HealingWell
Search Close Search
☰

New member unhappy with his new "member" after RP

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/9/2013 6:12 AM (GMT 0)
Awesome to hear from other guys with Prostate cancer. I learned a lot in just 20 minutes of signing on. THANKS.I had robotic radical prostatectomy 2 months ago.
I had no idea that I wouldn't have an erection for up to a YEAR! I guess I got a vasectomy at no extra charge.
The incontinence is now over, after 2 months.
Over the years I've had many surgeries, but nothing as disturbing, or complex, or uncomfortable as this one.
Something in my mind and body tell me that something is wrong with this. I feel like some Incan having trepaning done. Crude.

WHERE'S MY DICK?
I woke up after surgery with someone else's dick. The catheter had been pulled out after a week (whew), but I seem to have been left with teeny peener. Is this normal?

Charlie, I gave your post a title. If you don't like it let me know. -- PeterDisAbelard

Post Edited By Moderator (PeterDisAbelard) : 4/9/2013 6:33:49 AM (GMT-6)

Posted 4/9/2013 6:31 AM (GMT 0)
Hi CharlieB-

Too often, the docs don't tell us what to expect.

Penile shrinkage is unfortunately very normal after RP. So is climacturia (=urination at orgasm), and stress incontinence. Sometimes testosterone levels drop too. With any luck, they'll all get better over time.

The sooner you start your penile rehab program (ED meds, pump, frequent **********) the less likely that the changes will be permanent. Good luck.
Posted 4/9/2013 8:55 AM (GMT 0)
Welcome to the forum
(Perhaps one of the mods will give your thread a title if you don't to help us all know you are a new guy and to explain what's on you mind.)

Yes, sadly skrinkage is common, and sadly it's not often mentioned beforehand.
There is however no standard timetable with ED. Some guys had it back under control soon after the cdath comes out, opthers find things working again after years, and many need help with pumps pills and jabs.

But if you had surgery 2 months ago you must soon be due your first post-op PSA test and that's the most important part to deal with.

The Guys (and Gals) here will probably wonder what your stats are, eg how old you are, how high was your PSA Gleason etc before surgery and what did the post op pathology reveal. (You can put some info of this sort ion your signature - one of the settings in your profile)

But glad to hear the incontinence is over.

Alf
(edited due to typos)
Posted 4/9/2013 1:19 PM (GMT 0)
Charlie,

After reading your first post her my first thought was OMG, that sounded so much like my first HW post 7 weeks after my surgery in 2011. I came to this forum looking for the same answers. First on the ED I hope your URO has put you on some type of penile rehab program to get blood flow back to the penis. I started 30 days of 5mg Cialis at 4 weeks after RP and then Trimix Injections. It can take up to 2 years to get back natural erections for some guys and for some its Trimix or nothing, which is where I am now. It was the research on Trimix that got me to HW.  A lot of guys here use it very satisfactorily. Once you get over the thoughts of sticking willy it can work fantastically with our all the side effects of Viagra and Cialis.

On the shrinkage, The first time my wife say me after surgery naked she said what happened did the doc take our half your penis with the prostate? I said no he took half of it and sold it on eBay.  I can say that after 19 months a lot of the loss has come back thanks to Trimix and a lot of doctor approved self manipulation. That was the fun part when I told my wife that the URO prescribed that I watch Adult Interaction and do a  self pleasuring every day in between us using Trimix for therapy, what could she about that? turn   I am also starting to see some un drugged life coming back and can get about 40-50% wood for a very short time so I am still holding out hope that it improves more.

Posted 4/9/2013 3:12 PM (GMT 0)
You know those guys who you see on TV doing the "Polar Bear Plunge" on New Year's Day? -- the heavy-set, middle-aged guys (who really shouldn't be wearing that Speedo) who cut a hole in the ice and go for a swim? -- those guys? Well, if you grabbed them coming out of the water, wrestled them down to the snow, got out a ruler and measured their manhood, you would get almost exactly the same measurement they will have the day after they have their prostate removed.

Part of the reason that surgeons don't warn men about penile shrinkage is that medical science doesn't see it, or if they do see it they don't see very much of it. Multiple studies have failed to find it, or have found that it averages half a centimeter. Men can see it. I certainly can in my case. Men's wives can see it. But the guy with the cold hands and the ruler doesn't see much difference before and after surgery. Go figure.

