long haul truckers.” Well I have been trucking with my problem for many years and there does not appear to be a solution and if one does suddenly appear I am sure the company behind it will be looking only for the dough ray me and not the interests of people who are flowing freely.

Doug McNeill

Thank you all for sharing your thoughts and experiences. I am a 73 year old man diagnosed with prostate cancer. After almost two years of watchful waiting it appears that I need to move to the next step – surgery of some sort. I have been concerned about post-surgery issues and this dialogue is helping me get a grip on possibilities and LOTS OF QUESTIONS to ask the doc. I am grateful for your comments.

Emir

Women’s health chanegs with age. So the need for good health and chanegs, but the same basic health must be maintained.The time for the weekly or monthly check-ups show your willingness to stay healthy. As I said, women are easily prone to health problems, you should go for regular check-ups to be informed about their bodies and the state. Women must regularly for tests such as mammograms, bone density, blood pressure, cholesterol screening, cancer screening

Lowell H

Had radical robotic prostatectomy Oct 5, 2015. I’m 64 and
was in good health physically, working, active, doing things.
The doctors just insisted that this procedure just had to be done right away. My advice is DO NOT do this to yourself. The after effects with the leakage is unbearable. There is no
help for you and the chaffing that occurs along with the constant dripping will totally ruin your life. I can’t work or go places or do things any more. Life is over. Their kegal exercises are a joke. I wish I would have taken a chance with the cancer. At least I could be a man not a vegetable.

Ron B

I am so full of regret there isn’t a word for how I feel. I’m 65 and had the DaVinci robotic prostatectomy in May. During the pre surgery talks with the surgeon I incontinence was downplayed a lot compared to what I’m now going through. I was lead to believe I would only leak while coughing, or heavy lifting. It will be 6 months next week and I go through 4 to 5 pads a day, and for get sex in my condition. I just finished 8 weeks of Bio-Feed back with a physical therapist and doing proper Kegal exercises. I’m being told my pelvic floor muscle is not relaxing, well I don’t know how to relax it any more than it is. From this site I see a lot of men are very disappointed with life after prostate removal, like me. I will give it a year this coming May, but after that I will consider one of the additional surgical options on this page as I can’t live my life (what Life?) like this. I feel like starting a support group to advise men DO NOT have a prostatectomy, live with the slow growing cancer

Peter

I thought I’d share my recent experience with you all, and hope to give you some hope and courage.
I had RP on October 29 2015. Like most of you, once the catheter was removed I leaked, especially the first few few days. I had done kegel exercises with a physical therapist before my operation, but they were of no use during those first few days. I was dry at night, probably because there’s a lot less pressure on the bladder when you’re lying down, but I have to get up at least once sometimes twice a night to pee (something i never did before the RP).

My surgeon did warn me of incontinence and lack of firm erections, but I think he should have explained more that banal actions (such as standing up)constitute an effort when you’re in this condition. I’m now in the habit of putting into practice the kegel exercises i learned and they’ve been a great help. I do not wear any pads or protective pants as I want to get back to as much a normal life as possible. Yeah, the pee sometimes comes out beyond my control but I’m quite sure that in the next few weeks this will become something of the past. I intend to go back to work beginning of December, my aim is to be dry during the day before that time.
As for sex, for the moment I haven’t been too interested in that aspect. Luckily I have a very understanding wife. I’m sure that with the help of my surgeon (who is also a sex adviser) we will find a solution. I’m not going to panic, I’m just taking things as they come, and I’m grateful to be alive.

By the way, I’m 59 years old

declan

Had RP in 2012 at a private clinic 200 miles from my home .Ope was no problem and was home after 3 days [WAS JUST AFTER RETIRING}
3 years later and i am using 1 pad per day + i take 2 by 20 mg yentreve .i have just completed 37 sessions of external beam radition as my PSA had increased from 0.017 to 0.080. Still on 1 pad sometimes can go most of the day with only a very small leakage most often then i am walking .Go to the gym every day just the bike and the cross trainer ,this helps i feel .Still would like to know if there is and permanent solution out there
Declan
ps the surgeon calls me every 3 months to have a chat and take my 100 euro i am finished with him its just a waste of time and money .I feel back up care very poor

Tom W

To (@) Lowell H & Ron B; hi, my name is Tom, and I had posted on August 10th. Everything is still the same for me since I posted. I have tried the Kegels and felt like it didn’t work very well. And I still have the problems with incontinence, frequent urination (sometimes), and erection disorder.

I read that you both were saying that you wished that you did not have the surgery. Well, I feel very much the same way. I didn’t want to have it before I did. But I felt like I got talked into it. I was told that incontinence would go away and my erection would come back to almost normal. I figured that – hey, it’s not so bad! But boy, I found out that there were things that I was not told about and wished that I knew.

The part I got talked into the most was that I was told that many guys who refused treatment ended up dying a slow miserable death. That’s not what I wanted. If it were a deal that I would just die peacefully, then I would have turned down the treatment.

Well, unfortunately, it’s a damned if you don’t/damned if you do proposition. I really feel for you two (and the rest on here) because I’m going through the same frustrations.

KB

Had RP Jun 2015, still going through impotence and then incontinence problems. Good results from blood work. Tough on intimacy part with the Mrs. 3 pads a day. 56. Happy to be above ground

jjwird

My physical therapist game me a number of exercises to strengthen the core muscles, to go along with Kegels. Just started, so no sense of how well this will work, but therapist is highly experienced, and at a major research hospital. Perhaps this may help someone.

Greg

I had a my prostate removed on December 9th and the catheter removed on December 17th, very happy day. Hope I never have one again. I wore the diaper home from the office and wore a small pad, that was given to me, the next day. Since then I have not needed a pad and hope I never do. Reading all of these stories is scary. It is easy to see how it could happen. I can hold my bladder for about 3-4 hours and get up 2x during the night to go. I have been doing the keigle exercises since two weeks before surgery. My Dr. had me meet with a physical therapist to make sure I was doing the right amount and correctly. She has me doing 3 sets of 10 and holding for 10 seconds. She also has me doing 3 sets of 10 and holding for 2 seconds. I have done them religiously.
My Dr. has me taking Cialis every other night to attack the erection. I have been able to get an erection with the help of my very supportive wife but haven’t gone beyond that yet. We all go into this saying that the most important thing is the cancer removal and just hope for the best with the side effects. It is bad enough to hear that we have cancer but to have complications after really would suck. Hope this helps someone. I know it helped me to read all of the stories. I am 63 and in otherwise good health.

John

I had a da Vinci assisted RP on Nov 17th 2015. Out of hospital next morning. My scrotum was black after procedure – but normal after 2 weeks.
Catheter removed on Nov 25th. I’m 59.
Cancer was a Gleeson 7 (3+4) with prostate about twice normal size.
PSA was 15 in August and then 18 three weeks after. I took apricot kernals (about 10 a day) and after 3 months (just before RP op) my PSA was 19 … my GP laughed because he thought it didn’t work – I say it did, if you compare the readings!

