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Medical Forum / Diseases and Disorders / Prostate Cancer / December 2006

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need more annonomous responses to pbms with orgasm after RLRP

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gary - 05 Dec 2006 06:52 GMT
this is a 2nd post to solicit more responses to my previous post about
problems with orgasm after RLRP.  this chat room seems to be the only
place i am able to get honest responses to my questions since we can
remain annonomous.  it is a very private topic that i can only discuss
with my wife and doctor.  i am sure i am not alone and i am looking for
others who have gone through this to discuss it annonimously.  the
problem is that i am hardly feeling the orgasms 5 weeks after my
surgery.  i feel it approaching but i'm not sure it happend until after
it's over. i would like to hear from other's who had or are having the
same experience.  i would like to know if it was or is temporary and is
going to get better or am i stuck with what i have.  i got a mixed
response in the previous post.  i would like to hear    from more to
see if i can get a greater consensus. my incontenence has improved from
wearing a diaper t to using a pad 3 times a day.  i still have ED, even
with 50mg of viagra.  please share your experience and opinions so i
can know the truth.
gary
Buck - 05 Dec 2006 07:24 GMT
My sense from reading all of your posts is that it's still way early to
get the idea that you're "stuck with what I have." You're barely past
one month from surgery. Everything that I've read on this and other
forums, as well as in medical literature, suggests that the healing
process to recover erectile function typically takes from six months to
a year depending on your age, health and quality of erections prior to
surgery. For some it can be a two year process. I'm still working on it
after a year and it continues to get better. The purpose of Viagra at
your stage is simply to reestablish blood flow to prevent atrophy. It
is probably not reasonable to expect that it would produce an erection
yet. As for orgasm, it isn't as easy as it was before because of the
absence of semen and the pleasurable contractions that occurred in the
prostate during ejaculation that were part of orgasm. But once the
nerves start to heal, orgasm can be quite intense if you relax and take
your time to get there. Perhaps you recall masturbation as a child
before you could ejaculate. I think the sensations are much the same as
that. It is perhaps more localized than when there was ejaculation, but
in some ways it is more intense. I think some of what you're
experiencing now is the result of being too worried and focused on
making something happen that really just has to happen on its own. Make
it fun, not work. Spend more time stimulating your partner and making
her feel good. Eventually something will happen on its own. You would
be very short-sighted to assume that at this stage so soon after
surgery, it's already as good as it gets. It gets better. I doubt that
it will ever be the same without all the spurting. My wife calls it
"orgasm without the mess" but I always kind of liked the mess. At least
there is still orgasm.
kh - 05 Dec 2006 09:45 GMT
> My sense from reading all of your posts is that it's still way early to
> get the idea that you're "stuck with what I have."

It's much too early.  I don't have direct experience with this because
I had Lupron and radiation.

After I got past the Lupron, orgasms for the first 6 months or so were,
"so what".

When they say, "it's in your brain", they're not facing up to it.

The pleasurable clenching was missing.  I don't know whether it's the
prostate, urethral bulb, missing semen, nerves, or pelvic floor muscles
but something was not working like it used to.

>From what I've read here, it's worse for surgery-grads but radiation is
not a free pass.  The radiation kills nerves, muscles, prostate cells,
valves, something, that is important to a quality orgasm.

In the last 6 months or so, that's months 18-24 after radiation
treatment, my orgasms have improved.  It almost "feels" like before.

I don't have the urgency or libido that I did.  It might be my lower
(300) Testosterone or it might be that I don't produce much semen.
Without a "load" of semen, the signals to take care of this are
missing.

Orgasms lack the "I'm passing my fluid deep into you" quality but
that's getting better too.

"keep pullin'". As you are able, develop and practice your other
techniques, not because that's all you'll ever be capable of but
because you can.   Explore your options.  

-kh
Beverley - 05 Dec 2006 17:39 GMT
When you said "pleasurable clenching" you perfectly described what my
husband says about orgasm now. It's different. That doesn't mean it's bad.
Bev

> > My sense from reading all of your posts is that it's still way early to
> > get the idea that you're "stuck with what I have."
[quoted text clipped - 31 lines]
>
> -kh
Mary Fisher - 05 Dec 2006 12:24 GMT
...

> But once the
> nerves start to heal, orgasm can be quite intense if you relax and take
> your time to get there.

