Learning the ropes after radical prostatectomy

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Hello. I am Larry. I had a radical prostatectomy almost 4 weeks ago after discovering most of my prostate was cancerous. I'm fortunate that after the surgery, my margins were negative (at least the margins they checked). It was not nerve-sparing because the nerves were involved in the cancer.

Dealing with the constant incontinence is tough. I don't pee when lying down or sitting, so I guess I'm better off than some. But if I stand, the finger is out of the dike, so to speak, and I'm going through briefs and pads like there is no tomorrow. I don't even want to ask if they are biodegradable.

I started kegels a couple weeks before surgery, but could not restart them till yesterday due to complications of the surgery (severe pain, UTI, and pelvic abscesses). The most difficult thing to me is that my perineal area hurts to put even tiny pressure on, and most pads and all briefs have some lump that goes right in that painful area.

I discovered products that would make the incontinence easier, namely clamps and cuffs to block the flow, but then I learned that if you use those, your muscles will not learn to hold the urine themselves, so I'm limited just to absorbables. I can't wait till this is all a distant memory, if that ever happens. I don't know, besides doing kegels and avoiding alcohol and caffeine, what might be helpful, like should I squeeze my pelvic floor muscles when standing up, not that it currently does me any good. I'll be looking on these boards for tips.

 

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It gets better. I was about like you at the same amount of time from my surgery date. I start d seeing improvement at about six weeks but was still discouraged. At about twelve weeks I had made a lot of improvement. I am now about 5 and a half months from surgery and just risked the first day at home without a pad. Had a little leakage when on the four wheeler and when helping my son wax his truck but it’s all good.

Hang in there. Get exercise and do the kegels. Oh yeah the pain gets better too. I went back to work at about five weeks and was in a lot of pain when standing for more than just a few minutes. But that went away pretty fast.

I never tried anything but pads. Was using a bunch at first but am at one in 24 hours now.

Sorry for the disorganized post but this is not easy from a phone.

 

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Maliolani/Alh63:

I am about 7 weeks out from my radical prostatectomy. I too am dealing with what appears to be a semi-constant flow of urine, especially when I am active during the day. At night, I have been fortunate, and there is no leakage at all, and sometimes I can even sleep through the entire night.

I have been doing Kegels each day and seeing a physical therapist weekly. She has been providing me a Kegel exercise routine and increasing and changing the Kegel routines weekly.

There have been a couple of days, the last week or so, that I have felt like a normal human being with very little leakage. My physical therapist explains that there will be more of these good days and I need to continue to do Kegels, and be patient.

I continue to be hopeful.

All the Best to You Both,
Nick

 

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Hi Larry, Ditto on all of the above. I am 9 months post and can travel with just a shield unless my wife stays inside the Store too long. I can hold it sitting for a long time, but standing up can set off the alarms real quick if I do that. I found Prosta Genix pills to be a HUGE help to me especially early on. Taking 3 a day, allowed me to avoid soaked pads and discomfort, and to give me some lead time before my own nerves provided warning signals to head for the head. Get the ingredient list on line, and show them to your doctor.

 

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Lots of guys recommend lots of walking. That seemed to help me as well. I also recommend weighing pads, and keeping daily totals. That is especially helpful when you’re a little further along than you are now. There are times when you feel like you’re making no progress at all, but the daily totals tell you otherwise.

 

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Welcome to the club Larry. I'm 6 months out and doing well. The only thing I would add is exercise to strengthen you core - planks etc

 

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All of the above is good! I would second the planks, I started them at about 3 weeks. My surgery was robotic. After I was fully cleared for activity I added light crunches. I had learned my leakage was almost 100% stress induced, just swinging a putter on the practice green and the slight twisting. The combination of the planks, crunches, kagels (still daily at 6 months out) and I am good. I only wear a shield in dress clothes, I call it social security.

One other tip, keep a log or journal, it makes it much easier to track progress.

 

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Hello, 2 years after RP. They found stage 3 cancer left lymph nodes but took one nerve bundle. Dealt with 6 months UTI’s and sever pain.
After all this time 3-4 pads per day, I walk 3-5 miles on trais which help. Bottom line everyone is different and you will discover where you will wind up. I fired 2 urologist drs. Finally got a good one. The bad news my psa is increasing. Hope the best for you.

 

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Hi All,

This is very helpful to hear everyone’s various situations, time since surgery, exercises that are helping, etc. One of the factors that probably has a lot to do with progress or lack thereof is age and to compare apples to apples it would be helpful to know guy’s ages. I am 66 and it will be 12 months on May 29 that I had a robot assisted nerve-sparing prostatectomy.

After talking with a family friend that had the same surgery, it helped me to know what to expect and eased much of my anxiety before surgery. He told me that he was able to get an erection within the week after surgery and returned to work within a month, only wearing disposal pads in his briefs. I know this is a forum on incontinence, not on erectile dysfunction, but I mention both because they are usually consequences of a prostatectomy. A year post-surgery I am still not able to get an erection. A lot of my incontinence has resolved, although, as I will explain in the next paragraphs, some stubbornly persists. Back to my original point regarding age as a factor. The family friend I spoke with was 55 when he had his prostatectomy. The fact he was ten years younger was significant considering our respective times in life. We all know there are exceptional human beings that defy the norms, but suffice it to say that an older body just takes longer to heal itself. So, was it wrong for me to assume that my convalescence would be similar to my 55 year old friend? Not really, who doesn’t want to assume the best? But in reality, I think my progress to date is probably more in line with other “60 somethings.”

