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Posted 5/2/2014 12:56 AM (GMT 0)
It's likely my nerves won't be spared if I opt for the operation.

How has total ED affected your libido and can you regain the quality of your sexlife with your wife/girlfriend despite ED?

The wife says I'm daft worrying about sex and she just wants me alive but despite that it is a major worry of having the surgery. I realise this subject must be difficult for most.

Edit: Since this thread started I have had confirmation that the nerves will Not be spared.

Post Edited (Ronnie44) : 5/9/2014 5:33:25 PM (GMT-6)

Posted 5/2/2014 12:59 AM (GMT 0)
Apparently off topic per Gedman's post below, so just leaving it as an audit trail.

Difficult yes, Hard no.

Sex will not be the same but modus operandi can be adapted.

Biggest change for us is that with me literally having no libido, spouse must assume my former role of initiator.

LupronJim

Post Edited (LupronJim) : 5/2/2014 8:03:19 AM (GMT-6)

Posted 5/2/2014 1:08 AM (GMT 0)
Pardon me for saying, but I think that LupronJim's response might be confusing. Ronnie asked about non-sparing surgery, and LupronJim is talking about his experience with Lupron.

Non-sparing surgery itself has no direct impact on libido, as far as I'm aware. However, the frustration of having the urge but unable to naturally get erections could cause stress/anxiety which could lead a person to throw in the towel on sex.

Fortunately, there are effective ways for guys with nerves removed to get usable erections. Trimix injections, VED pumps, and penile implants are options that I'm aware of. If there are others, I'm sure more folks will post suggestions here.

Also, check out Dr. Mulhall's book (linked in my signature below). He covers this topic well.

-Gedman
Posted 5/2/2014 2:00 AM (GMT 0)
Thanks for clarifying, Gedman. I added an edit to beginning of the off topic post.

Post Edited (LupronJim) : 5/2/2014 8:03:53 AM (GMT-6)

Posted 5/2/2014 2:27 AM (GMT 0)
Ronnie,

Non nerve sparing because of seminal vesicle invasion? I thought they take those out anyway if you choose surgery. I'm pretty sure I don't have them anymore but I could be wrong. They don't do anything afterwards anyway. I sure do understand your concerns. I'm 7 months out from surgery and still no nerve recovery. Well, maybe some tiny amount recently. I'm hopeful. You have a good wife. Of course living is first. Most surveys say continence is #2 and natural erections #3. I guess I would say the frustrating part about impossible spontaneity is just that. Sex life is not as spontaneous as before. But you can both feel just as intimate as before and feel just as good as before. It just takes more time. Patience is key, as well as understanding that your partner really does still desire you even with this one defect. Believing that is key to recovering from the hit to libido that the emotions cause, independent of anything else. It's hard to feel sexy when you're worried. As the other guys are saying, you don't have to jump one way or the other immediately for treatment. Gather the info first.

Good luck to you.
Posted 5/2/2014 12:42 PM (GMT 0)
Ronnie
I was gl9 and had open RP at Johns Hopkins so my surgeon could feel the nerves for cancer and spare them if possible. He did spare both of them . He also removed ten lymph nodes all negative and seminal vesicles (which are always removed) which were both positive. I don't know your dx but it's not a given that nerves won't be spared. It depends on the skill of the surgeon. I don't know if it's easy to spare nerves with DaVinci surgery. You should discuss this with your surgeon. If he won't attempt to spare them I suggest you go to a surgeon who will at least try to save them.
Bob
Posted 5/2/2014 1:05 PM (GMT 0)
I need to check with the surgeon when I go back to see him in a week but I'm pretty sure he said he would likely not be able to spare the nerves. I need to check on his exact wording because I cannot remember it (eg. 'may not', 'would not', 'might not', 'likely not') to clarify the chances of removing them. It's one of the questions I have written down for when I go back although I don't suppose the surgeon can be sure until he's in there.

They mentioned pumps and viagra to me and I was taking notes but it's not verbatim and there are always more questions you don't think of at the time and other things you want clarified. Where I took it as 'likely' the wife took it as 'may'. Sorry for the confusion.

I did wonder whether I would be even interested in sex afterwards (without an erection) and whether my sex life would be able to return to the quality, if somewhat different, of before.

Thankyou for the advice.
Posted 5/2/2014 1:15 PM (GMT 0)
Hi Ronnie:

There are no easy answers. Although my cancer wasn't as widespread as yours and I was able to have nerve sparring surgery, I didn't know that going into surgery.