Bad news with the RP pathology was that a “positive margin” of cancer remained – it grew against the rectum wall and could not be totally cut away.

I will see the Urologist Jan. 27 2016, to discuss if I’ll need radiation or hormone therapy and to also monitor a PSA test done a few days before.

I only leak slightly (now and then) and I only use one light protective pad daily. I only do kegel exercises once or twice a day.

On the intimacy / ED side, well, I have a supportive wife but there’s no “lead in the pencil” to talk about – yet.

I had two specialist opinions before my RP.
1st quack said if I do nothing, I have 2 to 5 years to live …. the 2nd said “he was a bit harsh” – it’s more like 5 to 10 years.

I’m praying that “positive margin” is going to be a fizzer.

Apparently 10 to 15% of RPs have “positive margins” remaining.

Hope my story helps.

DJ

Does anyone have information about any repair procedures for incontinence during sex, when the original surgery was about 30 years ago?

warren

I am in Houston,Tx and looking for the best surgeon I can find for my surgery. Nancy offered advice, and if you read this Nancy, please respond.

David Cheney

David
One year ago Jan. 2015 I underwent the Robotic surgery. It was successful with clean margins. My Gleason score going in was 7. PSA was only 4.1. Doctors comment after surgery was that everything went as well as we had hoped. However, the Prostrate was large and that it would take longer to regain continuance. My PSA is now undetectable.Incontinence is not any fun but it is better than just letting cancer run it’s course. This is what my father-in-law did. We attended his funeral 3 days after Easter. Nine months after surgery I was still using four Depends a day (they work very well buy the smallest size you can fit into). My PT instructed me to start using the MPT Maximum Pelvic Trainer. I have used this for four months. My Pelvic Floor muscles have greatly improved. I’m now down to 2-3 Depends a day. I feel this is still improving. My PT is now suggesting electrical stimulation to cause contractions and further train the pelvic floor muscles. It may take two years to get to my best level of continuance. The support I received from the Omaha Urology Center and my PT has been wonderful. My family did not want to watch me die from cancer when I had every opportunity of beating it. Don’t get discouraged things do improve. In talking to others about what they had done. One person had artificial sphincter surgery. He said it was great and wishes he had done it sooner.I’m still using 5mg of Cialis daily. I try to get this from my doctors office. They have been very helpful with this.I’m very active person as a full time farmer. I still enjoy hunting , fishing and all types of water sports. Best of luck remember other’s have it worse than we do.

donald o funderud

DOF. had RP on 3 feb 2010. I’m having all the problems all the posts before me have stated. My doc said his success ratio was 95% and I ate it up. not bad odds. what I read and saw I believed it, op one day out the next, cath 5 days and then do anything I wanted to do(true & did). Not much mention of kegels, incontinence really never got better, and impotence was there. 64 at the time and now 70. did get the pump and it works. went back for scheduled cks and I was a piece of meat to the doc, horrible visits. last visit I asked about the sling, 1st words out of his mouth, success ratio was 95%. never went back.I now go to the VA hospital & is great, psa is .01.(civ doc) I feel he rushed the op as he had 2 more scheduled that day. was late getting to me, 1st op in the morning. that’s history, now looking for other methods of stopping the incontinence. sitting, laying down, no issue, but standing, walking, exercising, etc got the problem. 2-3 depends pads a day and one during the night. muscles get tired in the afternoon. just wish the doctors will tell you up front, this is what is going to happen to you. some of my friends have had the seeds, proton, etc and they are struggling and 2 have passed having other than RP. In theory if its done right I’d do it again, I would get the most experienced physcian that I could find. although not everyone can do the RP, I was a perfect patient for this type. I’ve found this blog interesting and useful for some new devices/methods. My new doc is great at the VA and my urologist there and I happy with him for a new beginning. thanks, for reading

Elio Sonsini

I have read some of the comments from men who remained incontinent after having surgery for prostate cancer.
I am one of them and I am trying to get used to that inconvenience.
I was operated in 2010 and since than I have been incontinent, wearing 5 or 6 pads every day. I tried kegels and other therapies but i still am facing the same problem. I don’t like to have another surgery since I don’t feel secure of the result.
I wish to find out a natural remedy if anybody experienced in curing incontinence. I am not desperate but this problem keeps me everyday concentrated on taking care of it since every time I change a pad i have to wash myself and when I am out it is not comfortable best regards to everybody with affection Elio

Charles Besozzi

Had prostate removed in 2010. My thoughts as follows; lasting incontience minimized in my
surgeon’s sales pitch. Live with all the problems of managing this problem. Have spoken with
AUS surgeon who is so very sure he can fix my problem. I don’t believe him. This brings me
no pleasure to report this.

Jean B

I am 53 years old male, African. Had RP at Mayo Clinic, Rochester, MN on 5 October 2015. All went smoothly – catheter removed after Day 8 – as well as my recovery. Was using 3-4 pads a day at the beginning, but suddenly on 20 December 2015 went down to 1 pad as I was dry the whole day. Before that, I had stopped using any pad at night, probably 2 to 3 weeks after surgery. Was doing Kegel exercises only.

I found quite useful and very insightful the site suggested by Thomas on 12 September 2015: drcatalona.com/quest/quest_spring03_2.htm

I also add the exercises suggested by Dr Catalona and I am happy and satisfied. Now, I am back to my normal life and back in the field in Africa and using 1 pad a day with minor inconvenience.

I saw the doctor on 13 January and he was happy about my progress. So far, PSA below 0.10, will repeat the test every 3 months as recommended.

Please keep positive. For your own happiness, be grateful to be alive. Also, try not to spread the wave of pessimism around, especially with your beloved because they are more affected than us. Still one cannot ignore his disappointments, but see it as a glass that is half full, half empty. Focus on the part that is half full and think about those whose glass has run dry with no prospects of ever filling it up again. Be happy.

Note: at present, I have made any progress with the use of Cialis 5mg and I finished the 3 months cure recommended by my doctor. It will focus on this next, I hope to be as lucky.

Gary

I’ve recently been diagnosed with prostate cancer @54 yrs old, Dad Aldo had it and is still alive and well. My Doctor(s) have recommended surgery, does anyone know of a good surgeon/urologist to perform it in Austin, Tx?

chuk

I just had a robotic surgery at the St David’s north Austin centre judtcgot my catera removed
Shoot me an email, perhaps i can answer any questions you might have.

