Need Advice, problem with orgasms after prostatectomy

[alibaba]

I was told it takes 2 years for the nerves to recover also. I am 5 years 3 months post op. Did not have nerve sparing and records obtained in 2012 show they were removed ( in the pathology report showing cancer was in the nerve). Oncologist kept telling me that it takes 2 years for nerves to recover but since there are no nerves. nada. urologic surgeon told me they used to snip the nerves to prevent premature ejaculation but in 60% of the cases the nerves would regrow over time and reconnect so they don't do that surgery any more. Give it time. If there is anything I have learned about a prostatectomy, it all takes a jolly good lot of time. Not weeks, years.

[alibaba]

If this helps, the nerves cover the outside of the prostate like the skin on an onion. to save the nerves they peel the onion. Everything gets squashed, pulled, stretched and tugged on then when they whack out the prostate and reconnect things, they get kinked. In most nerve sparing cases, they only save one side and just whack the other so they can peel the onion. Poor things need to recover.
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[Andy425]

Limpjoint-
Sounds like I better get used to sex being totally different and not so great. Not what I would like to hear.
I didn't like any of the options I knew about for my PC (surgery, external radiation, or cyberknife). However, I wish I had known back in July about Focal Laser Ablation (FLA). It sounds like an excellent way to go to deal with the PC, and still have some sex life afterward. I just discovered info about FLA a few weeks ago; too late for me! I had Extra Prostatic Extension (EPE), so I wonder if I could still have used FLA. First, would the cancer have been detected with these new types of MRI, and second, could FLA zap the cancer beyond the prostate? Does anybody know if FLA works for someone with EPE?

Javon: What I learned about prostate cancer (the hard way, no pun intended). As with most things in medicine, very few things are black and white:

The first uro I had told me that the side effects (incontinence, ED) would be approximately the same no matter which treatment I chose. With surgery the side effects would be immediate; with radiation they would come on gradually.

The Davinci robot is much more accurate than the old "open" surgery for prostate removal, and it is easier to avoid the nerve bundles. My second uro (who operated on me) said that they cannot see the nerve bundles, but they know where they are. There will always be SOME nerve damage no matter what.

Prostate cancer cells (or any cancer cells?) migrate to nerves very easily. So with someone like me, who had a tumor that was close to one nerve bundle, they removed all of that nearby tissue ("going wide," as they call it) to err on the side of safety -- hopefully removing all possible cancer cells. So no matter how well I heal up, I will never have more than half of the nerves I'm supposed to have.

So until some doctor tells me that one method is far better than another method -- as regarding nerve damage, better chance of cancer cure, etc. -- I guess we should assume that the method of treatment doesn't make that much difference in the long run.

Just to mix things up a bit: My 70 year-old neighbor had open surgery in 2000. They spared both nerve bundles (and he is sexually active) but the cancer has come back twice. He is now on hormone therapy because there isn't anything else they can do for him. However, his PSA is undetectable, he looks and feels good, is as active as he wants to be, but he knows what the score is.

Would you rather be him? I wouldn't I guess -- I would rather be cancer-free (so far) but sexually dysfunctional.

Like life in general, it's all a crap shoot. There are no clear-cut answers.

[alibaba]

javon, I beat myself up for 2 years saying if I knew what it was going to do to my life I would never had had the prostatectomy. was orignally to have nerve sparing too. with the PSA going up 3/4 point per week and all samples having cancer in all 4 lobes, I would probably have not been alive now but finally had gotten back to a decent life before the prostatectomy. Certainly not the way I expected ife to be at 49 years old. Dr Eid sent me a note telling me that had I not done it, I woul have died a very painful death. urologists kept telling me when i do have orgasms ( before any admitted they went wide and took all they could find in surgery), that they would be short "feelings" that might be intense and would only last for about 1 second. Completely dry. It took me a good 4 years to come to terms with the way life is now. At this point I would do it again because I still have to take care of wife. If I were not here, who would? I know it is frustrating but it sounds like you have a better chance than some of us if you just give it some time. The smell of your cum, the 3 minute orgasms, that is over for some of us. Sure we miss it but I know one guy that went through hell for 19 months but now says everything is great. d

