New Member from Central Florida

[Burt-Man]

Hello all,

I have been following this site for about two or three months now, and although none of us are professional doctors, it sometimes seems like we make more sense than the professional doctors. I would have to echo the response, if I would have known the outcomes of my RP, I would have contemplated my chances of the prostrate cancer being the death of me.
I had my RP in August 2021, and the doctor never mentioned anything about Penile therapy after the operation. He just casually mentioned for me to get a VED and a cock ring off of the Internet, and prescribed Viagra. Said to take 60 mg twice a week.

Below are my issues:
ED
Peyronies disease ( within the last 12-16 months)
Climacturia, also known as orgasm-associated incontinence.
And overall penis length shrinking.
But my PSA has been zero for the last two years, so I am living to talk about this experience.

Just trying to bounce this off of the members of Frank Talk..

Currently, I am living in Florida, but travel would not be an issue for me.
If I treat each of the symptoms separately, it may take me a few years to resolve all of my issues, if that is actually possible.
Or should I just skip to the chase, and make an appointment with one of the providers listed below and become a “bionic brother”???

Dr Clavell Houston Texas
Dr Hakka Atlanta Ga
Dr Perito Coral Gables Fl
Dr Carrion Tampa Florida USF Health

I have tried the generic Viagra, Cialis, and just 2 months ago, began injecting
0.10 cc ( very little) Trimax at a blend of 25/ 25 / 1
My erection seems to be better with the Trimax, but the Peyronies disease and the leaking is still making things difficult.
BTW…. I have a phone conference with Dr. Hakky’s group at 8:00 AM tomorrow.
Thanks all,
Burtman

[Lawnman]

Sorry to hear about your issues.
What to do? I am sure most of us struggle with the proper answer.
I had an RP almost 2 years ago. I was warned about what was in store, but I wouldn’t believe it. I should have. Would I have done anything different had I known I would need injections? Probably not. I’m alive, my PSAs remain undetectable. I hope they stay that way.

My situation is not complicated by peyronies. Injections work, so I’ll keep with them. I can function. Certainly not how I used to. I do deal with significant size loss, and occasional climacturia.

As I understand it, going bionic is permanent. I can’t speak to what it is like to have an implant. I’ve had enough surgeries in my lifetime, and right now, I’m not in a hurry to have another one.

I guess it all comes down to your own situation, and how you think is the best way to deal with it. No one can tell you what to decide, as you already know. Read what people on this forum have experienced, give it some thought, and proceed from there.

Remember, you’re alive. You made it past the first hurdle.

[bldoink]

This post is way too long. I'll try to reduce it later.

I’m not a medical professional of any kind. Anything I post is based on my own experiences at best and hallucinations and or delusions at worst. Always remember, internet forum advice is likely worth what you paid for it or worse. Always ask your doctor and follow his/her advice.

Hello all,

I had my RP in August 2021, and the doctor never mentioned anything about Penile therapy after the operation. He just casually mentioned for me to get a VED and a cock ring off of the Internet, and prescribed Viagra. Said to take 60 mg twice a week.

Welcome to the forum.
That sounds similar to my experience with my original Uro, the one that discovered my cancer. He wasn’t really much help in the ED department. He didn’t even do my first injection. He gave me the script and told me to read the package insert.

Below are my issues:
ED
Peyronies disease ( within the last 12-16 months)
Climacturia, also known as orgasm-associated incontinence.
And overall penis length shrinking.
But my PSA has been zero for the last two years, so I am living to talk about this experience.

What little peyronies I have I developed during a time when I was abstaining from all sexual activity in the hope of regaining some sensitivity. I also failed to do VED therapy during that time. You have to keep that thing exercised somehow. It should go without saying that the therapy prevents or reduces size lose too. And yeah, getting rid of the cancer is #1.

……If I treat each of the symptoms separately, it may take me a few years to resolve all of my issues, if that is actually possible.
Or should I just skip to the chase, and make an appointment with one of the providers listed below and become a “bionic brother”???…

I think some of your issues should be considered and in some cases treated separately. Size lose should be addressed separately. And IMHO climacturia should be addressed separately if a non-surgical solution is desired and probably even if a surgical solution is required.