I'll vouch for that.

> ... My wife calls it
> "orgasm without the mess" but I always kind of liked the mess. At least
> there is still orgasm.

I agree with your wife :-)

Mary
Beverley - 05 Dec 2006 17:46 GMT
Yah!!! No more wet spot, no more changing the sheets every time!!!

I often wondered what the heck happened inside - did it hit the top with
such force that it flew right back out again? It never seemed to matter how
hard I held on it still managed to leak all over the place. And never, ever,
pull out without a good supply of tissues.
:-(
(Sorry for being graphic but I'm being honest.)

Got to at least look at the advantages.
Bev

> ...
>
[quoted text clipped - 11 lines]
>
> Mary
Heather - 05 Dec 2006 20:51 GMT
(reaching deep into the memory bag here, grin)........

Good grief, ladies!!  I may be a lot older than you but have you never
heard of using a big old beach towel beneath you?????

Always hated that *wet spot* on MY side of the bed......so the towel
solved the problem.....and took the place of a wad of kleenex.

Maybe it is a Canadian thing.....ROFL!!

Heather

> Yah!!! No more wet spot, no more changing the sheets every time!!!
>
[quoted text clipped - 28 lines]
>>
>> Mary
Mary Fisher - 05 Dec 2006 21:06 GMT
> (reaching deep into the memory bag here, grin)........
>
> Good grief, ladies!!  I may be a lot older than you

I'm 67 :-)

> but have you never
> heard of using a big old beach towel beneath you?????

Yes but it doesn't solve the itchiness.

Mary
Mary Fisher - 05 Dec 2006 21:05 GMT
> Yah!!! No more wet spot, no more changing the sheets every time!!!
>
[quoted text clipped - 6 lines]
> :-(
> (Sorry for being graphic but I'm being honest.)

For me the worst part was that it made me itch. I couldn't sleep without
washing. Tissues weren't enough.

> Got to at least look at the advantages.

Absolutely!

As for being graphic, the men round here don't worry about that!

Mary
kh - 05 Dec 2006 22:57 GMT
> Yah!!! No more wet spot, no more changing the sheets every time!!!
>
> I often wondered what the heck happened inside - did it hit the top with
> such force that it flew right back out again? It never seemed to matter how
> hard I held on it still managed to leak all over the place. And never, ever,
> pull out without a good supply of tissues.

Once I looked to see what was happening, then I researched what I saw
to confirm my observations.

It's not you.

Semen liquifies and dribbles, almost like water.  It changes
consistency and drips out.

The shape of our lit'l head is a small scoop and designed to bring
semen out.  Some scientists theorize that the intent is to remove the
semen of competitors, that a healhy stroking and pumping serves to
remove someone else's semen.

Then when we're satisfied that "the coast is clear", we can "go deep"
and "fill the void".

One woman told me that pulling out a flaccid penis felt like a wet,
slimy snake oozing across her labia.  I think she liked it but she
always made a sound like cold-chills when I pulled out.  Of course I
would pull out extra slow, sometimes take a few more strokes for good
luck.

-kh
gary - 06 Dec 2006 00:39 GMT
one major question i have for everyone is how soon did you start with
the orgasms and what was it like when you started?
is it better now than when you started?
if so, was the improvement gradual or  a sudden improvement?

gary

> > Yah!!! No more wet spot, no more changing the sheets every time!!!
> >
[quoted text clipped - 26 lines]
>
> -kh
Tom - 06 Dec 2006 01:22 GMT
I had NS RRP 14 months ago. My first orgasms were really poor. I
learned that things improved when I slowed way down approaching orgasm.
It's the old roller coaster analogy. The trick for me is to stop just
before the point of no return and go over the apex very slowly. On the
way down I have contractions as before but without the mess. The most
powerful Os are in the shower with soap completely limp. They're better
than before Rp, very intense.For me the lack of ejaculation doesn't
matter. It took awhile so be patient. Emotions play a big role male or
female, pre RP or post RP. Anxiety is an O killer so slow down and have
fun.
I.P. Freely - 06 Dec 2006 01:31 GMT
> one major question i have for everyone is how soon did you start with
> the orgasms and what was it like when you started?
> is it better now than when you started?
> if so, was the improvement gradual or  a sudden improvement?