I remember thinking that worse comes to worse I'd get an implant. And I thought of it in terms of doing it for my wife more so than for myself.

I never considered the libido part in relation to the surgery as I didn't read anything about it vis-a-vis the procedure itself.I did consider the libido part in relation to the depression and anxiety that took over after my diagnosis. But even with that I remember telling myself that things would get better with time and that it wasn't only about my libido but also that of my wife and that pleasing a woman (or partner) can be accomplished in many ways.

I was one of those guys who probably put 90% of my energy and thoughts into eradicating the cancer and being able to aim for a cure first and foremost. Then came the concerns about incontinence, and finally, about potency.

I was fortunate to have hit scored big on all three fronts but even knowing what I know today I don't think my approach or mindset would have changed.

You could consider alternative forms of treatment that may provide you with fewer short term side effects or even consult other surgeons who may have a belief in their ability to spare your nerves.

Best of luck.
Posted 5/2/2014 1:18 PM (GMT 0)
Ronnie,
You will have all the interest in sex you had before. Even with no erection you will be able to orgasm. Who knew! Right?
You will even feel the usual pulsing when you reach orgasm - only there will be no mess! Read that last phrase again and mull the advantages over in your mind. Now mull it some more.

The Uro is only telling you "mights and maybes" so you will get in the car when your wife giggles the keys and asks if you want to go out for ice cream.

Good luck,
Jeff
Posted 5/2/2014 1:41 PM (GMT 0)
Thanks
Posted 5/2/2014 1:57 PM (GMT 0)
Ronnie,

A surgeon's priorities, in order, are 1) cancer control, 2) urinary continence, and 3) preserving sexual function. He will do what he has to do to give you the best shot at priority 1 and then worry about priority 2. If he has any wiggle room left at that point he will worry about priority 3. Since you are a high-risk patient the gap between priority 1 and 2 is pretty wide. He wants you to understand those priorities going into your decision.

Since you are obviously worried about preserving sexual function (as you should be) let me echo Gedman's suggestion that you check out John Mulhall's book -- Saving Your Sex Life -- and his lecture available as three videos. Gedman has links in his signature (above) so I won't repeat them. The first video of Mulhall's three-part lecture is really useful to show to your wife so she will know what to expect, too. The book is hard to find on paper and if you don't have a kindle it's worth getting one just to read that book.

If you go with surgery it is highly likely that you will want to use pills and pumps for a while after surgery for sex and/or for rehabilitation. Even if your nerves are spared they will usually not work very well for the first six months to up to two years and, during that time, it is important to find some way to have occasional erections to keep the tissues working. All potent men get erections during REM sleep. That's natures way of keeping the hydraulics on line and functional. When your erectile nerves aren't working that doesn't happen and you will need to find ways to get similar 'exercise' while you are awake. (This is one of the things it is helpful for your wife to understand.)
Posted 5/3/2014 11:02 PM (GMT 0)
The Youtube links in Gedman's signature are excellent. Things are explained in a way we can understand.

Thanks again.
Posted 5/4/2014 1:30 AM (GMT 0)
I had seen Dr. Mulhall's videos before I decided on surgery and had decided that I was OK with all the ED treatments up to and (nervously) including injections. I was aware of implants but didn't expect things to get to that point.

I was also aware that a majority of men took more than three months to regain continence but that most men were continent at one year. Again, I was aware of slings and AUSes but didn't think I'd wind up going there either.

One thing that sneaked up on me -- something I should have understood but didn't -- was the degree to which incontinence trumps potency. If you leak badly enough, nobody is going to care what the leaky, smelly little guy is capable of. So while you are worrying about your sex life don't forget to fret just a bit about continence issues, too.

The other thing that sneaked up on me was my unfortunate post-op pathology report. That added two more treatments to my plan -- radiation and hormones, each with their own contribution to the side effects -- and now I am looking at both an implant and a sling. I remain both determined and confident that I can bring my sex life back online. But I'm gonna have to work at it.

Hopefully, you won't get as far into the contingency plans as I have but you should take comfort, of a sort, from the number of fallback options available.
Posted 5/9/2014 1:18 AM (GMT 0)
Hey brother I'm 44 also and had surgery 31March2014. Let me know if you have any questions post op. Take it easy.
Posted 5/19/2014 9:05 PM (GMT 0)
There is part of this whole trip that I had never been mentioned to by a Dr. One piece of the puzzle that the Dr never asks and doesn't seem to care. "How are you feeling?" As in, what is your state of mind. Thats the piece if I had one complaint is they should ask that question fairly often.