I think you will find that if you can get that bad boy pumped back up somehow -- pills, pumping, injections, naughty videos, whatever it takes -- you will find it reassuringly familiar. Talk to your doctor about some sort of penile rehabilitation. What shrinkage does take place happens gradually after the surgery from atrophy and rehab can help with that. It also can help prevent the damage that extended impotence can do to your head.
Posted 4/9/2013 3:19 PM (GMT 0)
My willy is noticeably shorter. I'm hoping it's because of compression due to the cath, and will return to normal size after the cath is removed in 2 days.

While the cath has been in (6 days thus far), I have had a few occasions of getting some "perky tingling" from willy when looking at my beautiful wife in a "loving" way. So, apparently he has a bit of life in him yet.

-Gedaliah
Posted 4/9/2013 3:24 PM (GMT 0)
My uro was fully aware of the phenomenon and the reason why. (He even drew a diagram)

The urethra passes through the prostate so when you remove the prostate you remove a certain length of urethra as well. The bigger the prostate the longer the bit that gets removed.
You then have two sections of urethra that need to be sewn back together again, one is the stub of negligable length by the baldder and the other is the bit in the penis. The surgeon thus effectively has to sow the end of your penis that's inside you to the bottom of the bladder, result, the whole of the penis gets moved inwards.
Your penis is thus actually the same length as before, but there is simply less of it visible on the outside!
Now over the course of time things may/will rearrange themselves. But in the immediate aftermath of surgery it is vital that the join in the urethra heals nicely, so don't go tugging at the shrivelled acorn too soon to try and improve things.

It can be important to take the loss of legth into consideratiopn especially when peeing as you may make you clothes wet if you think it's out when it isn't.

Alf
Posted 4/9/2013 4:00 PM (GMT 0)
Leave it to English Alf to go get all technical on us. But that is a very good explanation for it. Do not try tying weights to the end hoping it will stretch either. smhair   

Terry

Post Edited (Water Guy) : 4/9/2013 10:20:59 AM (GMT-6)

Posted 4/9/2013 4:17 PM (GMT 0)
Add me to the chorus of those wondering where the penis went after surgery.  And like Alf, you have to be very careful when peeing or you will certaining soil your clothes.  I have gotten to the point where I have to drop my pants past the urinal or toilet or I will pee all over my clothes. I have seen some life and length come back since starting Cialis last week.  While there has been nothing close to an erection eight weeks out, I have had the dry orgasm.  It was pretty intense....or maybe it was such a shock to have one.  Nonetheless, it was pretty exciting! So I guess there is hope down the road.
Posted 4/9/2013 4:19 PM (GMT 0)
Alf,

Most of that lost urethral length is made up for by the bladder repositioning downward which happens fairly quickly in the recovery process. The rest is made up by the re-attached urethra stretching which also happens relatively quickly. The length of the erect or stretched penis is determined by the erectile chambers which are anchored to the pubic bone and are not shortened or moved during surgery. As long as one keeps the erectile tissues in good shape (rehab to prevent atrophy) then the size of the penis in terms that matter is not much affected by surgery. The flaccid member does appear smaller for a while for the reasons you mention, but that recovers, too.
Posted 4/9/2013 4:33 PM (GMT 0)
Mulhall looked at animal studies of penile shortening and believes that atrophy and fibrosis of the penile tissue is responsible for much of the length shortening, and uses that fact to argue for early penile rehab. He believes that atrophy starts very soon after RP. Maintaining good oxygenation of those tissues and as much stimulation as possible seems to be critical. Here's a good review article on this:
Penile morphometric changes after radical prostatectomy: Evidence-based

As for the magnitude of the loss, the following pilot study found that shortening occurred in 71% of men within 3 months of RP, and half lost more than a cm (.4"):
Pilot study of changes in stretched penile length 3 months after radical retropubic prostatectomy.

This study found an average loss of .8 cm at the time of catheter removal and continuing for a year after:
New insights into the pathogenesis of penile shortening after radical prostatectomy and the role of postoperative sexual function.

This study found a 15% decrease:
A prospective study measuring penile length in men treated with radical prostatectomy for prostate cancer.