If or when to graduate to the final option of implant is an individual decision that should be made by you and your spouse (if applicable) in consultation with your doctor. Please take into consideration any prejudices your doctor may have.

I have tried the generic Viagra, Cialis, and just 2 months ago, began injecting
0.10 cc ( very little) Trimax at a blend of 25/ 25 / 1
My erection seems to be better with the Trimax, but the Peyronies disease and the leaking is still making things difficult…..

The pills can sometimes aid other methods even when they produce no erection on their own. I find they most certainly boost my VED efforts. They also boost my injection response. That is my experience with Viagra, although, for all practical purposes the pills are a total failure at producing an erection by themselves. Please consult your doctor before stacking pills and injections.

Your tri-mix formula is a bit unusual to my understanding but is on the weaker side as is your dose. You don't appear to have any adverse reactions to alprostadil (PGE1) so you could even consider an alprostadil mono-mix if you wanted.

Below I’ve copied and pasted some old posts I’ve made on some of your concerns. I did try to edit the mess to remove redundancy and add clarity but a lot more editing is in order, sorry. Please remember this is just my own thoughts and opinions and I have no professional training or expertise – NONE.

It can take a pretty good while to settle in to your new normal after an RP. My RP was supposedly nerve sparing. But I've never had any sort of natural erection since. My doctor started me on Viagra but Viagra produced no erection. He then started me on a VED which I wasn't overly thrilled with for sex purposes. However, I believe it was very helpful for penis health. If you're not using one I'd get one and start using it for therapy immediately.

My doctor then put me on Edex injections. Initially they would just give me a little useless chubby. I worked up to the Edex 40s before I got a fairly useful but painful erection. During this time I was slowly perfecting my injection technique. I was combining the Edex with Viagra to get results. About this time my insurance quit covering Edex or Viagra. Without insurance coverage for me Edex is cost prohibitive. And to top it off my urologist doctor retired.

This left me lost. I did research and called compounding pharmacies. I discovered one about 40 miles away that would make an Edex substitute far cheaper than Edex. I talked my GP or Primary into writing me a script for an Edex substitute but twice as strong as an Edex 40 so I wouldn't have to use as much. I also got a script for generic Viagra and started ordering it through Canada as it wasn't available elsewhere at the time. It's worked out well.

While my first real injection success was using a full Edex 40 with Viagra I've now perfected my injection technique and it seems my dick decided to become more responsive to the injections as more time passed since the RP. I did continue therapy with the VED so that probably helped also. Don't get me wrong. I still get no natural erections and I also get no erections with pills. I have learned that the pills do make using the VED a lot easier. I'm now using about 15 units of my 80mcg/ml mono-mix Edex substitute for a useful boner. That would equate to about a third of an Edex 40 or less than half of an Edex 20. That's a big change from where I started. I will use a little more juice sometimes if I want a steel rod.

I no longer need to boost the injection with Viagra although I still do sometimes. I do use novelty/sex shop cock rings. The rings allow me to use a little less injection juice. Plus the wife likes them.

With solo practice I was able to get the injection stuff sorted out without the pressure of performing with an unreliable erection. I think there is some real benefit to some solo practice with the injections while you get it worked out. That way, when you do get it all sorted out, you can proudly bring that hard dick to the party with confidence. You just have to tell her you're going to have to do some solo chicken choking until you get it sorted out. There may be some women that are game enough to be with you and encourage you through all of the trials, errors and disappointments during the learning curve without getting frustrated. They are rare. And yes I realize some guys have much easier times with this stuff and everything just falls right in line. I'm very happy for them. That's not the case for everyone.

The point that I've taken so long to get to: While your initial response to injections my not be ideal it can substantially improve. I firmly believe a lot of it was due to some continued penis recovery from the RP. The first year didn't really contain much as far as satisfactory experiences. Year 2 was much better. I also think a lot was due to improved injection technique. But I most certainly do not require the same dose of injection juice I did initially.

