Hello, I'm new to all this so forgive me if I ramble on. I had robotic prostrate surgery 5 weeks ago. My caferter was taken out 3 weeks ago. I have a follow up appointment to see the consultant/ surgern in 3 weeks time which will be exactly 8 weeks since the surgery to place.
At the moment I am finding it difficult to deal with the side affects from the surgery. The incontence is difficult, I am still wearing a pad each day. I have now managed to become dry of a night time which is good but I still wear have leakage in the day time, this varies. Will this improve over time? I usallay just use one pad during the 24 hrs. Put a new one on when I go to bed & because Iv become dry of a night time that same pad does for the rest of the day until I change it again before I go to bed. I could't manage without the pad in the day time, if I sneeze, couch or lean forward when sitting or pass wind I can feel the leakage taking place. It's depressing I'm hoping this will improve.
Secondly I cannot achieve any erections Iv tried but nothing. Both these things are getting me down. Can anyone give any advice on these matters. Also I don't know what the real outcome of this cancer is regarding the prostrate that they removed as it was being sent of to be analysed under the microscope which I believe is standard procedure. Any advice would be appreciated. Many thanks Mike.
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I had radiation, not surgery, so I have no personal experience equivalent to yours, but I have read a lot about the experience of other men. Here are my impressions of your situation:
Incontinence:
I think you're actually doing quite well. Many men use multiple pads a day for months or years. If you're down to just one in 5 weeks, and if you're getting through the night without wetting yourself, I think that's a sign that you're on the road to healing. Keep practicing your Kegel exercises. I predict that, in a few months you'll be dry all the time with just occasional drips when you sneeze or do something like that.
Impotence (inability to get an erection):
This is a problem that almost all men have after prostate surgery. The ability may come back and there's a good chance that you will at least be able to achieve orgasms whether or not you can get an erection, though the orgasms will be dry - no sperm will be ejaculated out.
Impotence is a relative problem. You may experience some improvement without complete 100% improvement. There are some things that may help you a little in the process. One is to take a low dose of Viagra, Levitra, or Cialis on a regular basis, maybe daily. Some doctors believe that can help, some believe it can't. I don't know if anyone has really good information about that. Another thing that some people believe can help is to keep trying. Masturbation might help. Using a vacuum pump might help. In the long run, if the impotence doesn't improve, there are treatments that some men find acceptable, not just pills but vacuum pumps or injections that provide stronger help.
I've read that both incontinence and impotence can keep improving for a full two years. After that, you've got what you've got for the long term. However you're only in the first five weeks, so you've got a lot of time for potential improvement.
Outcome on the cancer:
A pathologist will look at the removed prostate and try to figure out if the original characterization of the disease was accurate or needs refinement. He might change the "Gleason score" or "stage" of the disease, seeing if the cancer was any worse than was revealed by the original biopsy He will probably also look all around the outside of the prostate to see if he can spot any places where the tumors extended beyond the prostate itself. If they did, that would be called "positive margins" and might indicate that you should get radiation in addition to the surgery, or might not. This examination should have already happened weeks ago. I suggest calling the doctor's office to find out what the results were.
The biggest test of the outcome will be your next few PSA tests. If you get an undetectable PSA, that's great news. If not, it means that some cancer remains.
Sorry about the side effects, however as close to surgery as you are you are doing great! It is hard to do but be positive. It can take months, but you should improve. The fact that you are only using one pad a day is great news. I was leaking over 700 grams a day and going though three plus pads a day. It took about two months for this to drop to less than 10 grams a day. Are you exercising your lower pelvic muscles? That would help tremendously. Another thing that helped me was riding on a bike.
You may want to consider using Trimix injections for becoming hard. It sounds gross at first, but it works for a lot of men.
Thank you for your reply much appreciated as this is one hell of a learning process. I'm trying to do these exceris,not sure if I'm doing them right. I try & pull the muscles in to make my penis move but my stomach also seems to go in at the same time. I hold it for 10 seconds & let it out and just keep repeating it.