The first couple months post-surgery I had to wear the super absorbent adult diapers to keep from wetting the bed. Fast forward to now, a year later and I can even drink water right before going to bed and I will be awakened by the urge to urinate with no problem wetting the bed. During waking hours I still use an absorbent pad in my briefs. Interestingly, during the day I am able to control a major urge to urinate from a full bladder for 5-10 minutes and typically with very little to no leaking.

The following is what is making me crazy lately. Sometimes, on a daily basis I have multiple spontaneous squirting events that may or may not be associated with a full bladder and they can soak the pad. Sometimes I can “squirt” shortly after emptying my bladder. As good as my control seems to be, I have no control over these “squirts.” I’m thinking it could have something to do with the pelvic floor muscles fatiguing from me being upright all day, as the “squirting” tends to happen towards day’s end. Anybody else having/had a similar experience? These “squirting events” have been bothersome and make me feel like I should be beyond this point by now. I walk daily and climb multiple stairs in the high-rise I live in. More kegels? What’s working for you? Any thoughts?

Take care,
Jeff

 

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I'm not convinced that age at time of surgery plays much of a factor. People heal differently and are at different levels of health regardless of age. Surgeons have different skill levels. Not all surgeries are nerve sparing (mine was not) because there may be cancer in the nerves. I read about people who claim to be "fine" a week after surgery (which I find hard to believe), and others who are years out and still have issues.

I never had an issue of leaking at night, even immediately after surgery. I guess I should count my blessings. I do have the situation you discuss of certain events causing me suddenly to leak a substantial amount of urine. It happens to me multiple times daily. My pelvic floor physical therapist urges me to keep doing kegels and ALWAYS to be sure to contract the pelvic floor muscles, whenever possible, before anything that might cause a leak, such as standing up, changing posture, sneezing, coughing, blowing my nose, anything that generates adrenalin and therefore tense muscles. Doing this may have some effect towards minimizing the leakage, at least in theory.

I am 65. Before the surgery, my pelvic floor physical therapist said I had unusually strong pelvic floor muscle contractions.

 

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Hi,

Check out this link to a study demonstrating a correlation between age and incontinence/potency resolving:

The effect of age on functional outcomes after radical prostatectomy - PubMed

Older age has a significant adverse effect on recovery of continence and potency. Although functional outcomes in elderly patients and especially in patients aged 75 years or older are still good, they should be educated about the increased risk of incontinence and impotence after RP.

pubmed.ncbi.nlm.nih.gov

I will have to continue working on my pelvic floor muscles, it is reassuring to know someone else has had similar experiences to mine.

Thank you,
Jeff

 

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Hi group. I'm 55 and had RP about 3 weeks ago. I can hold a full bladder but the small little squirts I cannot control at all. They just run right through. Does any one else have the same experience and what did you do to help. I am using 2 adult diapers a day. At night I wake up if I need to urinate.

 

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I have the same problem, Chris1968, and I haven't found much help. I don't have those squirts while lying or sitting. Whenever I stand up, I prepare by contracting my pelvic floor muscles as much as possible, but I cannot hold it for long. I have found that if I stand up only part way to a hunched over, bent knee position, I don't have a leak, at least for long enough for me to get to a toilet. But if I am walking around standing up straight, those leaks will come with no announcement and nothing I can do to stop them.

I am about 5 weeks out. Till now, I have had a LOT of trouble wearing pads or pull-up briefs that have padding that extends between the legs. This is because of a lot of pain in the perineal area recovering from the surgery. Because I was avoiding those larger pads, I had a lot of "accidents" and needed to change clothes. Now that I'm recovering a bit and have less pain there, I am moving towards pads that extend into the perineal area to absorb more leakage.

I also found early on that I could completely avoid leaks by using the penis clamps that are sold on amazon and elsewhere. But then I discovered some urologist's prostatectomy discharge instructions online, in which he said do NOT wear penis clamps or condom catheters because they will prevent your muscles from building up to stop your incontinence.

 

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@maliolani I can understand the Urologist not wanting you to use a penis clamp for several reasons but I don't understand why there would be a problem with a condom catheter? It seems with a condom catheter that you could still attempt to hold urine using the external bladder sphincter and/or pelvic floor muscles.

 

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I'm guessing the idea was that the condom catheter allows you to just "let go" and not care, which is probably what most people would do, even though it doesn't stop you from exercising control if you want.

 

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I can understand your frustration, but wow just 3 weeks no expert but I think you need to give your body more time to adjust. I am 9 months post, only use a pad for extreme waits for an available rest room. I DO take 3 Prosta Genix tablets a day. This product has helped me both before, and after my radical and I am 75. I can sit an drink a lot of fluid but If I get up I have to have a rest room in sight. The prosta genix allows me the time to make it.

 

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ProstaGenix describes itself as a prostate supplement. I wonder why it would be helpful to someone who is post-prostatectomy and has no prostate?

 

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Maliolani:

You ask a good question about Prostate Genix.

I would interested in the answer.

Nick

 

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Me to. Do you have a link to this medication? I would like to ask my Doctor about it.

 

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www.prostagenix.com Since it is all natural, I don't call it medication. I would like to know if it helps you. I swear by it now.