For most of the first year or so (I don't really remember how long) I had some real issues with climacturia (orgasm-associated incontinence). Until I got a handle on that I didn't really invite my wife to that part of the party. There were other substitute methods used to try to satisfy her (oral, toys, strap-on), but she's never been into water works. This resulted in a good deal of solo work by me during which I learned to control the climacturia, which with practice can be done.

Having a good erection, by any means, can reduce the climaturia, but not necessarily. Try to educate yourself with some research. A quick DuckDuckGo search turned up a number of hits. This one was on top: https://www.issm.info/sexual-health-qa/what-is-climacturia-how-can-it-be-managed?highlight=WyJjbGltYWN0dXJpYSJd. Educate yourself some.

But oh well, back to my climacturia experience.

Anyhow, when I did have orgasms there weren't little dribbles of pee. I was shooting jets of it with force. My wife wasn't in to golden showers. What was I going to do? Practice! Yeah I was choking that chicken a lot. I started by clamping down on the kegels and other pelvic muscles at the start of the "O". This would then stop the pee, mostly, but also ruined the "O". Darn it! Well I continued to practice and got to where I could clamp down and hold the pee, mostly, if I concentrated and still get some pleasant "O" sensations. But sometimes I'd just let er rip just so I could get a good one.

Again, practice! You can learn to restrain the pee, even when you have the O, which is the toughest part. Yes, initially when I'd cum I'd shoot pee even more than I did cum pre-surgery. You can learn better muscle control as your muscles strengthen. It will get better. It may take awhile though. I did a lot of chicken choking before I was ready to bring it back to the wife. It’s always a good idea to pee beforehand and even to restrict fluid intake beforehand. Hang in there it will get better. It's still early.

What followed were many sessions that were, for all practical purposes, edging sessions although I didn't know to call them that. These allowed me to slowly gain control of my urine leakage. The other half of that problem was that even when able to control leakage during edging, an orgasm was a very messy thing. There's no other way to describe it other than spurting urine. Much continued "practice" enabled me to eventually gain control of this and learn to "O" without the waterworks.

Well practice continued. I strangled many a chicken. I eventually got to where with little concentration I could clamp down sufficiently to avoid the waterworks and have a fairly satisfying "O". But eventually I got to where I could clamp sufficiently, out of habit with little to no concentration required, and have a very good and sometimes great "O". Then I took it to my wife. Prior to that she just had to understand that some "therapy" and learning had to take place. Well if your girl likes golden showers I guess she could join you in the process. My wife is pretty understanding but that would have been a bridge too far.

So what was going on. Well part was strengthening and training my pelvic muscles. Part of it was learning to balance the necessary pelvic tightening while allowing the contractions involved with an orgasm and part was just developing habit and routine to the point of it becoming natural.

The solo work practice is what I've described as a type of edging or ruined orgasms'. It's a matter of getting to the point of no return and then doing a very hard kegel clamp which ruins the orgasm and stops any urine spurts. One member told me the method was more like a MMO technique (Multiple Male Orgasm). I guess so but I don't really know anything about MMOs. The trick is that by doing this practice I learned to control the kegel to the point that I could clamp down enough to restrain any pee while still actually having an orgasm. I guess I learned to individually and separately control the relevant muscles. This didn't happen overnight and took a lot of practice. It now takes very little effort for me and the kegel clamping is almost automatic. This technique will work if you can master it.

As our play time is now always planned, I avoid fluid for an hour or so beforehand. I also always shower immediately beforehand for a couple of reasons. The relevant reason for this discussion is: At the end of my shower I will use some slippery shave gel, Avon Skin So Soft (discontinued) to jack off my limp noodle for a couple of minutes. While it unfortunately remains limp, I do get the arousal feelings in my pelvic area with the associated mussel contractions (No, not orgasm contractions). Sometimes I actually feel like I'm getting erect until I look. Oh well! Anyhow, this prompts me to void my bladder (sometimes involuntarily) of whatever remains that I wasn't able to void normally. This leaves me ready for play time without the added undesired (for us) water sports. This method works well for me/us.