I think that many of us don't complain to our doctors enough about this. One guy in my PC support group did, and his uro told him to quit complaining because "he saved his life." (The guy went in with small amounts of Gleason 6). Arrogant doctors piss me off.
Posted 4/9/2013 4:53 PM (GMT 0)
I'd be happy with only one year. In two weeks I am one year out.  I am continent with undectable PSA but ED is still a major problem,.  I did not believe I would be in this position.  I am gettin some partial erections but the heartache, depression etc of the ongoing ED has been challenging.  I think that I may make more improvement but I no longer have confidence in a recovery that I will be happy with.  Sadly, but honestly, I regret my decision to have surgery.  I keep up with rehab and at times I am more optimistic but today is a dwon day for whatever reason.
Posted 4/9/2013 5:07 PM (GMT 0)

Like the man said...
Mulhall looked at animal studies of penile shortening and believes that atrophy and fibrosis of the penile tissue is responsible for much of the length shortening, and uses that fact to argue for early penile rehab.

It's fine to get mad at your surgeon, if that makes you feel better. But permanent shortening of ones Johnson can be avoided, or at least minimized, by proper post-surgical rehabilitation. Talk to your doctor about that.
Posted 4/9/2013 5:24 PM (GMT 0)
English alf's explanation is in line with what my surgeon said too. there is a different angle now, with the bladder pulling in on your penis, because your second "support", the prostate is gone. I am 4 1/2 years out from surgery. For 2 years or so, my penis appeared slightly shorter only in the flaccid state, when erect, completely normal. I was one of the fortunate few that had zero ED after surgery. I was also on a catheter for the first 63 days after surgery, which sometimes I think made a difference. I was having errections and orgasms while still on the catheter (I wouldn't try the later idea again, was kind of creepy).

Now, over 4 years out, my penis is both the same size flaccid as before surgery, and definitely the same if not longer, erect.

ED and incontinence are the 2 big unknowns going into surgery, you never know for sure what you will get till its over with, nerve sparing or non nerve sparing, open or robotic surgery. My uro/surgeon did fully inform me in advance about the bladder pulling inward on my penis, so I wasn't shocked when it happened.

Hopefully you will see signs of life soon in that area, you haven't been out of surgery for very long.

Good luck,

David
Posted 4/9/2013 5:48 PM (GMT 0)
I think shrinkage is directly related to use and blood flow.

What may be very normal for some is not normal for many others.

Many links posted n last year about this issue. Some point out that in fact use and blood flow and quick rehab are factors that can mitigate the possibilities of shrinkage.
Posted 4/9/2013 8:57 PM (GMT 0)
Hello:  Shrinkage does indeed happen and for most of us the major shrinkage is in the "flacid" position.  When the cath was removed, I had a  "button" and no "shaft" could be seen at all.  At 20 months things have improved to a point where my un-erect and erect sizes are close to pre-surgury levels.  I was diligent and used a VED, 5mg. of Cialis, and injections on a regualr basis and now at 20 months, I don't need any aids. Orgasms are the same, no urine issues whatsoever.  My only real complaint at this point is that I no longer can get an erection by mearly thinking about or looking at a pretty woman and that my libido seems to have been cut in half.  I just had a testosterone test and the results were 476 and 14 (free). For some reason many of us drop in the libido department after surgury.  Cancer is stressful and then we have incontinece and ED issues on top of that!  So perhaps anxiety is also part of the problem.

To summarized, the time to regain size and have normal erections is on the order of years for most of us (not months or weeks as we are led to believe).  My surgeon said "no sex until 8 weeks after surgery", so naturally I figured that it would take 8 weeks or less.  Far from it.

I read an article that said that after RP, you end up with same amount of ED as your Father at best case, or Grandfather at worst case. Some of the younger guys may be much luckier.  Taking 5 mg. of Cialis everyday, helped me to get REM sleep erections during my sleep and that may have helped over the long run.

All in all, at 60 years old I can still have good sex without any aids...so I am blessed. Don't get depressed, the healing will take between 1 and 2 years for most of us and the more relaxed we become, the better the results will be.

Bill K. from NJ 

 

Posted 4/9/2013 9:21 PM (GMT 0)
Hello CharlieB, I'm just about 8 weeks post op for an RP and I, like you, had no idea the extent of the post surgery trauma both mentally and physically.

My situation has been compounded by not having a local doctor lined up for follow-up care.

The incontinence advertised where I had surgery stated the following on their FAQ:

= = = = Begin Question from FAQ = = = =
Q: When will I have complete urinary control?

A: Our most recent results show that 50 percent of men have full urinary control and do not need pads within 24 hours after catheter removal. The rest of our patients may take up to four weeks to get full urinary control. A few patients will leak urine during heavy physical activity. We will discuss our most up-to-date results with you at the time of your visit.