Took 20-30 minutes at first, but since it was fun, who was counting?
It's been getting better -- greater engorgement, better technique,
better results -- bit by bit over the last two years. But I'll never get
stuffable again, and will probably wear pads to my grave, despite my
surgeon's expectations to the contrary.

OTOH, I may have dodged a FAR worse bullet, and consider some of the SEs
of additional treatment to be worse, so I'll get by.

Gary, you're obsessing prematurely on this stuff. You just ripped your
crotch apart; you can't expect anything resembling your new normalcy for
many months -- maybe a year or two, or even more -- regarding sex,
continence, strength, discomfort, etc. Exercise everything from top to
bottom -- including the middle (Know why sex is so convenient? Because
it's CENTRALLY LOCATED.) -- and after 10-30 months you'll stop seeing
improvements. Odds are you'll be dry and hard by the end of next year.

I.P.
kh - 06 Dec 2006 01:37 GMT
> one major question i have for everyone is how soon did you start with
> the orgasms and what was it like when you started?
> is it better now than when you started?
> if so, was the improvement gradual or  a sudden improvement?

It took me a long time to, er, get back in the saddle, so to speak.

About 3 to 6 months after the Lupron supposedly wore off, I began with
barely stuffable erections and "is that all" orgasms.   I'd think about
my first girlfriend, like the time we visited her friend.  Her parents
were out so we used her friend's bedroom,  dolls on the shelves,
Beatles posters, frilly lampshade, there we were, going at it.  She's
yelling "shoot it in".  I'm terrified of pregnancy so I pull out and
squirt on the bed.

Later, I heard the girls giggling, "Put it in the hamper", "Wait, smell
it",  "I don't want to smell it."

I'd have to think hard about those details to get going and just as
there was a little firmness, there'd be a twitch or two, and, well,
"That's all Folks!"  Beginning to end, 2 minutes. Tops.

For the last year, I'd mull over stuff like that and the divorcee
where I used to live 25 years ago.  She was always going on about
"One-night-stands don't count". how much sex she needed, and how her
out of town, boyfriend wouldn't leave his wife.

Where THAT story comes around is that 20 years ago, she mentioned that
they had broken up, then shortly after that, she heard that he had
prostate cancer.

Then for years, she waited for him to call.  He never did.  She's been
waiting 20 years. She's 64 now, he'd be 78.

My guess is that the treatment 20 years ago left him with ED and maybe
incontinent.  What did they have in 1986?  Late diagnosis by symptoms
or DRE?  The main treatment then was the non-nerve-sparing radical.

She used to tell how big his penis was, how often they had sex on their
monthly trysts, how he gave it to her for hours.  She called him her
sweetie and said that it was true love.

Over the years, her story changed.  She says that sex wasn't important
to her, that he didn't have prostate cancer, and that she never did
half the things she did.

For me, Lupron, radiation, it took two years for erections and orgasms
to return to the 80% point.  I had a 90% normal experience on 8 mg of
Levitra last week.

This week I've had several 80% erections just from rubbing my pants
while writing these stories.  Maybe these will help someone.  I hope
so.

-kh  It's the full moon.  Sex is better during the full moon.
Steve Kramer - 08 Dec 2006 11:41 GMT
> My sense from reading all of your posts is that it's still way early to
> get the idea that you're "stuck with what I have."

As I recall, you're pushing 1¼ years.  My first unassisted usuable erection
was May 2002, 1½ years post op.

Signature

PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA  .1  .1  .1  .27  .37  .75
EBRT 05-07/2002 @ 47
PSA  .34 .22 .15 .21 .32
Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05,
2/06, 6/06
PSA  .07 .05 .06 .09 .08 .132 .145
Casodex added daily 07/06
PSA <0.04
Non Illegitimi Carborundum

c palmer - 05 Dec 2006 09:30 GMT
i sent you an email.....