As a side note, after the RP I did have serious general leakage issues for a good while. I learned to control my general incontinence by going for walks with initially little protection and then no protection. That gave incentive to not pee myself. There were a few times I had to run for a tree or bush, but it did work. Sometime I did arrive home with a wet spot. But I kept at it. I got up to 4 miles without peeing myself. I consider that pretty good.

I've plateaued at a point where I use no protection but do have occasional small leaks, not daily but one or more per week. Most often they are related to types of sudden exertion that cause muscle contractions that force a very small dribble. If I remember or anticipate I can consciously clamp down and prevent that issue. Also, if I'm out on my property doing hard manual work and get very fatigued I'm more apt to have a small leak while exerting. Of course no one would notice as my clothes are sweat soaked by then. Overall it's not a big deal and causes no social issues but it (1. is a bit of a pisser) (2. does piss me off) at times (Your choice of bad puns).

If that was TMI I'm sorry. But for some of us RP guys some semblance of recovery is a pretty big challenge, but in most cases it's achievable.

That's my sorry ass way of working around the effects of the RP but it does work. I can't think of any reason the relevant parts wouldn't work for any RP cancer survivor, implanted or not. I suppose there are those RP cancer survivors without such issues. Lucky guys!

I don't know about the right or wrong of masturbation in general. I also don't know about any benefits of masturbation for ED in general. I do believe it was essential to what recovery I've achieved in sexual function and activity, being a prostate cancer survivor (so far) and having had a RALP with some nerve damage. Don't get me wrong, I still have no erections without injections or at least pumping with a VED (with ring) assisted by viagra. Viagra by itself only makes me a little fuller with stimulation. So there's been no miracle cure.

There may be wives or partners that would be right there from the beginning helping out in spite of dead dick, all of the water works and frustration but I doubt there's many. If you have one of those you had better make her feel appreciated and loved and pay it back somehow. Either that or lock her in a room so she can't get away.

I realize my experiences are not universal, but I don't think they're unique either. I know this has been TMI for some, sorry. The bottom line is, not taking moral considerations into account or ED caused by any other issues or even possible negative side effects, I think masturbation was essential in my recovery, such as it is.


Edited: Mainly for several typos and a bit for clarity.

[Burt-Man]

@ lawnman…… Thanks for your response..
Burt-Man

[Burt-Man]

@bidoink….. Your response wasn’t too long and provided much good information.

I am heading on a vacation next week, and plan to discuss all issues & solutions with wife.
Also I had a conference call with Dr. Hakky this week and plan to visit his office in person in Atlanta next month.
Hope to get some clarification on the Peyronies and Climaturia in person.

thanks all,
Burt-man

[RJ_in_Pa]

@Bldoink - great post. I could ‘ditto” some of your experiences, especially the ones about leakage while working in the yard. I’m walking about 2 miles now without leakage (or protection). You gave me that advice awhile back. One thing that really destroys me is having drink or two of alcohol while doing something, like playing pool I still have to wear a full pad during those types of situations. I was doing pretty good pacing myself at a recent Super Bowl party and then it went into overtime. One more drink and the flood gates opened up. What’s crazy is during those times, I can have a completely empty bladder and still be leaking. Ugh!

Back to ED - I’m starting think that solo sex is helping. I can get a much greater “O” by myself than while having sex with my wife. I do VED therapy every other day and thinking solo sex is a nice reward for my time and effort. Your thoughts on how often is beneficial?

[bldoink]

I do VED therapy every other day and thinking solo sex is a nice reward for my time and effort. Your thoughts on how often is beneficial?

If you're talking solo sex in an effort to learn how to control climacturia then I think as often as is feasible for you. If you're talking VED therapy, then within reason I'd say the more the merrier. If you're talking general solo sex then I'd say if it's effecting your enjoyment or performance with your wife then It's too much, so back off.

As far as cranking one off while doing VED therapy, well, for me it's hard difficult to lube it up and then pump it up for therapy and then not have a strong desire to finish. If you find you're solo activities are interferring with your wife intimacy time then you need to back off on the solo activities. How you can continue daily pumping up your then lubed dick for therapy but not crank one off at the end, well I don't have an answer there.

That was pretty long winded for a non-answer wasn't it!