Re: Thinking of changing my urologist...

[Guest guest]

Dave --

1. Your reaction to MUSE is (unfortunately) common. Injectable Caverject

causes some pain in a substantial number of men who try it. " Bi-mix " (no

Caverject) and 'tri-mix' (a little Caverject) are tolerated better.

2. Don't ignore the " interpersonal aspects " of what you're going through!

.. . . " Prostate cancer is a couples' disease. "

Most doctors ignore such considerations -- no training, no expertise, and lots

of embarassment around emotional problems. My wife and I were very happy with a

sexual-function specialist we saw. She was concerned with _both of us_

individually, and how we related to each other. [We were also having a good sex

life before surgery, which helped a lot.]

Unlike a surgeon, she had no ego invested in the quality of my surgery. The

motto of some urologists should be:

.. . . " I've done a good job -- what's wrong with _you_ ? "

So she was willing to try stuff until we found something that worked.

>

.. . .

> The Muse doesn't fail me completely. I get a sort of an erection, not very

hard, not very big and it burns and I get strange pains in the pelvic area. The

erection doesn't last long and doesn't feel like arousal, just like a response

to irritation (like when I got a painful erection a week after the biopsy due to

passing clots). Then for a few hours afterward I get a little bit of stirring

which reminds me of what it felt like to be intact. It's not a sexual feeling at

all, and it's no good to me or my partner for anything but making me feel

depressed all over again.

> I'm not going to even start on my partner's intact capability and total lack

of interest coming up against my intact desire and total lack of capability. I

get sick thinking about spending the next 30 years this way.

> - Dave.

>

[Guest guest]

Dave --

With my open surgery, orgasms were painful for a while (weeks? months?) after

surgery. One of the physical things that happens during orgasm is that the

pelvic-floor muscles contract. After they've been damaged by surgery, they

_hurt_ when they contract. After a while, the pain disappears, and much of the

pleasure returns. Maybe that's different for robotic surgery, maybe not.

You'll always be missing the feeling of ejecting semen. But a lot of the " brain

event " of orgasm comes back. [i found that an anti-depressant I was taking had

" anorgasmia " as a side-effect, for me. I decided it was better to be depressed,

than to be unable to have an orgasm, and quit taking it.]

As I said, prostate cancer is a couple's disease. Talking with your wife, with

or without professional help, is a very good idea. It may be difficult to keep

your feelings about her separate from those about your urologist, and vice

versa. It's a lot easier to switch urologists, than to switch wives.<g>

It's possible to maintain a decent sex life with no erectile function (we did

that for a year), but both of you have to be committed to it, and enjoy it

enough to keep on chuggin'.

I suspect that " divorce " should be listed as one of the possible side-effects of

treatment for prostate cancer. I don't know if anyone has statistics to back

that up, but the anecdotal evidence is strong. The combination of " no

intercourse " and " post-surgical depression " will put strains on the strongest

relationship.

There are two online groups I know that specialize in the " couple problems " of

prostate cancer:

.. . The Yahoo " Intimacy_after_PC " group:

.. . . http://health.groups.yahoo.com/group/Intimacy_after_PC/

And the " Prostate Cancer and Intimacy " group at:

.. . . www.prostatepointers.org

And one book about it (I think there are more):

.. . . Intimacy With Impotence: The Couple's Guide To Better Sex

.. . . After Prostate Disease

.. . . by Ralph Alterowitz and Barbara Alterowitz

.. . . (Paperback - May 27, 2004)

I wish I could tell you that recovery from treatment is easy, or that good

results are guaranteed. Unfortunately, the best I can say, is that other people

have travelled the road before you. It's gotten easier, for many of us, than it

was in the beginning.

I'm all out of platitudes for the night --

.. .

.. .

.. .

> It would be easier to put up with all this stuff if a) the GU gave me a

clearer idea of what to expect and my wife showed some interest so I would

feel there was a point to going through all this. I will confront him about a.

and I had a long discussion with my wife about b., so if we both budge a little,

maybe something good will happen. It's all so much harder to put up with if you

don't know that there's a reason anymore.

>

[Guest guest]

As another option, to corrupt the old saying, abstinence makes the heart grow fonder. Not to be sniffed at when you're in your dotage and really don't have another choice!

To: ProstateCancerSupport Sent: Wednesday, 30 December, 2009 7:17:06Subject: Re: Thinking of changing my urologist...

Dave --With my open surgery, orgasms were painful for a while (weeks? months?) after surgery. One of the physical things that happens during orgasm is that the pelvic-floor muscles contract. After they've been damaged by surgery, they _hurt_ when they contract. After a while, the pain disappears, and much of the pleasure returns. Maybe that's different for robotic surgery, maybe not.You'll always be missing the feeling of ejecting semen. But a lot of the "brain event" of orgasm comes back. [i found that an anti-depressant I was taking had "anorgasmia" as a side-effect, for me. I decided it was better to be depressed, than to be unable to have an orgasm, and quit taking it.]As I said, prostate cancer is a couple's disease. Talking with your wife, with or without professional help, is a very good idea. It may be difficult to keep your feelings about her separate from those about your urologist, and vice versa. It's a lot easier

to switch urologists, than to switch wives.<g> It's possible to maintain a decent sex life with no erectile function (we did that for a year), but both of you have to be committed to it, and enjoy it enough to keep on chuggin'. I suspect that "divorce" should be listed as one of the possible side-effects of treatment for prostate cancer. I don't know if anyone has statistics to back that up, but the anecdotal evidence is strong. The combination of "no intercourse" and "post-surgical depression" will put strains on the strongest relationship.There are two online groups I know that specialize in the "couple problems" of prostate cancer:. . The Yahoo "Intimacy_after_ PC" group:. . . http://health. groups.yahoo. com/group/ Intimacy_ after_PC/ And the "Prostate Cancer and Intimacy" group at:. . .