I was angry after about a month about my progress.

INCONTINENCE, why can't I control myself, I am a grown man, leaking all over the place.

ED, the one bright spot was the 'semi' while I still had a catheter in, painful, but worth it.

LIBIDO, I don't know what happened with that. appartently on some of us T level tank after surgery. Something about the hormone system being a feedback system. Whatever. Mine is starting to recover but I still don't have the 'desire' I had presurgery.

How much of that is mental I often ask myself. Its freaking annoying not feeling like a man anymore for me. I started seeing someone especially after I sat back and said to a friend. "If this is life, you can have it"  there have been times that I have thought. If I knew then what I know now I think I might have just rolled the dice.

This was the mindset that made me go see someone. I really still do feel like I am the only one that feels this way at times.

 

Posted 5/20/2014 2:42 AM (GMT 0)
 

Navy Chief

   You have got to be kidding-- I'm tortured everyday of my life...   I wish you could have seen my fiance she was amazing in every way a women can be--- She stayed 16 months after the biopsy and then it was to much for both of us--- ED sucks when you know it was brought on by a surgery-- losing the best part of your life is tough--

You are not alone by any means!! Then the Peyronies after the trimix that was the breaker for me--- Just know that a lot worse could happen-- It is not the fact that your not acutally having sex as it is the fact that you can't get it up -- I could go without sex but knowing that I can't perform is the real heart breaker for me--- takes away the feeling of being a man in that regards. Maybe it makes you look at yourself in a different way--- Hang in there your not alone--

Posted 5/20/2014 3:04 AM (GMT 0)
Oh, I have to say, most of my side effects have gotten quite manageable with the exception of the LIBIDO. That one hasn't every really come back fully. The occasional stress dribble is not a big deal. ED is not awful with pills. It isn't like it was but I guess you just learn the new normal so to speak. You can always get creative in the bedroom but without the desire its tough to motivate yourself. Wife is never happy about always being the one that initiates.
Posted 5/20/2014 3:08 AM (GMT 0)
Hello

I think the frame of mind makes all the difference in the world with women around the ED, libido, etc. I had the surgery in 2008, did the injections, developed PD, went through RT and am winding down after my 3 cycle of Lupron.

In the meantime, I have developed relationships with six beautiful, slender, sexy women who see me on a regular basis. Being 65, I have taught them all alot about using vibrators, kissing, etc. I am planning on an implant in 2015 and of course, they can't wait to experience that. All of them tell me "my swag" is off the chart, lol.

A positive frame of mind makes a huge difference in intimate relationships.....

Posted 5/20/2014 4:29 AM (GMT 0)

NavyChief said...
There is part of this whole trip that I had never been mentioned to by a Dr. One piece of the puzzle that the Dr never asks and doesn't seem to care. "How are you feeling?" As in, what is your state of mind. Thats the piece if I had one complaint is they should ask that question fairly often.


I was angry after about a month about my progress.

INCONTINENCE, why can't I control myself, I am a grown man, leaking all over the place.

ED, the one bright spot was the 'semi' while I still had a catheter in, painful, but worth it.

LIBIDO, I don't know what happened with that. appartently on some of us T level tank after surgery. Something about the hormone system being a feedback system. Whatever. Mine is starting to recover but I still don't have the 'desire' I had presurgery.



How much of that is mental I often ask myself. Its freaking annoying not feeling like a man anymore for me. I started seeing someone especially after I sat back and said to a friend. "If this is life, you can have it" there have been times that I have thought. If I knew then what I know now I think I might have just rolled the dice.



This was the mindset that made me go see someone. I really still do feel like I am the only one that feels this way at times.

Yep, know what you mean, Bro. In my case, I still have plenty of libido. But thinking about it every day like I am 20 just amounts to torture, when I can't do anything normal about it, between the incontinence and total ED. At not quite 3 months out, more surgery for slings/AUS/implants are none the less sounding way more attractive. What would help my outlook even more is if I had all this surgical trauma for a good reason. The idea was that IF my PC was contained like the surgeon felt that it was after his DRE, then I could be offered a cure. But it wasn't. With 1 focal area in the margins(not clear) and seminal vesicle involvement, not shocking to find with a G9 + PSA 10.9, I have no better than 50% chance of a long term cure. Surely I could have done that well with seeds and EBRT, with most likely- though not guaranteed- far fewer side effects.
Posted 5/20/2014 6:52 AM (GMT 0)
Billy bob,