Peter

Hi, i just had my rp on Jan 19 th. Catheter out 10 days later. Surgery went as well as could be expected. Although if i had to do it again i would try & go with the robot procedure as long as the surgeon was well skilled in operating it. I think the recovery time would be way quicker. I’m still pretty sore. Unfortunately there were no machines in my area.
I do have some bladder control but leak when coughing, getting up etc. just started my cialis pills so we’ll see what happens in the ed department. I still feel quite positive and will do any exercises required to have bladder control.
Im happy i went with the surgery route, the thought of radioactive seeds cooking in my prostate was not appealing to me. Although a friend of mine who is about 15 years older had it done and is pleased with his results.
I find it amazing how fast a person’s life can change, in a matter of a few months I went from a virol man that loved sex and had no performance issues to wondering if I’ll ever get it up, what’s an orgasm going to feel like, never see my semen again and discussing panty liners with my wife.
Although i will still enjoy hanging with my kids, participate in my favourite sports and grow old with my wife. I’m 57, was Gleason 7, 4+3 and had a PSA of 5.

Jim Porter

I had my RP in June of 2008 with the surgeon using laphroscopic (spelling) surgery. He used the nerve sparing technique. I had a Gleason score of 3+4=7 but did have extracapular extension. Clean margins and no cancer in the lymph nodes. Almost 8 years out my PSA is “undetectable” which is good. But – like most who post here I was almost totally incontinent for several weeks after the cath was pulled. Then it began to get better and, finally, after a year or so I didn’t even need a pad. In spite of “nerve sparing surgery” there were no signs of life “down there”. My surgeon told me that in the process of surgery the nerves are “handled” and they shut down for a while. In my case it was 2 years before I was able to get an erection. But then when I did – guess what – there was very little left to erect! I understand that it’s called penis shrinkage and NOBODY told me about it! I lost half of what I used to have which is a bitter pill to swallow! And now the incontinence has come back and seems to be getting worse. As some have posted here I am glad to be cancer-free and alive but I just don’t believe these “rosy scenario” statistics the urologists show you before the operation.

Oscar

I was diagnosed with aggressive prostate cancer in December of 2015, Gleason score of 9. After consulting with several specialists I opted for nerve sparing robotic surgery (radical prostatectomy. I was operated on in mid February of 2016.

My surgeon told me I would have some urinary incontinence for a time but that most likely it would get a lot better within a couple of months. She also said impotence would not be an issue. She laid out a schedule of Kegel exercises and volley ball squeezing exercises to help strengthen my muscles. I’ve been doing them religiously for two weeks before the surgery and ever since the catheter was removed (three weeks ago).

I’m coming up on 1 month since my surgery and the urinary incontinence is getting better. I’m down to using only two or three heavy duty pads per day. When the catheter was removed I was using 7 or 8 per day. Each day I go longer and longer between bathroom visits. Sometimes there is a bad day with more pads. If I’m sitting or lying down, there is no issue at all. I’m confident the incontinence will self resolve with time and by sticking to the exercise schedule she gave me.

I work at a “standing work station” and that seems to trigger more leakage. Gravity seems to be a factor.

It is my understanding that several factors affect success in regaining urinary continence: Your age at the time of surgery (I’m 62), the size of your prostate (mine was still small), how active and healthy (BMI) you were before your surgery, how well you stick to your exercise schedule, and the skill of the surgeon. I am normal weight and before my surgery ran 2 miles every day, up and down a hill or went kayaking for 3 hours. I’m back to doing the hill, but right now I walk it. Kayaking won’t start up for a couple more weeks.

The pathology report indicated that the cancer was all contained within the prostate. No invasion of the capsule or lymph nodes, clear margins, so I’m hopeful the cancer is gone. Radiation is an option if any cancer remained behind.

I’m in the “wait and see” period. My first follow up PSA test is in a couple of months.

Email me if you’d like to chat.

Lowell H

This note is for Ron B from Nov 1, 2015; If you have started that support group advising people to NOT have that RP surgery, SIGN ME UP!!! This is not living. You cannot be active in any way. Your life is over anyway. The worse part is the downplayed information from your surgeon about the leakage. This is horrible. DO NOT let them rush you into this useless procedure. The constant dripping and chaffing especially in warm weather during any activity is unbearable,{even just pushing a mower}. You life as a man and husband and father IS OVER. DON’T DO THIS TO YOURSELF!!!!

Steve S

I had RP surgery 2.5 months ago. My incontinence since the catheter was removed a week after surgery has remained the same. When I use heavy pads I can use up to seven a day. I have been using external catheters or condoms for two weeks now. These work quire well but I saw where Dr. Patrick Walsh recommended in his book against them in regaining continence. This contrasts with cancer urology surgeon Dr. John McHugh who indicates in his book The Decision (about surgery vs. radiation) that he used these condoms for three months and then was continent. Walsh doesn’t indicate in his book statistical evidence that external condoms delay or prevent eventual continence. I wonder if his opinion is based on any factual evidence or just his gut feeling. I would love to know if anyone reading this blog has experience with the external catheters and if they helped or hindered a return to continence (or even near-continence).

roger

It has been four weeks for me since pc surgery every thing is good but lm still working on the inconstinice. Truth be told It is less but I am still hopeful.

KB

56, been 10 months since Radical prostectomy, gotten a little better with incontinence, down to one pull up in the day and one pad at night. Impotence is a problem, thank God for an understanding wife. Cialis hasn’t brought good results. PSA count has been great the last two times. Taking another test in two weeks. All in all it’s good to be alive

Ray

63 in Nov when I had robotically-assisted laparoscopic radical prostatectomy… Foley catheter about 16 days post-op. Continence returning slowly: about 1 month with Depends (form-fitting, not the big plastic diaper ones), another 3 months with Depends extra-absorbent pads, now only using Depends light-absorbency shields (6 months since surgery)… just a very slight drip or two during day or at night… return to continence right on schedule with what surgeon and all the literature I read told me.

But research into impotency issue tells me it’s time to take action. Surgeon and his lit indicated potency would return between 1 and 2-year post-op, but what I don’t remember hearing was that there can be the long-term side-effects if you just wait for it to return naturally. My research onto post-op Erectile Dysfunction and “penile rehabilitation” indicates that if a penis remains in a prolonged flaccid state, permanent results affecting size and strength of an erection can occur… that I need to get the Viagra prescription my surgeon wrote for me at the time of surgery filled and begin to get circulation back in the penis so the tissue doesn’t wither but remains healthy and able to return to a spontaneous full-sized erection if/when natural potency returns.

Thought you might benefit from this insight on getting started on the rehabilitation phase of post-op.

Stephen Pomerance

I was diagnosed with PC 4 weeks ago gleeson score 3+4 and was advised by my urologist to have my prostate removed. I then went to see another urologist who said I was only 30% 4 and 70% 3 and my PSA was 2.75 and felt a surveillance was best with 3 monthly blood tests. I am now waiting to see a Proffesor Emberton who has written papers on how 85% of men have had their prostate removed unnessassarly.

I would advise all to take a second or third opinion

Tom F

At age 61, I’m almost three years out from Davinci RP. PSA had been very slowly increasing over the years, but then jumped from about 4 to about 6 in three months so it was off to the urologist. Gleason was 3+3, 11 of 12 samples showed abnormal cells. Urologist/surgeon did warn that I had ~10% chance of incontinence but said it in a tone like it wouldn’t happen to me. He had about 200 Davinci RPs under his belt.