~ curtis

knowledge is power - growing old is mandatory - growing wise is optional    
"Many more men die with prostate cancer than of it. Growing old is
invariably fatal. Prostate cancer is only sometimes so."
http://community.webtv.net/PALMER_ENT/doc
gary - 06 Dec 2006 00:36 GMT
thank you curtis.
i did receive your email.
one of the posts here did raise an interesting question in relation to
your email about the  feedback of ejaculation as a contributor to
feeling the orgasm.  i was masterbating at a very young age, years
before i could ejaculate.  i remember the feeling being very intense.
so, maybe that feedback is not critical.  i am also wondering about the
dorsal nerves that feedback to the brain and are not affected by the
prostate.  is that now the main feedback source?  Maybe the lack of
erection is a big contributor. before surgery, i used 75mg of viagra
for intercourse.  i didn't need it for masterbation.  i got an erection
without viagra, but not enough for penetration.
gary

> i sent you an email.....
>
[quoted text clipped - 4 lines]
> invariably fatal. Prostate cancer is only sometimes so."
> http://community.webtv.net/PALMER_ENT/doc
Beverley - 05 Dec 2006 18:08 GMT
It's way too early to assume anything.

Nerves heal slowly and it's the nerves that allow you to actually feel
anything.

You might never get back all the feeling again. But you have several factors
working in your favor. First and foremost you are communicating with your
wife over this situation. That is going to really help you with your
recovery. Being able to talk openly with your wife and discussing your
pleasure or lack of it will help her to help you.

Keep working and keep trying. It's as if you have to teach your body what it
is supposed to do. Don't worry because that can create bigger problems. If
you were 5 years out and having problems we'd probably all agree that it was
a good as it would get, but not 5 weeks!

Relax and enjoy what sensations you do feel. Keep working at it and don't
give up. Just don't obsess over what you're not feeling at this time. Sex is
going to be different after PC; there is no doubt about that.
Bev

> this is a 2nd post to solicit more responses to my previous post about
> problems with orgasm after RLRP.  this chat room seems to be the only
[quoted text clipped - 13 lines]
> can know the truth.
> gary
Mary Fisher - 05 Dec 2006 21:08 GMT
> It's way too early to assume anything.
>
[quoted text clipped - 20 lines]
> going to be different after PC; there is no doubt about that.
> Bev

Well said. As well as the 'might'. We don't know, the urologist doesn't
know, there's no standard.

Whatever happens - or doesn't - it's better than the alternative.

Mary

>> this is a 2nd post to solicit more responses to my previous post about
>> problems with orgasm after RLRP.  this chat room seems to be the only
[quoted text clipped - 13 lines]
>> can know the truth.
>> gary
I.P. Freely - 05 Dec 2006 18:33 GMT
> please share your experience and opinions so i
> can know the truth.

The only "truth" in PC treatment I can think of is that it will never
improve erections (and VERY seldom improve one's sexual performance).

I.P.
John Loomis - 06 Dec 2006 01:35 GMT
Hello Gary......It takes time............
Really.
I understand the want, and such, but in time, if you work hard, you will
achieve a satisfactory compensation for missing a prostate, and nerve
damage....
It is like a running injury.....You need to take care of yourself, don't
push the pedal to the metal....
You are going to miss ejaculate, and to this day I do!  That is what a man
does.....He likes the feeling of ejaculating.....Regardless of what the
women say and the wet spot, they do not have a clue as to what was lost.
So anyway,
I tried viagra, and pump, and also injections....
Funny, Viagra failed, the first 2 years......The pump was fun.....but
...but....
Injections were great, but hurt sometimes......
Notice, I tried all avenues.....
After 2 years.....I tried a small piece of viagra.....WOW#!
I had an erection.....that was regular...
Again I have to say, orgasm come from your Brain, and not Prostate...
So, take some time, do not get frustrated, yes I miss ejaculation....That
feels so good!
Anyway, we now have a "dry orgasm"  It feels so good.
Take time, relax, walk, eat fruits and vegies....
Do not try to "make it right" right away.....
It does take time.
Realize you are going to miss ejaculation...Ladies do not mind...
Anyway, keep trying...I was 2 years post surgery....Tried it all. I was 49.
I used injections, pump, bought my wife a vibrator.....to try to please her.
With all the work, and after 2 years, I regained a significant Boner....and
with the use of Viagra...
Quite hard....
Keep trying, it does take time......
You are missing some aspects of sex, but have a few more pennies in your
pocket to "re live" the sex that was lost.
Your Friend.....John.
I have been there, and share your humility..
> this is a 2nd post to solicit more responses to my previous post about
> problems with orgasm after RLRP.  this chat room seems to be the only
[quoted text clipped - 13 lines]
> can know the truth.
> gary
 
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