You said riding a bike helped you, I have not heard of that before, Iv got a bike if that helps I'll certainly do that. I just want to get dry it's so sole destroying.
I found that the Tena pads were quite expensive , so I thought I'd try some baby nappies as they work out a lot cheaper & here in the uk you don't pay any tax on them. I thought they would observe just like the Tena pads and they are thinner & slimmer, so Iv been using one of them a day , putting a new one on of a night time when I go to bed & because Iv become dry of a night time it does me straight through to the next night when I go to bed.. I find like now when I'm sitting down & I go to lean over to pick something up I feel myself leaking, it feels like a lot but I don't think it is cause when I change the pad it's hard to tell how much I leak. Well thanks again for your support sorry to ramble on. Many thanks Mike.
No question about it there are things they do not tell you before the operation. The key is to find something that works for you. I also had a hard time figuring out which muscles to tight. I went to a physical therapist that specializes in recovery after removal of the prostate. He helped me, but it sounds gross. He put his finger in my rectum to feel when I tightened the correct muscles. Perhaps you can find someone that has the same training where you are.
Mike, best of luck on your recovery. The Kegel exercises really helped with the incontinence. After 7 days with a catheter, I had 2 weeks with Depends and 1.5 months with pads. It has been 5 years and on a rare occasion, I leak but nothing major. As for ED, there are a few options that work - meds, Muse, Tri mix injections and a vacuum pump. Your Urologist can help you and I believe there are Doctors who specialize in ED.
I had a RARP a little more than a year ago, and I still use anywhere from 1 to 4 pads a day, depending how active I am, so from my perspective I'd say that you're doing extremely well.
The most important thing is to be cancer-free. Then comes getting dry, and finally, the ED.
In my case, I have absolutely no ability to get an erection. My cancer was on the aggressive side, at Gleason 3+4, and the surgeon was unable to spare my nerves on one side of the gland, so the outlook of recovery is very bleak. PDE5 Inhibitors like Cialis and Viagra require some nerve function to work, so that ship has sailed. I tried Trimix, and although it gave me an erection, is was so agonizingly painful I couldn't do anything with it except pray for it to go back down. I will wait it out for another 6 months to see if anything changes, then will consider getting a penile implant, or joining a monastery.
Of course the good news here is that all of the cancer was well-contained in the prostatic capsule, with no evidence of it having spread. The surgeon gave me 95% odds of remaining cancer-free for the next 5 years. All of my post-surgery PSA tests so far have been undetectable. Hey, I'll take it!
What I didn't expect was to slowly descend into a pretty debilitating depression. I have always had low-level depression, but I spiraled into a pretty bad funk over a period of 6 months. The near-death aspect of the experience, plus nearly 5 hours knocked-out on the operating table under full anesthesia no doubt conspired to knock the ground out from below my feet. I became (and still am) mentally disorganized, and my emotions have been unstable- mostly I am more quick to anger and that has put yet another strain on my marriage.
I am overweight and out of shape, and I realized that lies at the root of my feeling bad, so I am working on that first. Taking statistics into account, I probably have not much more than 20 good years left in me, so I want to make them count. I joined my local Crossfit gym 6 weeks ago, and it was the best decision I have ever made. I am getting stronger and losing weight, and most importantly- gaining confidence. and it has done wonders for my depression. They have me doing things that I never dreamed possible. It is helping me figure what kind of life I want to have from this point forward.
Thanks for sharing your experience with us. Although we are each on our own journey, we are all here to support each other. Sorrow shared is halved, Joy shared is doubled.
With all best wishes for your recovery!
(56 years old, DX'd in Oct 2015, PSA 17, 12 core biopsy, 6 clear, 6 Gleason 3+4, RARP March 2016)
"... I am more quick to anger and that has put yet another strain on my marriage."
I found the very worst thing for my depression was to focus on how bad I felt, and the very best thing was to focus on others, first and foremost, my family, but also on my friends and my job.