With conventional surgery, 50 percent of patients will have full urinary control within 3 to 6 months following surgery. Ninety-five percent will achieve this within one year. One of the advantages of robotic surgery is how quickly urinary control returns compared to conventional surgery.
= = = = END Question from FAQ = = = =

Needless to say my expectations were high and people around me as well as here weren't sure why. Hopefully some of you understand now why I was so surprised. I'm still having continence issues. They're at 1 pad per day and usually associated with going from sitting to standing, shifting positions, brisk exercise, etc. I'm working to get that under control but it does mess with your head.

Hang in there and hopefully you'll see some improvement soon.

The ED issues were a total shocker to me. My doctor too said no sex for 6 weeks after surgery. I laughed at that as that wasn't possible. Pre-surgery I was 100% fine. Now, it's like it was switched off and I'm doing my rehab and trying to stay as optimistic as possible. Thankfully I still have my libido and a willing partner to keep trying with me.

Post Edited (BillD) : 4/11/2013 11:37:33 AM (GMT-6)

Posted 4/9/2013 9:32 PM (GMT 0)
Bill, it's different for all of us. I would assume the the difference you and I experienced, for instance, are simply a result of our age at the time of surgery. I'd say that the age of the patient determines the outcome of many of these things to a great degree.
Posted 4/9/2013 9:41 PM (GMT 0)
david, I agree with you. I'm 53 years old but in extremely great shape. I cycle competitively and put in 3500 miles per year. I workout several days per week, ski, play tennis, etc and had zero symptoms prior to surgery.

Yes, from what I've seen on this forum younger people have done much better than I did. I just never expected it to be like this. I'm nothing if not honest and want to make sure others have realistic expectations going into something like this. You never know when you're going to be the anomaly.
Posted 4/9/2013 9:55 PM (GMT 0)
wow, that's a lot of miles. What county are you in? My county has some great cycling areas liek the great swamp.

Yeah, impossible to anticipate SEs short of general trends, it's very frustrating and daunting going in. Agree that it's good for people to know what can await them. Equally important to hear about the many success stories in my opinion as these can be of great help going in. I know they helped me.
Posted 4/9/2013 10:56 PM (GMT 0)
The success stories gave me the courage to go through with this. It's the reality that has me angry.

I'm in the US on the east coast so spring, summer, and fall miles. As you can imagine I'm really angry about not being able to ride yet.

Post Edited (BillD) : 4/9/2013 8:19:58 PM (GMT-6)

Posted 4/10/2013 12:09 AM (GMT 0)
First off, I'd like to thank the many of you who so quickly replies to my posting. If the news wasn't that good, at least I don't feel quite so all alone after RP surgery.
I see most people post their vitals. I don't know how to do that exactly yet, but:
Age: 65
DX 11/12 Gleason 3+3 Lower right.
DX 12/12 G 3+4 4 out of six.
PSA = 17+
Robotic surgery 2/4/13
PSA 4/2/13 <0.1
Don't know what any of this means yet as I haven't had a follow up after surgery. Finally got continent a few days ago. Keep those Kegels going! Complete ED at this point, and still some aching in the testicles. Is it usual to have a vasectomy along with this?
I think that the doc's should have a lot more 'explainin' to do. In and out of the hospital in a day. I would hope so, the bill was $48,702.40 for a one-night stay (not including the surgeons, or anaesthesia)!
Got some, and tried some Cialis. I'd get more kick from Champagne.
Posted 4/10/2013 12:12 AM (GMT 0)
Charlie-

To include your vitals at the bottom of every post, just put in the info in your profile signature. To do that, look for the "My Profile" link near the top-left of this page. Then click "Edit Profile" and scroll to the bottom.

-Gedman
Posted 4/10/2013 2:25 AM (GMT 0)
Charlie-- all good advice out here on this one!

Take the viagra every day, use the pump at least for a workout.
And take the doc's advice on **** and self help!

I got it mostly all back in a year or so---- worth it!!!!!!!!!! It aint quite the same-- but it is till quite good!!!!
Posted 4/10/2013 2:30 AM (GMT 0)
CharlieB, saw you said you were continent a few days ago. Did it just go from 1 pad to zero in a day? I'm going to see a local doctor to hopefully find out what's going on with me and if it's just normal. I need to get over this hump soon as it really has me down.
✚ New Topic ✚ Reply
12