   Your post was an inspiration to me to get going in a different direction -- Thanks

Posted 5/20/2014 4:34 PM (GMT 0)

bigal said...
Billy bob,
Your post was an inspiration to me to get going in a different direction -- Thanks

BigAl,
I am glad to hear that you got some inspiration from my post, as I would really like to be some help to folks when possible. But I didn't really think there was that much positive vibe in my post. Seems to me I was closer to *****ing and feeling sorry for myself, something that is entirely too easy for me to do. smilewinkgrin

Maybe you meant HB2006's post, right before mine, about how much a positive attitude has helped him? That seems sort of inspirational to me, and I need to take a hint from that PC Bro!
Posted 5/20/2014 10:49 PM (GMT 0)
..I am a part of this crew too. I have actually been chastised for my rants while some times hijacking posts with this subject, unintentionally of course, sorry guys :) This ed thing is a real mind blip, it really hits so deep below the belt. I find it hard to sum up into words my disappointment. Fighting cancer is one thing and all that implies. Ed, though a side effect of or from treatment for us young guys in our prime seems to have more impact then the cancer itself. All of this is quite odd and challenging. One must really search hard with introspection to overcome. Man is this hard my brothers.. The older guys always come back with, "There are many ways to treat a woman." Yea, yea of course I know that after all I'm a lover not a fighter*, but do I miss the sleigh rides, the rocking the boat, the smashing it up excitement, nothing can take its place. But I and we have got to remember that this life moves in mysterious ways and nothing stays the same. First off I am thankful for having the very loving sexual experiences I have been blessed to know. Now, I must adapt persist & overcome like an American Rifleman should. Head up chest out give praise to God for life and what's left, and live with Strength & Honor..

* Like the American Rattlesnake will strike if provoked.

.........Appleseed.........

Post Edited (Appleseed) : 5/20/2014 5:07:28 PM (GMT-6)

Posted 5/22/2014 5:32 AM (GMT 0)
 

Billy Bob

   Your right -- HB2006's post --- Thanks HB2006 for the inspiration!!!

Big Al

Posted 5/22/2014 1:04 PM (GMT 0)
I am 63 now and 7 years post op, and I have no ED issues what so ever , and I can get rock solid erections 24/7 with some manual stimulation and without taking any drugs.  My problem is I have ZERO libido. 

Prior to surgery, I wanted to have sex all the time,  and  had desires from only to look at a woman naked or think about sex.  After surgery, my desires went to ZERO.  People say it is all mental, but I don't think so.  The week before surgery I was having sex every night  with my wife, and a few months after surgery , I had no desires what so ever for sex. Something happened during that surgery.  

A few years after surgery, I had my testosterone checked and I was at 400 which I think is normal for a man of my age, so I don't think that was my problem, but still I had zero libido.

To this day, 7 years since my surgery, I still have ZERO libido. I can look at naked women 24/7 but I get no desires.  On the hand, I can still get a rock solid erection with manual stimulation, and every morning I wake up with an erection.  I just don't have any desires for sex anymore.  The sex I do have with ny wife, I have to force myself to do it. I enjoy it while I am doing it, but I don't have desires to do it. 

 

Posted 5/22/2014 3:13 PM (GMT 0)
New York,

We are all just full of advice here for men with erectile dysfunction but are less helpful with libido problems after treatment.

Ultimately, of course, it is all in your head. We have guys here who have satisfying sex lives who have total ED and guys who manage to keep it going despite being on drugs that drive their testosterone to near zero. I'm not minimizing the problem of post-surgical ED or drug-induced hypogonadism (I have both, currently, and I can assure you they suck mightily) but if you can get your head good with the program it doesn't matter what your dangley bits do.

There are some guys who say "I have no libido so I don't get much sex but that's OK because I have no libido." Every time someone says that my next question is always "Really? Are you sure you're not lying to me?" because low libido bothers the heck out of me. You sound pretty grouchy about it yourself. So there are a few things you might consider:

1) There are other possible medical causes besides low testosterone. Certain drugs have sexual side effects. SSRI antidepressants, for instance, can make orgasm difficult and unsatisfying. That can make sex seem like hard work.

2) Quite a few guys find that they miss ejaculation more than they expected they would. After prostate surgery they need to try to find other aspects of the experience that excite them. Some guys find that difficult.

3) Similarly, surgery can make orgasm less intense and, again, sex can start to seem like a lot of work with a rather small payoff.

4) There are therapists who can help you with some of these problems and your doctor may be able to help with others.
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