I'd like to propose an experiment. For some period of time, more is better than less, try your best to make your wife happy. Hug her and kiss her. Ask her about her day. Watch movies or TV with her, or whatever she likes to do. Smile when you see her. Make her smile. Make her laugh. Then notice what it does to your own feelings. I bet that when you were courting her many years ago you got a big kick out of doing those things, and I'll bet you still can! I'm betting it will do a lot to heal your depression. It will be like falling in love again.
"I will wait it out for another 6 months to see if anything changes, then will consider getting a penile implant, or joining a monastery."
Hmmm. That's a tough one. Does the monastery have a good library? Does it have a bar?
123Mike123, what you are going through is normal post-surgery. After 3 months my leakage stopped. After 8 months, I had no leakage with the exception of a drop here and there. This will heal in time usually. Erections: The majority of men I have heard from the PC men's groups, most cannot get erections back, with the exception of the Tri-mix injections into your penis. The pump is a midevil torture chamber, painful, and by the time the suction sucks blood into your cock the pain takes away any type of erotic sensation. The VIAGRA gives intense headaches for most. Cialus is better but ED medications are marginally affective if the nerves are not there. When they take the prostate out, the nerves are surrounding the outside of the prostate as well as two cables, one on each side. WHen the prostate is removed many nerves comes with it. Thus, what ever assortment of nerves, each individual man is left with determines if you will get erection or not, if at all. I get NO erections with any of the ED treatments ( if you can call them treatments) with the exception of the penal injections. There is pain and some bleeding at the injection site AND IT IS VERY VERY EXPENSIVE. For most it takes a min of 25ml to have one erection in a 100ml bottle which costs $150.00 not including the shringes. Last, dating has been tortureous. Once a potential dating partner hears you cannot get a hard cock...its history... The phone calls stop being returned timely, or the "MAKE NICE" starts and the potential drifts off. The major problem I have is socially trying to get dates.
Thanks for your reply & advice it is appreciated. This is a very cruel disease to have even when it's treated it leaves us guys with these side affects. Don't get me wrong of course the cancer is the most important thing to deal with & to get rid of, it's just a pity it takes our . sex life away . You said you haven't had a relationship since having surgery & not being able to have elections, how are u managing to mastebate & climax, having you given up altogether. I had a healthy sex life before this cancer took place, I will miss this immensely, not to be able to pleasure yourself or share the pleasure will take a lot of getting used to. Until now I have not tried to orgasm as I cart get an erection & to try and mastabate with a limp penis is very hard work. It was nice just getting aroused feeling your penis getting hard because you were thinking of something nice or watching some porn, now there's none of those feelings, it's a lot to lose. Even if you manage to orgasm they say it's different and when u ejaculate u sure urine out is that correct. . I look forward to any responses. Many thanks. Mike
yes in the first year after the operation when i orgasmed i shoot piss. gross. I stopped shooting piss after the first year. Can you imagine being with a lover and shooting PISS all over the bed. GROOOSSS. This was my experience. IN addition, I have deep internal orgasms. Rubbing my dick like jacking off , I cannot do. There is little feeling in the cock. I have to concentrate on the base of the cock to get the nerves that are left to achieve orgasm. The cialus I take actually intensifies the orgasm feeling.
Don't start bike-riding until you've talked with your surgeon. They let me resume most normal activities after 6 weeks, but made me wait about 3 months to ride a bike, because they said the pressure from sitting on the bike seat could detach the urethra from the bladder. You sound like you're on target as far as incontinence goes. Be sure to continue (or resume) Kegel exercises. Kegels are your friend. It's been 5 years since surgery for me, and I can still leak slightly sometimes -- when I'm really tired, when I'm sick, when I've had too much caffeine before bedtime, when I sit on the side of the bed and put a pair of socks on (don't know why, but I now just avoid doing it.) Not enough to wear pads or make a statement through my clothes, just a little dribbling and I change my underwear. I don't sleep naked anymore for that reason.