It was pretty weird when I peed out a couple pieces of suture material in the days after the catheter came out. Seems like sloppy work to this engineer but what do I know, I’m not a surgeon.

Was still leaking a lot after about 3 months and started with PT. Very weird having her finger up there. She said that gave here a better idea what my muscles were doing than the biofeedback probe (which we also used). Thankfully her finger was thin. Unfortunately a year of the PT didn’t seem to help much if at all.

Now I typically use 3 pads a day. My typical work day is quite sedentary and I’d say 90% – 95% of my urine gets into the toilet. But on the weekend when I’m mowing, trimming, painting, etc., then I’d say 90% of the urine ends up in the pads and I’ll use maybe 5 or 6 that day. I favor the Depends shields and have a subscription at Amazon to get two packages (52/pkg) per month. I apply Desitin after every shower because there’s no way I want that ugly diaper rash again! It only takes a very thin layer.

Before RP, my firmness was gradually needing more help (Cialis) with each passing year. Now I have no firmness at all, just a little bit of filling with blood. I experimented with and researched different pumps and feel that the Vacurect clearly stands out from the rest. I bought mine out-of-pocket for %195 at anactivelife.com. Sure am glad I can still have an orgasm, firm or not.

I thank everyone for sharing their stories; I found them very helpful. I’m inspired to try some things now. Since I can stop the stream, I guess I don’t have too much scarring and I intend to start doing regular Kegels again. Although, if it’s strong enough to stop mid-stream, why do I still leak? Also going to look into the incontinence clamps for the times I’m active.

I’m thankful my PSA is still 0.00 but now I’m quite wary about getting a sling or artificial sphincter.

Thanks to the Gorman brothers for supporting this site.

DC

I’m 68, and after seeing my PSA levels increase gradually over the past 5 years, my GP suggested an appt with a urologist. After 3 appts with urologist he advised a prostate biopsy which indicated cancer cells on left side, and rated 7 on Gleason scale. Urologist advised me to have RP. I opted for laproscopic procedure which was done Apr 11/16. Surgery and recovery went well. Back to work 3 days post surgery. (Office work) Catheter was in for 18 days. Bladder control is perfect at night, reasonable in AM and not so good as the day wears on. Mental stress is a huge factor in bladder control. 2 months post surgery I’m using average 5 pads per day, some days more some less. Control is improving slowly. I had follow up appt with urologist June 01/16. Pathology report indicated clear margins however indicated very aggressive cancer, 9 on Gleason scale. Had blood work done shortly after, PSA level less than .1 I have 0 sexual function now but urologist prescribed Cialis. I’m quite confident that both control and sexual function will return eventually. I have no regrets having had this surgery. I feel awesome and am back to regular activities. RP beats the hell out of dying a slow miserable death. Every day I thank God that I’m still alive and well.

Marcia Alexander

Last year was the worst year of my husband’s life! 5 surgeries-3 inpatient, 2 out patient, in one year all because of prostate surgery and leakage. The surgery went fine except for leakage. In an effort to stop the leakage, his doctor inserted a sling that did nothing and tried 2 bulking that also did nothing. The sling was very painful for him and after serveral months of enduring the pain and dibilitating leakage, he changed doctors and found a surgeron that would remove the sling and insert the artifical sphincter. The relief was immediate. The surgeron got 98% of the sling out. The leakage stopped and he is now able to resume his normal activities. He is very happy with the sphincter and would recommend it highly. Note–2 doctors that we consulted with just wanted to cut the sling, not remove it. We found a surgeon who specialize in this procedure.

Tony

RALP on 6/28 at J Hopkins in Baltimore. Out of catheter today 7/7. Feel PCP let me down. Looking back, annual PSA 2.4 3.2 then 4.4. The 3.2 felt enlargement. No Uro referral. Only when he felt a lump this year did he refer. Gleason 7, 7/12 biopsy cores, believed surgery was best option. Did get several opinions from different facilities. Started Kegel several weeks prior. Negative margins. 1st day out, difficult to work the same pubic muscle. Optimistic incontinence will improve. As for ED have scrip for 100mg Viagra to try 1st. No problems whatsoever prior. Only 1 nerve spared. I’m athletic 58 yr old, still running 8 miles weekly

Bea

As a woman married to a man with the same problems I can sympathize. Whatever happens I am glad my husband is alive. We chose surgery and I’m glad we did. The other problems are small and can be managed or ignored. Please don’t feel you are worthless. Life is sweet although there are bitter elements also. You are important and there is always hope.

Joe

Update from April 16th, 2015
Joe

Hi all, Just an update on how things are going for me.
Surgery on 16Dec1914. Still completely incontinent i.e. my bladder is always empty when I go to the toilet. I’m dry at night but I get up to pee 3 to 4 times each night to make sure I don’t leak and I wear a cotton mitten on my penis to catch leaks. I can get a 75-80% erection which with a rubber constriction ring allows me to maintain a stuffable erection. I now use pads and a penile clamp to control the leaking. The clamp would be great but I have had traces of blood in my urine on two occasion which I think are due to the clamp abraiding the urethra. I am currently investigating slings and the AUS both of which have their own risks. Bad news is that my PSA is stating to rise above negligible for the last two tests. 0.003 four months ago and 0.006 one month ago. My specialist says it is negligible at the moment but I can’t help worrying. Any one else have this sort of recurrence?
Thanks to all for sharing.

Glenn

I saw a urologist in January of this year, had Green Laser TURP procedure in March and six months later, I’m totally incontinent. I had a secondary procedure in May to clean up debris from the first, but it hasn’t help the incontinence. I’ve done PT with two therapists, including electrical stimulation via an anal probe, and I’m still doing the latter. I change heavy duty Depends/pads 5-6 times per day, and often during the night. I have voluntary control of my stream, but that’s all.

I started down this path because of BPH causing me to be up 3-5 times per night, and the promise of sleeping better was tempting, and the risks seemed to be low and minor! What a mistake, as I’m miserable and depressed all day, and still get up 3 or 4 times during the night, sometimes to wash and change. And I’m a back sleeper. Apparently the inability to hold in urine during the day (unless sitting or lying down for 3-4 hours) has decreased my bladder capacity. My urologist and therapists keep saying it’s way to soon to look at artificial sphincter surgery, but won’t tell me how long I’m expected to keep struggling.

I was active as a biker/hiker, healthy eater. It seems that 90% of my quality of life is down the drain because I got talked into having TURP surgery, thinking I was at risk because of some test score they administered on the first visit. I had never had acute retention, just a slow stream.