[javon99]

Thanks for all the comments! There seem to be a lot of us in similar situations. I think I am feeling like you, alibaba. Maybe I can get used to things and stop beating myself up sooner than 2 years. All I know right now is I get panic attacks every day when I realize I may never ever get back to the pre-surgery "normal". Even though I asked the doctors lots of questions beforehand about various treatments, I never got a true picture of how awful things would be! Despite Cialis, a VED, and injections, there is no way to get a full erection. What I do get seems to be tied to various kinds of pain. Orgasms are almost impossible, and last about a second at most. Combine a partial erection with an orgasm? Forget about it! Regular sex? Forget about it! This new world we live in after prostate surgery is totally bizzare! Always, the answer is "give it more time". I am now 16 weeks and 5 days post surgery, and 18 to 24 months (or even longer) still seems like an eternity! I think I need to start counting months, not weeks.

I have also heard that in the end, all the treatments end up with about the same level of side effects. However, I often wonder if it would have been easier to take the gradual reduction in ED with external beam radiation, rather than the instantaneous flip into nothingness from surgery! I try to convince myself that getting the cancer out with surgery will lead to a better future that is more likely to be cancer free. However, even though my pre-surgery "performance" was excellent, my age (71) would predict that I will be less likely to regrow the nerves than a younger guy.

Right now, if I could still have mind blowing long-lasting orgasms without an erection, and was told that is as good as it will get, I think I could live with that. If things worked out the other way, and I could have great erections that last for hours (perhaps with an implant), but absolutely no possibility of orgasm, that would really suck!

[Andy425]

Thanks for all the comments! There seem to be a lot of us in similar situations. I think I am feeling like you, alibaba. Maybe I can get used to things and stop beating myself up sooner than 2 years. All I know right now is I get panic attacks every day when I realize I may never ever get back to the pre-surgery "normal". Even though I asked the doctors lots of questions beforehand about various treatments, I never got a true picture of how awful things would be! Despite Cialis, a VED, and injections, there is no way to get a full erection. What I do get seems to be tied to various kinds of pain. Orgasms are almost impossible, and last about a second at most. Combine a partial erection with an orgasm? Forget about it! Regular sex? Forget about it! This new world we live in after prostate surgery is totally bizzare! Always, the answer is "give it more time". I am now 16 weeks and 5 days post surgery, and 18 to 24 months (or even longer) still seems like an eternity! I think I need to start counting months, not weeks.

I have also heard that in the end, all the treatments end up with about the same level of side effects. However, I often wonder if it would have been easier to take the gradual reduction in ED with external beam radiation, rather than the instantaneous flip into nothingness from surgery! I try to convince myself that getting the cancer out with surgery will lead to a better future that is more likely to be cancer free. However, even though my pre-surgery "performance" was excellent, my age (71) would predict that I will be less likely to regrow the nerves than a younger guy.

Right now, if I could still have mind blowing long-lasting orgasms without an erection, and was told that is as good as it will get, I think I could live with that. If things worked out the other way, and I could have great erections that last for hours (perhaps with an implant), but absolutely no possibility of orgasm, that would really suck!

Javon: Nobody ever told me how bad ED would be either, not to mention that it could be permanent to one degree or another. It was a problem I never really had until after PC. Before I even had a biopsy, my uro's female assistant was talking about incontinence and ED, and said "We can fix all that now." LOL, and I believed her. Oh well, we live and learn.

As for time, IMO, don't bother measuring months, use quarters. You might be able to notice some change in a quarter year.

