Post-prostatectomy- my experience and relative facts

[Motorheadrulz]

Newbie here, and glad to have found this forum.
I've been searching for resources with honest facts; it's amazing how little you can find from the local medical community, and what insurance will pay for. I've spent countless hours reading posts, medical research/journals, and watched vids, etc., so I've done my homework.

I would like to share my short story, and see what you folks have tried (with success) during your rehab. I'm not seeking social media type ego boosting, but relative facts. Since I've had so much trouble finding real answers, this may help some future sufferers, too.

I'm 52 yo, securely married, in fairly good shape, and am 8 mo post-prostatectomy. I'm sure many of you can relate- my expectations at this stage in my life did not include dealing with this bullshit. I thought I'd be enjoying the prime of my life- work is secure, the house is empty (kids are grown up and gone), and I can chase the wife around the house all day. Not so much, eh...

Months 1-4 were challenging to transition from the catheter to the super heavy flow max strength pads to light pads took some potty retraining in my brain. I hated pissing myself while trying to eat dinner. Now at 8 mo, I do not wear any pads unless I plan on pissing myself. I occasionally leak from coughing, sneezing, tieing my shoe, or going to the chiropractor. My urologist says this will improve over time, and it's still early.

At mo 4, my uro prescribed cialis and a vaccuum pump to start getting blood flowing to my best friend. Since the surgery, I have the penile shortening and he looks like a turtle head hiding in its shell. I pull it out several times a day to let gravity get blood moving, to help aim where I piss, and it just looks better for about 5 min...

At 8 mo post-op:
- I'm too stubborn to admit my limitations. As I joke with my uro, I'm really bothered that I'm the youngest guy in his waiting room. I see all the other patients who are obese, in wheelchairs, wearing catheters, etc., and I think- is this going to be me in a couple years? I mean no offense the the elder statesmen on these forums, but I assume you also felt this way at some point.
- The central processing unit (that mushy thing in the skull) is running on overdrive. I'm still having vivid dreams of a 3-way with 2 hot, stacked Aussie blondes that keep cumming back for more. Only to wake up and my best friend is dreaming of sleeping puppies. WTF?
- My uro has insisted on injections, but I'm still hesitant. Ok, why? Because from what I've read and discussed with other sufferers is that nerve regeneration starts to kick in at 18-24 mo post op. See my previous point above...
- I love my wife, but we can't stand the fact we have to "schedule" our sex life. Spontaneity is gone, and so is either one of us initiating without having the "should I pump up" or 'let's just cuddle" conversation. We are searching for a competent therapist who can treat not only couples counseling, but also sexual dysfunctional (for both)
- The cialis is not working. I do not get any random wood, and I sorely miss my best friend greeting me at attention. Where did he go? I bet he's hiding in his shell...
- the pump does not work as expected. I've tried different pumps and sizes of rings, and do not get rigid enough for penetration or to hold blood in the shaft. I'm an average size, and the smallest rings are just painful; the medium doesn't hold enough blood.
--Several times during pumping I've had to reset/re-pump and start over. Since you only have a 30 min window for venous blood- that really limits your A-game. Or, that dreaded time between foreplay is over, now wait while I pump moment. Total cock blocker!
--When pumping, I'm still leaking pee; or I'm leaking while I have a ring on. And my wife hates getting pee'd on, so that's wiped out many positions, oral pleasure, most efforts, or trial and error.
- Even while pumped, there is no nerve response. I joked to my uro that I have an electrical problem- the switch is not turning on the pumps. It still feels good to be touched, but "I'd piss on a spark plug right now if it do any good". If a good bio-engineer could invent a nerve stimulating implant to fire up the pumps (and make it bluetooth)- they would be gazillionaires. I mean, I saw an implant on TV for sleep apnea, and I know folks who have cardiac implants... urological engineers unite and save a pecker! I can see it now... "from the makers of Johnson and Johnson..."

I'm still hopeful that I'm the "normal" category and things should get better in the next year- as in nerve response, natural erections, and intimacy with my wife.

So to help us through this journey, what have you guys experienced? Please, relative facts are what I seek. There's a lot of bullshit, snake oil, and sponsored content available; sifting thru it is a challenge. I understand everyone has different results, but as men we all have similar traits and expectations.
1. How long until you got control of the incontinence?
2. Did the pills work and when?
3. Did pumping work and when?
4. Did injections work and when?
5. What else worked- electro-stimulation, voodoo dolls, pixie boner dust, etc.?
6. Did you seek counseling; did it help?

Thanks in advance,
Motorheadrulz

[dtwarren1942]

When you pump, do you use a tight constriction band to maintain the Pumped erection?

Injections are an effective way (better than Cialis) to force blood into your little friend which will help stimulate injured tissue and nerves.