Roland Rousselle

Roland
Age 69

I don’t typically comment on blogs, but I have read several and the info was helpful and decided to comment. Diagnosed with PC in Nov 2015, bone scan was negative, CT scans also indicated negative for cancer. Did the usual research on the internet and decided on the DaVinci system. My urologist’s partner was skilled in this procedure and had done several (Methodist Hospital in Houston, Tx). Both urologists had given me the facts prior to the surgery ref incontinence; 5% don’t have a problem, 5% never regain continence and 90% regain continence within a year or so.
Had the radical prostatectomy (DaVinci) Jan 7, 2016. They removed the nerve bundles, lymph nodes, seminal vessicles and prostate. Biopsies indicated all were cancerous. Catheter remained in for a week. Had PT with probe about 2 months after surgery. Been doing Kegals regularly since prior to surgery. Results so far have not been great:
6 maximum sized pads/ day for the first 6 months, gradually improved to using 1 or 2 pads at night and 2 or 3 during the day. I am very active and in fairly good shape.
ED is a problem, can’t get an erection with meds, but using a pump works. Not the best situation, but it could be a lot worse.
The urologist wants to do hormone therapy and then do radiation after a the incontinence improves. I have rejected hormone therapy and probably won’t do radiation unless I am totally continent. Post op PSA has been 0.01 / 0.02 at 3 and 6 month check ups.
I have tried using a Cunningham penile clamp, it is uncomfortable but it does help with the leakage. Doesn’t work when I am really physically active but works pretty good otherwise.
I asked about the artificial sphincter and the sling; Doc said that I was not a candidate for the sling (had to be down to one pad a day), and told me that I needed to wait a minimum of 12 months from surgery prior to considering the AU.
All in all, I can’t complain about the doctors: they informed me of the risks and are very positive about regaining continence. I doubt if I ever will have normal erections without the pump, but it could be a lot worse. Still alive and positive. Hope this helps someone out there; if you need to talk — shoot me an email.

Kevin C

I am 74 and got a 4+3 PSA a couple of times so got referred to a Urologist who suggested a radical robotic prostatectomy. The biopsy revealed 2 out of 10 cores had a Gleeson of 4+3 and therefor a radical procedure was advised. I had the da Vinci RP in January and 7 months later am down to 1 pad in 24 hours. These are the 400mg pads which I only ever allow to get about 100mg. I weight them before going to bed each night. Mostly am leaking about 30 – 6-mg. I don’t leak when I cough or sneeze but I am concerned that uncontrollable leakage occurs during the later part of the day. I keep silly hours sometimes only getting to bed around 3 or 4 in the morning, so my night goes from around that time to about 10am with the odd lie in until 11. I may have benefitted from an earlier start in the PT area because I was lead to believe that it would all come right on its own. That information appears to conflict with the PT I went to see who said that I would leak until I did the exercises enough to end the incontinence. Interesting to see that some of us have taken more than ten years and still suffer. All in all I am glad that I had the procedure done and my wife isn’t that concerned about the ED side of it. I have been trying to get ‘interested’ again and I’m relatively hopeful that that can happen. I tried viagra four times but they didn’t seem to make a difference and I had only tried Cialis once, with no great promise, so that may be the route I take in a few months. I do seem to be able to get an erection with a little visual stimulation so here’s hoping! Shame I’m not twenty years younger so I could use that a bit more aggressively! I am relieved to hear that results can take as long as my surgeon suggested, just sorry I’m not one of the lucky ones! Thanks for sharing your stories with this blog, it has helped reduce my despondency. Keep the faith!

ken stamps

If you have extreme incontinence look up eFax male
incontinence system. It is the cats meow. I am 76 and
was going through about 10 pads a day. I now use one pad
with little to none leakage after 12 wks. As much as I
was leaking, that leaves me astounded. I did a lot of
kiegals and I think that helps, but maybe I got lucky
with my Loma Linda V.A. surgeon, or he was able to
leave a good portion of my sphinter muscle. Who knows.
Good luck and hang in there.

Andrew Cook

I was diagnosed earlier this year with pc at the age of 47. Gleason 7 (3+4). I had an open Rp early July which was a success, with clear margins around the prostate. The catheter was in situ for 10 days. Upon removal I was Ove come by the incontinence. I’d been well warned by my surgeon that it would occur but that it would most likely resolve in time. For 3 weeks I was completely paralysed with fear as I had no control. But I continued the exercises as directed.all of a sudden around the 3 week mark I realised I was able to stand with a full bladder and relax the pelvic floor without leaking. Within another couple of weeks I was able to walk to the toilet without leaking. Now at the 10 week post op stage I’m pad free at home and when going out for short trips. Still wear a pad when going out to a social event etc, and leak a lot when going for a walk or jog, but that will come. I think the trick with my recovery is that I have stayed off work and done nothing but rest apart from doing exercises and walking and jogging (only when surgeon told me I could), and that I had an exceptionally gifted surgeon. It will be a few months until I’m completely continent but I will get there. Please everyone, don’t give up hope

CB

Thank you all for sharing. Hubby to have surgery in one month. He is 65. The surgeon really pushed the whole ED rehab but prob downplayed the incontinence issue. Looking for words of wisdom and hope. Thanks for your stories

Andrew cook

CB….make sure he does is pre surgery pelvic floor work, and once the catheter is removed do the exercises religiously. My first 3 weeks after the catheter was removed were terrible with severe incontinence, but I persevered and spent 8 weeks completely resting, spending 10 hours a day lying on the couch. I was fortunate to be able to take the time to do this and now at 13 weeks post opn tomorrow, I’m pad free, other than when I’m going for a run. That will come in time. I lose a few drops through out the day but certainly nothing that requires a pad. And I had an open prostatectomy so whether it’s open or robotic makes no difference

Mike

I’m 74 years old and 6 months from a prostatectomy . Have found a decent remedy for wet depends. I use Acticuf for the hot tub and they work great . $24.99 for 10 from Amazon. Then buy
a Wiesner incontinence Clamp for activity like golf . $39.99 from Amazon . No more wet diapers !!
Take a leak after 9 holes , clamp it back on and your good to go !! Totally reusable.
Believe me we’re on our own after surgery. Zero help ! They tell you to do Kegals, but good luck
with that ….I had to find everything myself. And the surgeon is laughing all the way to the
bank $$$$

JL

I just turned 56 a week ago, but a mere day later I had the DaVinci RaRP. My test showed PSA was 14.6, Gleason 7 on all 12 samples.
Left hospital 24 hrs after surgery, catheter removed 4 days later. The first 24 hrs without it was some roller coaster ride. As I was walking near home, I felt my bladder emptying helplessly without any prior notice, soaking the protection and my pants in the process. A day later, I discovered I had some control after all, by means of tucking in my lower ab (and keeping it tucked in). So inside 24 hrs, my morale went from good to devastated to “hang in there.”
I am going easy on Kegel’s for now as my surgery is 8 days old only and I don’t like feeling the stitches pulling.
ED is the least of my concern right now, I want to concentrate on strengthening those pelvic floor muscles, and loosing the beer belly in the process.
Keep the hope!