As far as the ED goes, it is early, and you need to talk to your surgeon about it. If he's clueless about penile rehab, talk online to other guys and find out what works for them. At my six-weeks checkup, the doctor told me to play with myself twice a day and try to have sex once a week. He gave me a prescription for ED drugs and a pump. This is the damnedest disease I know of, one where the doctor says to fuck and you can discuss the state of your erections with strangers and nobody thinks it's weird.
I'm 54 and had my Robotic Prostatectomy on Nov 10th I had incontinence for the first 3mouths. It just gets better as time goes on everyone is a little different. Be positive and have hope you sound as if you are doing well and are on track. As for the erections I had nothing for the first 10 week and it's just getting better every week also. I cant achieve a full erection hard enough to penetrate my girlfriend but we have figure out ways to enjoy a our sex life.
As for the orgasm it is different but I'm happy with what I ended up with better than nothing and she loves that there is no mess!!!
Be positive see a Doc for the ED and get on some Cialis, Viagra or the injections for the ED and see what works for you.
Remember if you don't use it you will lose so use it as often as you can.
Thank you for your support & advice much appreciated. Mike
Cut and pasted from many other posts, so maybe only marginally linked …
Five weeks? Bloke, you are not even within a year of healing yet. Keep up the Kegels and get back to us in a couple of years. My RRP left me incontinent to the tune of 1-3 full pads per day. After months of Kegel exercises (Google them; there are many varieties) and another year or two of healing to ensure maximum recovery, he sent me to an oncologist who specializes in post-RRP incontinence. In fact, she lectures and trains surgeons all over the country on it. After extensive exams and tests, her conclusion was, "We don't know why you're incontinent, so we don't know whether surgery would help and doubt it justifies the risks. Besides, our goal with incontinence surgery is 1-3 pads a day. IOW, you already meet our sling/sphincter success criteria."
Upon hearing that, my original surgeon/oncologist/med school dept head/research director/all around great doc advised against incontinence surgery FOR ME. I had already reached that conclusion; I wasn't eager to risk surgery whose expected (by experts) outcome was my present status, and find pads an easily tolerated nuisance. I carry spares in every pair of pants (they make some nice-looking cargo pants with all-but-invisible pockets) and every coat, and check the one I’m wearing often if in doubt. HOWEVER, I am long retired, so I don’t have to be CERTAIN I never leak.
One pad (the ONLY pad I consider worth using is Tena's; I stock hundreds of them when on sale) may last me 24 hours, or I may soak 4 or 5 a day when out and about; I must be especially careful not to let them flood when not at home. OTOH, a two-hour, flat-out gym session leaves me dry. I can only guess the difference is that in the gym, even with unstructured activities like trapeze work and sprints on the track or some piece of equipment are expected/anticipated by my body, whereas in the garden or the mall I don't subconsciously anticipate physical exertion. (The gym exception is the notorious trampoline, which I would flood within minutes. I cover my eyes when I walk past those Mortal Enemies of the Incontinent.) I and everyone around me is very glad my sport is a water sport; I'd be very unpopular on a basketball court, and wetsuits wash out easily.
I sorta couldda told these guys my problem isn't Kegel/pelvic floor muscle strength; it's perception; I don't perceive most leaks. I can flood a pad in an hour without ever feeling a squirt. Without such a trigger, my Kegel muscles do not react automatically. Several men in one online PC forum still suspect there's still some leak-sensor nerve surgeons have not found and/or accidentally damage; urologists deny that. Given today's microscopes, I doubt there are any undiscovered nerves.
So I'm stuck with the finest orgasms I've ever experienced. DAMN! As a young man my ejaculate was, what, an ounce? Now it's a pint to a quart, which must be experienced to be appreciated. Of course, that confines them to the shower, but that beats not having them. (That’s because my key to anything useful besides as a waterspout is having a full bladder. Empty? Back to a waterspout.)