[Stutz427]

Its been almost two years since I had my nerve sparing RPR.

1) Incontinence. It slowly gets better to where you just will leak at inopportune times. Some guys have no trouble at all
2) Pills did not work
3)VED does sort of but need restrictor rings and its not spontaneous
4) Injections never worked other than a chubby, Many tri mix solutions, quad mix and super quad mix, all no dice just a sore friend
5) Nothing else worked like tens, etc
6) No counseling.

My suggestion is if you want an active sex life and no hassles the implant is the best way to go

[vajim1]

My results were just like stuz427, my uro told me after 1 month to take Cialis 5mg daily and to use the ved daily. I read later you should start right after surgery. when cath is removed(2 weeks). I also read to start injections soon after if Cialis does not work. I waited 1 year with no response before he finally agreed to start injections. They did not help just got bigger never hard and still had to pump and use a ring.
You need to do kegals for leakage.
Implant was what worked for me.

[peyroniesjr]

Good Morning,

I had my RALP 4/1/2019 & Oct 2018 was diagnosed with PD. The Ralp made my ED & PD worse, pills did not work & the VED was no help. The year was hell & the only great thing I did was get an implant 2/21/2020. Best thing I did it also improved my incontinence, which wasn't that bad.

I'm almost 18 months since my RALP & not much feeling in my dick , but my ball sack has feeling. It takes me a while to hit the bid "O", ,y wife is also glad that I went with the implant. She wasn't cool with it at first when I said I was going to do it.

Good Luck!

Junior

[cincinnatus1951]

Motorhead: See the following for my experience. Be glad to cchat if you'd like. If so, send me contact info and an available time.
Guys: I’ve been doing a lot of thinking about the “right” time to decide on an implant. A lot of discussion about pumps and injections as well as pills indicates that a lot of men get some initial positive results, but, after time, the effectiveness declines. With injections, many report scarring and penile distortion. What’s not nearly as clear is what percentage of injection and pill users continue to have erection difficulties. Human nature teaches that the satisfied folks rarely complain. There are plenty of examples of marginal effectiveness of pills and injections, what I can’t tell is how large the percentage is.
In my own case, I went for about six months with pumps and pills with marginal results. My prostate surgeon recommended injections, which I used for about a year with inconsistent results. ( I had a Robotic assisted nerve sparing prostatectomy in July, 2013.) Sometimes, very little, sometimes too long, and never knowing how long the erection would last. I did have good firmness and longitudinal stability when it worked. At my two year surgical follow up visit, the surgeon suggested we consider an implant. My initial reaction was “They are not doing that to me!!!” We continued to bumble along. If the injection did not work (rarely) or did not last long enough, we would resort to toys and tongue. We were both able to climax; but, it was certainly not as satisfying as traditional penetrative sex. We were also getting tired of the hassle with injections. We visited one urologist (sexual medicine) specialist and he recommended “combination therapy” of pills and injections. He also recommended we consider an implant, showed us the prosthesis, gave us web sites where we could watch the surgery. We also learned of FrankTalk through a prostate cancer support group.
As we learned more about the surgery, risks, aftercare, healing, etc. the thought of surgery became less scary. My wife initially discouraged it saying we can do OK with toys and tongue, is it worth the risk? We agonized and went to see another sexual medicine specialist. He did not try to sell us on an implant, however, said none of the other therapies were working for us. At that stage 21/2 years out of prostate surgery, the likelihood of spontaneous erections returning were essentially nil. After one particularly frustrating love making session, I said to the wife, “Heck with it “I’m signing up for the implant. She agreed. I had the implant in January 2016. We had a text book recovery and we both wish we had not wrung our hands for so long. The implant removes all the hassle and uncertainty of the lesser methods.
That brings me to the point of this note. I have advised a goodly number of people both in public and private posts not to consider an implant unless nothing else works. While I still believe that to be the case. For the above reasons, I would recommend seriously thinking about an implant as soon as frustration begins to build. Essentially, once pills become less effective and you have tweaked your formulation and injection dosage without satisfactory results, I have come to believe that further avoidance of an implant is not helpful. In talking with my docs, they too, believe couples get frustrated and just give up on sex. My cardiologist even offered he would like to see way more men go for implants. He says many patients report that they have just given up.
Bottom line is I do not know how to accelerate the process to an implant. We believe we waited six to nine months too long. I also recall my almost complete rejection of the first implant recommendation. For guys who are say over age 55, are frustrated and have systemic ED regardless of the cause, I would say “Go for it”.
Sorry for the long post. Just food for thought. Cincinnatus

[Motorheadrulz]

Thank you to all who have responded. I expected more anecdotes, though.