[alibaba]

Time is tough, especially when you don't know how much is left. I have certainly brought up quality of life the last couple of years and plain told a couple of docs no to surgery because there were no guarantees to improve the quality . It did not take me too long to figure out after the surgery that the docs were like used car salesmen telling you the car is great even though it is going to turn out to be an oil sucking piece of shit but they can fix all of that by selling you lots more surgeries like they are were window and seats options. After 5 years to get the nerve for a dick implant, I look forward to it. Even though there seems to be no fix for the orgasms and lack of cum,pain when you don't expect any, peeing yourself at all the wrong times, at least my wife and I might have something new to play with again. The people who kept telling me there are other ways to get your jollies might have a different story it they had been through this shit. Hang in there buds. At least we are proving we are some tough s.o.b.s. When I was ready to give up, our son gave me a pep talk telling me I was the toughest person he had ever met. I'll be damned before I'll prove him to be wrong.

[Andy425]

Time is tough, especially when you don't know how much is left. I have certainly brought up quality of life the last couple of years and plain told a couple of docs no to surgery because there were no guarantees to improve the quality . It did not take me too long to figure out after the surgery that the docs were like used car salesmen telling you the car is great even though it is going to turn out to be an oil sucking piece of shit but they can fix all of that by selling you lots more surgeries like they are were window and seats options. After 5 years to get the nerve for a dick implant, I look forward to it. Even though there seems to be no fix for the orgasms and lack of cum,pain when you don't expect any, peeing yourself at all the wrong times, at least my wife and I might have something new to play with again. The people who kept telling me there are other ways to get your jollies might have a different story it they had been through this shit. Hang in there buds. At least we are proving we are some tough s.o.b.s. When I was ready to give up, our son gave me a pep talk telling me I was the toughest person he had ever met. I'll be damned before I'll prove him to be wrong.

Regarding your comments about doctors:

My uro is the head of urology at a large local hospital. I was incontinent for over three months post RP, and during that time I didn't give a damn about anything other than stopping the piss.

I had an appt. with him while this was going on and he actually asked me if I wanted an implant. I could hardly believe my ears. IMO it is absolutely unethical to even suggest something like that at such an early stage. At some point well after a year, maybe. And of course he knew that because he told me during a later appt. that I had "plenty of time" left before I should expect much sexual function.

Because of that, and a previous neck surgery that turned out to be a waste of time, I have very little respect for doctors. And before all this I had nearly total respect for them. They have no one to blame but themselves.

[javon99]

Andy and Alibaba-

Yes, I heard all about how the doctors can fix the side effects from RRP! Slings and artificial sphincters for incontinence, implants for ED. Not to worry. If you don't get better, we can fix it. It was very reassuring at the time, since the cancer was foremost on my mind. Now, I would ask what extra great side effects do I end up with from these added surgeries? No matter what, things will never be normal again. Not a peep about orgasm issues. No way to fix that problem! I saw one posting of a guy with daily progress photos of his recovery from an implant. I've never ever seen such gross deformity before and would probably pass out if it were me! Ultimately, he was happy with the result after many weeks of recovery.

I was fortunate in one respect: my incontinence only lasted a month. No pads after that. I do still have a drop or two stress incontinence with a bad sneeze, though. Home free on that front, or at least that is what I thought until my first post-op injection. Got a partial erection, a LOT of pain from the Prostaglandin, and near total incontinence! What good is a partial erection, that dribbles so much that you have to stand over the toilet for a couple of hours, waiting for the erection to go away? Same answer as always: "give it more time, and it will get better".

I think I will still go with month to month counting for now. All I have to be able to do is count up to 24 and everything should be well, right??? I'm already up to 4, so that's not so bad..... Looking at it another way, we're talking about TWO YEARS, which sounds like forever! And, of course, no guarantees there will ever be any improvement. However, I'm still determined to beat this thing, one way or another.

[Andy425]

Javon: As for counting . . .

I'm 2.5 years out, only have half my nerves, and cannot get a useable hard on. Cialis helps some but the side effects aren't worth it. The needle works but it's stupid and silly.

So, I avoid women. Given my situation, it's just easier.