As for predictions, I don’t do that. If I were that smart I’d be giving Warren Buffett a run for his money … literally.
As for “My cancer was on the aggressive side, at Gleason 3+4, and the surgeon gave me 95% odds of remaining cancer-free for the next 5 years. ..” The oncologists in whom I placed my life a month ago say evidence shows that Gleason 3+4=7 PC behaves like 3+3=6 … i.e. that it needs no active treatment because it’s about as UN-aggressive as PC gets. As for that 5-year 95% prognosis … the sun also comes up in the east. I know that sounds snotty as hell, I apologize, and it’s a little late to help you, but we MUST alert more men to that paradigm so they can research it before incurring the SEs for no purpose. Unnecessary issues such as your “What I didn't expect was to slowly descend into a pretty debilitating depression” confront many men whose uninformed or money-hungry doctors push heavy-duty treatments on light-duty problems screw up countless thousands of lives every year, and we can help slow that abominable freight train down with our voices.
Your “near-death experience” (hundreds of thousands of people every day call that a pleasant nap) and “5 hours knocked out” (Dude, you were ASLEEP!) clearly indicate your independent tendency towards depression. I hope you’re treating that independently of your cancer, as it is very often completely manageable by itself. Countless cases are cured by some simple pills that even my dog gets for sound medical reasons.
BE CAREFUL WITH THAT CROSSFIT. I’m glad it’s helping you, but its injury rate is through the roof. What we eat affects our body fat percentage FAR more than what we DO, and there are FAR more long-term-effective and FAR safer ways to exercise. Google Bodybyscience, Superslow® and HIIT for examples. Don’t give up yet; I’m 73, and except for this cancer $#!+, longevity forecasts give me another 30 years.
Mike, I had radiation, brachi surgery and 6months of hormones. First , get off hormones as soon as you can. Secondly, I rode bike throughout treatment, including 65 miles on my 65th birthday 4 weeks after surgery and in the middle of radiation. I take b12 for fatigue. I have urgency to pee and returned to work as a sub elementary teacher. No room for accidents. As far as sex, I went from no desire to a fair amount of enthusiasm. Erections are few and far between but my wife and I have adapted to taking care of her first and me second. It works for us. I have avoided pads, leakage and excessive peeing by using tumeric and cranberry pills. I do go 4 times a night but always make it. I had to change my bp meds as the cozar created excessive peeing with stinging. The regular Dr was kinda of clueless on side effects of other meds. Overall, I still have some fatigue but ride the recumbent x bike 20 miles to nowhere daily. Keeping busy helps with depression and my students keep me smiling
As I've discussed elsewhere, I had "salvage" surgery in 2013, after a failed radiation treatment 5 years previous. The symptoms you've described are quite mild in comparison to those following a salvage surgery. I lived with complete (COMPLETE) incontinence for a year afterward, finally agreeing to have an AUS installed. I'm just sorry that I waited so long. With an AUS, I can live a normal life; before, not so much.
Perhaps your intermittent incontinence will improve. I would believe so. There are options.
I had robotic surgery and after 4 months came home from a day out and discovered I didn't wear a pad that day. Probably could have stopped a month earlier, but you get into a pattern of doing without recognizing your progress. You've been through a lot and acceptance is a way we deal with the stress. You will get there in due time don't rush it, it will happen once you've accepted you are on your bodys time line not your time line.
Hi Mike, I had Robtic in Sept 15. I experienced all the same side effect that you have. 1st...you gotta be patient. I know it sucks but I've been 2 years out and I'm finally getting nightly erections with the help of low dose viagra. If you get the generic it cost me $10 a month at Sams Club.
Also get a penis pump. It will pull the blood into the (necessary parts). I also took the shots for an erection...the stuff works. It's a hard thing to do but, it will work for sex. So all of this helps so why not try? But again, it takes time.
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Experience with penile clamp or other noninvasive methods to address incontinence