Ionel

IS
I am Romanian, 59 years old, and had an open RP on 11th of November in Germany.
Tumor classification: pT2c, Gleason 7a, Confined in the prostate.
I came back at home on 20th (horrible travel).
No leak staying in bed, including the night time, but incontinent walking and climbing the stairs.
Kegel exercises: not yet started (surgeon recommendation: 12 days after removing the catheter).

I would like to ask if anyone can provide a feedback of using:
– Maximum Pelvic Trainer
– Biofeedback therapy

I wish all of you to keep positive and to get better, even the recovery rate seems to be low.

George

I am 71 and had a Gleason of 9 and prostate was removed 5 weeks ago. PSA levels are now ok. Incontinence is at 1 or 2 pads/day and one diaper at night. Was doing Kegel before and I continue several times a day.
Will meet with my surgeon next week and have a couple of issues /questions with him and for this Forum.
My penis is now shorter and in searching the internet I see this is not uncommon although none of you guys have mentioned it.
Ticked off that the surgeon never mentioned this possibility.
Before my operation I used Staxyn for sexual help as Viagra did nothing for me.Will see about a return to sexual activity? after meeting with the surgeon.

Jonny Brokenheart

I had robotic radical prostatectomy 6 weeks ago. Early on urinated every time I stood up. Urinary leakage is definitely improving. It is now minimal. A drop now and then, especially passing gas. Sex? I haven’t crossed that bridge yet. At 70, what can I expect ?
Knowing that my cancer is gone makes it worth this inconvenience. Life is always a struggle.

gary cory

hi my name is gary had robotic surgery in march 2016 gleason 7 severe incontinence still 6 to 7 pads a day just gon back to work hgv driver and leaking all the time ok when sat or laying down looks like need aus but got to wait for 12 months from my opp so should be march 2017 got to stay possitve because I am alive and only 56 years old so hang in there

Mark W.

I am 63 and 6 months post robotic surgery.
I was made aware before the survery about the battle with urinary incontinence. I have been fairly successful in overcoming the worse of incontinence with a little further to go. I am down fo using 1 of the tbin shields every 24 hours for dribbles and the occasional stress oops when doing certain things. I work out in the weight room 3 days a week and play golf every other day.
I contribute my progress to my wife, family and prayer partners and doing kiegels regularly.
No one can do this without help.
When it comes to impotence, cialis and vacum pump have been my friend.
My urologist claims I am ahead of the curve on beating both issues of incontinence and impotency. I thank my wife, my friends and God for moving me through this.

robert whiston

i AM A 78 YEAR OLD CANADIAN MALE POSTRATE REMOVAL IN 2004,FOR MANY YEARS I HAD SMALL AMOUNTS OF URINE LEAKAGE BUT NOW IT IS INCREASING TO THE POINT WHERE I NOW USE SEVERAL PADS A DAY I AM NOW THINKING OF HAVING A PUMP PUT IN TO CONTROL THIS PROBLEM. MY WIFE IS VERY SUPPORTIVE AND OF WHATEVER I DECIDE TO DO. WHAT IS YOUR THINKING ON THIS PROCEDURE AT MY AGE. I AM IN VERY GOOD HEALTH,DANCE EVERY WEEKEND, TRAVEL AND HAVE MANY FRIENDS

Cal

I was diagnosed with PC at age 48. Had prostatectomy removal during Christmas holiday in 2016. Coming up on one year now. PSA is still zero. Both nerve bundles and seminal vesicles removed. Erections are soft and not effective for sex with my wife. I leak urine when attempting the effort. Still wearing pads every day and resorting back to foley catheter during the day quite often in order to maintain my professional career. At this age, I’ve got more on the line to maintain family income than wish for continence and erections. Sad, but the cancer appears to be gone.

Robert Robinson

Had radical 12 years ago. Incontinent ever since but potency was spared. Strongly considering the artificial sphincter surgery at age 67.

Robert Robinson

I haven’t read all the posts but I’m 12 years post and have a lot of info based on experience. My radical p was at age 55 via DaVinci robot. My elite surgeon voiced surprise that I was experiencing incontinence and he was not helpful once the surgery was completed. I had to adjust my profession to allow changing Depends a few times per day. Minimal problem sitting or lying but standing, walking, hiking means going through 3-5 per day. I wear cargo pants with the side pockets to carry a spare Depends just in case. I have experienced an equal balance of pluses and minuses. I do have erectile function without pills but I continue to have problems with stress incontinence. Stress can be as minor as clearing my throat.
Pluses:
1. I’m a lousy sleeper and the need to get up at night to urinate significantly exacerbated my insomnia. Now I sleep through the night with no urge and not much leakage.
2.I now consider masturbation an important fitness exercise to maintain blood flow and erectile function. Though sex with my wife always gets me up, I don’t tend to get up as easily by just thinking. Therefore I masturbate with a vibrator. Interestingly, orgasms this way are more intense than I have ever experienced. The penis is not as enlarged which concentrates the sensation on a smaller area and when semi hard, more tissue vibrates. I think it may be somewhat more like a female orgasm in that it can go on a long time and there is not the pause between ejaculations men normally experience (because there is no ejaculate to load) More on that later. The vibrator need to be the right frequency and it works through Depends but some other brands are too thick. But seriously intense orgasms.
3. Another major plus of course is that my PSA score has remained undetectable and i don’t worry about CA and don’t have to go through any more biopsies which I hated. That’s really the bottom line after all.
4. Sex with my wife is better than ever. Though I lost a little size after the surgery, we are both so appreciative we can still enjoy sex, it is all the better. Plus I’m still learning sexual pleasure is a lifelong learning process and it’s all about pleasing your partner. Which is great fun with a responsive partner.

Minuses:
1. What a pain that the side effects of this surgery are the most personal issues a man can face and talk about with others, like work colleagues. Breast CA is easy by comparison.
2. Its difficult to feel confident in dressy clothes especially if in a situation where you may be standing/walking a lot.
3. Sex is by appointment only since spontaneous sex is out of the question because I need to shower beforehand.
4. This is a little weird but when I have an orgasm, urine squirts out even when erect. I used condoms for awhile but long ago we gave up on that. Now a little urine is leaked during sex but my wife has never had any problems related to it. It is sterile after all.
5. I spend several hundred dollars a year on Depends. And packing them for a trip gets old.
6. Water sports are only possible in large lakes which is very limiting. Can’t scuba dive unless willing to deal with changing out of depends and back in when out of the water.

So the reason I got on this site is because I am ready to try the artificial sphincter. Really tired of messing with pull ups but I do dread the surgery.

Swis Cana

My prostate is described as hardening by my doctor – recommending removal with open surgery. I live in a tropical climate, no artificial air cooling in place. I sweat a lot and therefore don’t need to get up during the night . Urine flow is variably difficult. Tamsulosin~ is the regular medication taken. No cancer diagnosed. Two hernia nets are in place. Reading the above reports leads me to the decision to not have surgery as long as possible. I am single, 78, without dependents. I might live another 30 years, at least I want to see a real alien before I go. And – I run around in shorts all day – just imagine a plastic pipe leading down my leg and a decorated with a transparent urine collector …. .