I expect to continue my rehab with the pills and pump (only 9 mo post-op) for a while longer. We have been occasionally successful hitting a Big O with the pump/rings, but need to repump several times during the session. I've found a small nerve on the shaft barely working; the nerves aren't really firing like before surgery. So it's frustrating, but with a glimmer of hope.

My wife and I need to get into counseling, because she already feels "on the clock" when using the pump, and that really kills our mood. It has now become a chore and/or a scheduled appointment, and not an anticipated pleasure. I haven't heard her ask me to pump up yet. So we are taking this time to fix a interpersonal social issues before jumping into the injections/bionics. This needs to be a team effort...

Keep posting guys, this really helps!

MHR

[malibog]

Motorhead: See the following for my experience. Be glad to cchat if you'd like. If so, send me contact info and an available time.
...
Guys: I’ve been doing a lot of thinking about the “right” time to decide on an implant.
Sorry for the long post. Just food for thought. Cincinnatus

I am a newbie here and have spent a lot of time reading on the forum and I am wholly impressed. What a great bunch of guys dealing with difficult issues in such a mature, supportive way.

Cincinnatus' post I just read and there is no shortage of similar posts hereabouts. I felt constrained to say how admirable I find it to be. He has taken the time to write a considered, thoughtful post, to a complete stranger, with an offer of a one-on-one exchange to boot.

In my reading here I have come across a great many similar posts to that I am praising here. People who have taken the time to write in detail about a variety of personal matters (usually very personal) but in an honest, unabashed, enlightening and helpful way. And, so far, I have come across not a whit of the snide, sniping, one-upmanship type of posts that are commonplace on so many internet forums. All very respectful here. Amazing.

Happy to have found this place.

[cincinnatus1951]

Malibog: Thanks for the kind words. If I can help with anything, send me contact info and a convenient time.
cincinnatus

[bldoink]

MotothearRuiz,

It took me a good while to get over the incontinence. I did plenty of kegels. They helped but not enough. Yes, continue the kegels. I guess 8 months before I was mostly recovered in that department.

I solved my major incontinence issue by taking long (for me) walks. I worked up to 4 miles. Start with shorter walks and work up to longer distances. The trick was to walk WITHOUT a pad. I would walk without a pad in my neighborhood (ranchettes). Being out in public gave me incentive to maintain control. Yes, there were times I had a wet spot. Yes, there were times I ran for the bushes. But the method worked. I got to where I could walk 4 miles without a leak.

I still get the occasional leak. If I'm out clearing brush, for example, and get physically fatigued and I'm still working, well that's when some leaks happen. Being fatigued and bending over and picking up some heavy chain, for example, is leak time. Sure, if I was aware and concentrated before that type of exertion I could avoid a leak, but when working that won't always happen. Here in S. FL. I'm usually so sweat soaked by then no one would even notice a fairly large leak. When getting up from a deep seated position it's always a good idea to use caution.

Climacturia was initially a big problem for me. It caused me to do a lot of solo practice. It was initially a very wet experience. At climax it was pretty dramatic. I learned to completely void before sex. That a preventative measure I still take. With much solo practice I learned to control my leakage during the stages of arousal and different pelvic contractions, etc. I eventually learned to keep control of my urine even during climax, which was difficult for me as the effort is verging on causing a "ruined orgasm", but I finally got there. I can now get off while keeping a clamp on the pee, avoiding the water works. Point is you probably need to do a bunch of solo work to get there if your having issue like I did. You need to just lay it out to your wife and tell her you're going to have to masturbate a bunch until you relearn pee control. But hey, if your wife is one of the rare very understanding girls that is very open minded and even likes water works, then act accordingly. My wife is pretty understanding but no golden shower for her.

I've had good luck with injections. I started with Edex cartridges, which are straight alprostadil and saline. Due to the cost I migrated to a locally compounded mono-mix consisting of the same ingredients as the Edex, although stronger. After a few missteps the injections have worked very well for me with no discernible side effects. Well, I did initially have some alprostadil pain but that moderated and eventually went away and is no longer an issue.

I highly recommend trying the injections and my bias is towards alprostadil but whatever works for you. It is in my humble non-medical non-professional opinion that the injections can be good therapy for dick health and possible erection recovery. I think you should start on them right away. No my natural erections never recovered. Too much nerve damage.

If you're still pumping, and you should still be at least for therapy, it is also my non-professional opinion that the pill helps with pumping. It sure helps with me, although the pills do nothing for me on their own.

Pumping works and is better than nothing. When pumping for sex I do need a pretty darn tight ring that is a bit uncomfortable. IMHO injections are way better.

I know of no magical elixirs, or pixie dust. I have bought toys for the wife to help compensate for her putting up with me. We haven't sought therapy although I'd expect a good therapist would have value. Good luck finding a good one.