Jim

I had my robotic surgery done October 21 2016 .I started out with 3 pads a day then went right to using only one. It’s been 3 months and still leaking. I have read so many articles that it’s all confusing. As what I now understand the first 3 months are when most of the healing occurs then the next months is when the leaking should stop. I also have been doing kegels each day and really not to sure if they help. I have almost stopped leaking as I walk . I like everyone else is looking for a successful outcome. I did see that there was a clinical trial conducted in the UK a few a bit more the half the patients had non sign after the procedure. It has to do with injecting so enzyme that is harvested from deep in the ocean.it is poisons once exposed to light. They inject it in the prostate and then hit it with laser light. Side effects are very minimal and no sign of erectile dysfunction or incontenence occurs. If I only knew about this earlier . Make sure you do research prior to committing to a treatment. I was afraid so I had it removed but the side effects are something you will have to deal with until your body returns to somewhat normal HOPEFULLY.

Paul

Paul – 67 Years old – Prostatectomy October 2013 at age 63.

This is my story which may be a little lengthy but hopefully will help someone as I felt I was the lone ranger in this battle for the past 3 years before starting to read these testimonies which I am very thankful to everyone for.
In mid January 2013 I went for my usual yearly checkup with an internist I have been seeing for years. I have always been in perfect health so it was just a routine thing. I walk and jog about 3 miles every morning for years and take some classes at the gym about 2 times per week.
When the doctor performed the routine prostate exam he said he detected an abnormality but was not concerned since my PSA was not rising and asked me to return in May. I was not concerned either (or maybe didn’t want to think about it).
When I went back to him 5 months later he examined me again and stated that the growth hasn’t gotten larger. I flipped out since he never mentioned a growth before. He again said we will keep an eye on it and scheduled another appointment with him for 4 months since he felt the PSA was not on the rise. I don’t know what was on his mind but I insisted he refer me to a specialist as I felt I should have been to one in January if I had known about the growth.
Needless to say I have never returned to this doctor.
He received all the reports that we will discuss later since he was listed as my personal doctor and never once called me or had his staff call me. What a piece of work!!!!

Saw the specialist in June and he scheduled a biopsy for July and then a follow-up appointment 3 weeks later. (wish I was referred back in January when I should have been)
I had a biopsy performed in July of 2013. My next appointment for the results was scheduled for 3 weeks later.
Since I had not heard anything until the appointment I assumed that all was ok so I almost fell through the floor when I was told by the urologist it was cancer (they knew 5 days after I had the biopsy-2 1/2 weeks earlier). What a joke. I guarantee if it was their personal biopsy or their family they would of wanted to know immediately. It makes me sick to think of it and very angry.
He gave me 2 choices either radiation or robotic radical surgery and gave me a booklet explaining the procedures and after effects etc. He couldn’t and wouldn’t give me an opinion or even explain the fine points to me. He just gave me a booklet to read to base my opinion on.
In the meantime I scheduled to meet with 2 radiologists to discuss that treatment. They felt it was the right path without the consideration that the cancer could possibly become more aggressive. (lets not forget that the radiation was about 4X more expensive than the surgery).
I was confused without any good direction from the surgeon who should of laid out a better scenario and make me feel comfortable.

I then decided to do some serious research for some of the top urologists in the country and the top institutions. I had been getting the 50 and over bulletin (Now scientific American) from Johns Hopkins for years.
Scheduled a second opinion at Johns Hopkins in Baltimore which were supposed to be tops in this area.
The staff were beyond great and scheduled me in with this great dedicated self confident young top surgeon Lets call him TJ who was also highly acclaimed for cancers of the bladder. There was another top surgeon there that someone had referred me to we will call him ES who is now at Northwestern in Chicago. I needed all my tests and I hand carried my test results and had the slides sent.
I flew there from south Florida in September and had an appointment with him. Before he came into the exam room I saw he was reviewing my case with ES.
Immediately when I met him I felt very comfortable with his knowledge and total attention he paid to me and my issues without having an assistant present. TJ informed me that having the robotic surgery was not the way to go since I had had a prior hernia operation with mesh. (Interesting that the doctors in Florida didn’t pick it up or didn’t care.- it was all very visible on my test results. I guess I would then be a statistic if there were complications).

TJ was very cut and dry which is what I was looking for. I needed direction from a professional. I trusted him and his knowledge. I wasn’t looking for a friend I needed a top notch professional for help.
I told TJ that I was confused between radiation and the radical procedure due to the side effects.
He looked me straight in the eye and said “Your one of the healthiest to come in here. I would advise you to have the surgery and we can schedule it as soon as possible. Do you want to live 10 years or 30. This is what you are going to do – You are going to have the surgery and you should be fine you can fly home 2 days later.
He explained the surgery and how many he has done and that at Johns Hopkins. I finally felt at ease.
This was now the middle of September and I told him I would make my decision within a few days where I will have it done (Florida or Baltimore) and what the procedure if I was to have him do it.
He told me to email him personally and he would get the ball rolling. (I never emailed a doctor personally before).
I also told him that I would prefer the operation after the Holidays. No he wanted me to do it immediately. He insisted that If I was going this route it should be done as soon as possible and that was his professional opinion.
I made my decision to have him do the job on the plane home and emailed him the next day. (I think I really made it when he examined me but I needed to meet a Hopkins radiologist who agreed with the surgeon.
I had the radical prostatectomy October 12 on a Saturday morning YES SATURDAY. Just think about it as it is hard to get an appointment with a doctor after 3 on a Friday these days or at least in Florida. These are dedicated doctors. What Champions.

Was discharged on Monday and flew home on Wednesday. Had the CATH removed 7 days later by a urologist in my area – a sharp young doctor from Chicago (Not the original one who had done the biopsy for obvious reasons)

Received a call from my surgeon TJ at 8:30 AM a week after the operation informing me that the pathology report revealed good news and bad news.
The cancer was extremely aggressive but did not spread and as he put it we got it just in time and luckily we didn’t wait.
If I would have had the radiation treatment which takes time to work – it may of spread further before it would take effect.

I was never worried or depressed from the moment I had my first appointment at Hopkins. I think having EJ as my surgeon totally made me put my complete trust in him. Of course he was confident. Why wouldn’t he be he knows exactly what he is doing. Also lets not forget the staff that put this all together from the office to the woman that checked me in that morning for surgery. What a institution.

If it wasn’t for his determination to push me into having the surgery I probably wouldn’t be here now. I feel he saved my life and restored my confidence in the medical profession.
I am happy to be alive. I feel he was An Angel sent from God.
Sometimes I do wonder if they realize how important they are to the world.

All my PSA’s (every 3 months) have been OK. For the past 31/2 years. Even though after 2 years they advised me to check it every 6 months; I feel better with the 3 months.

I have done a tremendous amount of research and take a load of nutritionals ie: boron, Lycopene, Fish oil etc along with nutritional nutra-bullet shake in the morning (Blueberries, strawberry, apple, protein powder, flax seed and chia seeds. Whenever I read some article I just get on the bandwagon. It makes me mentally feel that I am doing my best to help myself beat this. I never felt better.

Now for the incontinence issue:
When the cath was taken out I had no control at all which I was unprepared for. And probably used 5 pads per day. (Walmart assurance brand is the best for absorbancy and Kirkland brand wipes are the best to beat any possible rash)
I just rolled with it and learned the Kegal exercises and did them religiously every day. It had gotten much better as the months went on but had serious incontinence problems for the first 2 years but never gave up. I really tried to rise above the problem and went back to work full time after 2 weeks at home and always carried a supply and would use the bathroom about 4 times a day. BIG DEAL. Most people do that anyway. No one ever knew I had a problem.

After 3 years I still needed 2 per day. As the day went on later and later it became a problem. Never sitting or lying down thankfully. I always did my exercises and jogging early morning which works well.

Miraculously after over 3 years about 3 months ago the problem stopped and I am dry which what I was told would never happen. So there is hope for everyone out there.
But I must say if that did not happen I was able to adjust as everyone should. It is just a different way of living and you really don’t have to discuss it with anyone. Carry one in your back pocket in a small plastic bag.

We are so lucky to live in an age where there are these products around to make our lives easier.

Life is so wonderful a gift to be given a second chance and anyone on this blog that says that their life is ruined and advise anyone not to have the surgery should be ashamed of themselves and maybe they weren’t happy with life before the cancer.

Men should just seek out the proper care even if you have to travel. (we think nothing of getting on a plane to visit friends or take a vacation but for our health very few make the trip—what a mistake I would of make if I hadn’t gone to Johns Hopkins or was lucky to have the great doctor/surgeon I was given)
Just think of all those who wish they could have a second chance at life with just a little inconvenience.

I tried these 31/2 years to look at the cup half full and believe you me I was never a cup half full person before this.

As you get older things happen to all of us.

I have a best friend that has been battling all types of heart issues for years. She never complains about not being able to climb stairs or the quality of her life she takes it well and doesn’t feel her life is ruined.

I have a very close friend in New York that has had a terrible time for the past 7 years with Lymphoma. He has been in horrific pain many times and has had many bad effect from chemo which he will have to deal with for the rest of his life. He has a great attitude and happy to live with a great fighter attitude. He doing OK now and never said his life is ruined.

I have another friend in New York who has bladder cancer and had to have it removed and is now forced to have a ostomy bag for urine. He is not complaining just happy to be helped.

Just think of that and compare it to what we are going through. Look at it as a different way of living. It is just an inconvenience.
Hopefully I may of helped someone see things differently as I have been helped by others on this blog.
As far as it goes for now I am doing fine and will handle the bumps in the road as they come. Having a good doctor that you have confidence in is very important. The incompetence and arrogance of those I have encountered here disgust me . But then again its up to us especially with the internet to do our own research and find a good Doctor like I have been blessed with.
I hope the best for all of you out there Paul

Robin Holmed

I agree entirely with what you said. I am one and a half years after surgery and still leaking but you have given me hope that it will stop eventually. Thank you.

Joe

Update from 16 Aug 2016
Joe
I note that a later post has been deleted, its a pity because it prevents other suffers from following my full story and maybe benefitting from my experience. I had the AMS800 implanted on the 17Jan 2017. The surgery went well however one of the stitches behind the scrotum(the most awkward and unhygienic place) became infected and I am now on an antibiotic for that and it seems to be working. The scrotum was black and blue and overall the skin of the scrotum was sore to touch, the skin at the back of the scrotum is still sore but improving each day. The wound on my abdomen was fine. The device will be activated on 1st March. Fingers crossed all will go well and I will be able to go from complete incontinence to controlling when I want to pee again.

NDM

Diagnosed with Stage 1 prostate cancer and decided to go with surgery.
PSA 2014: over 6
PSA 2015: Over 4
PSA 2016: Over 6
Biopsy November 2016:
1. PROSTATE, RIGHT APEX (BIOPSY): PROSTATIC ADENOCARCINOMA, GLEASON
SCORE 3+3=6 (GRADE GROUP 1) INVOLVING 50% OF TWO OF TWO CORES.

2. PROSTATE, RIGHT MID (BIOPSY): PROSTATIC ADENOCARCINOMA, GLEASON SCORE
3+3=6 (GRADE GROUP 1) INVOLVING TWO OF TWO CORES, 80% AND 20%.

3. PROSTATE, RIGHT BASE (BIOPSY): PROSTATIC ADENOCARCINOMA, GLEASON SCORE
3+3=6 (GRADE GROUP 1) INVOLVING
TWO OF TWO CORES, 20% AND 90%.

4. PROSTATE, LEFT APEX (BIOPSY): BENIGN PROSTATIC TISSUE.

5. PROSTATE, LEFT MID (BIOPSY): BENIGN PROSTATIC TISSUE.

6. PROSTATE, LEFT BASE (BIOPSY): PROSTATIC ADENOCARCINOMA, GLEASON SCORE
3+3=6 (GRADE GROUP 1) INVOLVING 40% OF ONE (1) CORE.

PSA After 3 months of Surgery: <0.1 ng/mL (PSA, free)

I had robot-assisted laparoscopic radical prostatectomy in end of November 2016. It went absolutely ok. First couple of weeks inconsistency was horrible. After two weeks of surgery i used 8/10 pads a day. After 3 months of surgery I am using now 2 pads a day. Urine leakage is very little.I don’t leak when I cough or sneeze but still using 2 pads while standing or walking. Sitting and lying ok. The problem I have now after walking 2 miles blood (coffee color) with uringe which is normal and it will go away as doctor told me.
Impotence: Still have issue with it. Taking 100 mg viagra.
Since my so sweet and loyal wife is a doctor she told that it would take at least one year to recover from incontinence and impotence.
No worries please work hard, every thing will be fine with the time.You can have good life without sex even tough if it takes time to recover. The only thing you need a good and supportive person.

Andrew

ALthough I have not had prostate surgery I had a car accident that left me with no bowel or bladder control and ED. I wear adult briefs 24.7 and the situation is not going to heal. I use 5-7 expensive adult briefs in medium every day. I also wear plastic pants always – sometimes two pairs. I used to mess in public and have to change in public stall, but I am not wearing a coloplast fecal tampon and it works perfectly. Over that is an adult brief When I pull the tampon out, a deficate shortly thereafter – always in my diaper.Wearing these pads is very shameful and obviously my parents know that when I go to the bathroom it’s for a diaper check or change. I carry supplies with me. I also wear the brief to the gym and biking. I don’t go in the pool because I will mess from the temperature change.

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