www.prostatepointer s.orgAnd one book about it (I think there are more):. . . Intimacy With Impotence: The Couple's Guide To Better Sex . . . After Prostate Disease . . . by Ralph Alterowitz and Barbara Alterowitz . . . (Paperback - May 27, 2004)I wish I could tell you that recovery from treatment is easy, or that good results are guaranteed. Unfortunately, the best I can say, is that other people have travelled the road before you. It's gotten easier, for many of us, than it was in the beginning. I'm all out of platitudes for the night -- . . . . . . > It would be easier to put up with all this stuff if a) the GU gave me a

clearer idea of what to expect and my wife showed some interest so I would feel there was a point to going through all this. I will confront him about a. and I had a long discussion with my wife about b., so if we both budge a little, maybe something good will happen. It's all so much harder to put up with if you don't know that there's a reason anymore.>

[Guest guest]

Hello Mr. Thank you so much for sharing your experience with me and for the information provided. Your email is by far the best feedback I received so far.Would you share with me your treatment option (radiation or total rival of prostate? Do you have any feedback from Brachytherapy patients? Thank you very much.DaveSent from my iPhone

As another option, to corrupt the old saying, abstinence makes the heart grow fonder. Not to be sniffed at when you're in your dotage and really don't have another choice!

From: C <cpcohen1945>To: ProstateCancerSupport Sent: Wednesday, 30 December, 2009 7:17:06Subject: Re: Thinking of changing my urologist...

Dave --With my open surgery, orgasms were painful for a while (weeks? months?) after surgery. One of the physical things that happens during orgasm is that the pelvic-floor muscles contract. After they've been damaged by surgery, they _hurt_ when they contract. After a while, the pain disappears, and much of the pleasure returns. Maybe that's different for robotic surgery, maybe not.You'll always be missing the feeling of ejecting semen. But a lot of the "brain event" of orgasm comes back. [i found that an anti-depressant I was taking had "anorgasmia" as a side-effect, for me. I decided it was better to be depressed, than to be unable to have an orgasm, and quit taking it.]As I said, prostate cancer is a couple's disease. Talking with your wife, with or without professional help, is a very good idea. It may be difficult to keep your feelings about her separate from those about your urologist, and vice versa. It's a lot easier

to switch urologists, than to switch wives.<g> It's possible to maintain a decent sex life with no erectile function (we did that for a year), but both of you have to be committed to it, and enjoy it enough to keep on chuggin'. I suspect that "divorce" should be listed as one of the possible side-effects of treatment for prostate cancer. I don't know if anyone has statistics to back that up, but the anecdotal evidence is strong. The combination of "no intercourse" and "post-surgical depression" will put strains on the strongest relationship.There are two online groups I know that specialize in the "couple problems" of prostate cancer:. . The Yahoo "Intimacy_after_ PC" group:. . . http://health. groups.yahoo. com/group/ Intimacy_ after_PC/ And the "Prostate Cancer and

Intimacy" group at:. . .

www.prostatepointer s.orgAnd one book about it (I think there are more):. . . Intimacy With Impotence: The Couple's Guide To Better Sex . . . After Prostate Disease . . . by Ralph Alterowitz and Barbara Alterowitz . . . (Paperback - May 27, 2004)I wish I could tell you that recovery from treatment is easy, or that good results are guaranteed. Unfortunately, the best I can say, is that other people have travelled the road before you. It's gotten easier, for many of us, than it was in the beginning. I'm all out of platitudes for the night -- . . . . . . > It would be

easier to put up with all this stuff if a) the GU gave me a

clearer idea of what to expect and my wife showed some interest so I would feel there was a point to going through all this. I will confront him about a. and I had a long discussion with my wife about b., so if we both budge a little, maybe something good will happen. It's all so much harder to put up with if you don't know that there's a reason anymore.>

[Guest guest]

Folks,

I feel quite strongly about this subject. My surgeon said in 1996 I would

never have normal erections again after removing both nerve bundles. This

turned out to be patently untrue. As he is one of the formost urological

surgeons in the west, there has to be a problem here with understanding the

biology of long term surgical recovery rather than the surgery itself. If he

said he removed both nerve bundles, that is exactly what he did. I survived

a lot longer than he thought I would, so had plenty of time to regrow the

plumbing and electrics.

> You'll always be missing the feeling of ejecting semen.

Strange to say after having both nerve bundles removed, but this too is

unture in my case. Perhaps it is because I have always exercised and

maintained muscle integrity in the pelvic floor. My orgasms are accompanied

by all the usual sensations plus the measured ejaculation of liquid. In the

absence of a prostate and seminal vesicles, the liquid has to be urine.

However, this is not simply the muscles letting go and allowing a moment of

urinary incontinence. It is all the pelvic muscles acting in concert and as

good an orgasm as I have ever had (albeit the rounds are now dud ;-). That

at least I have to be thankful for .. and a surgeon who no doubt knew what

muscles and blood vessels to reconnect even in his sleep.

For anyone who has had robotic surgery with all the promise of sparing nerve

bundles and so on .. if you are still having ED problems then maybe check

your testosterone level, SHBG and estradiol. If these are out of kilter it

could lead to ED. Good luck.

Sammy.

Re: Thinking of changing my urologist...

Dave --

With my open surgery, orgasms were painful for a while (weeks? months?)

after surgery. One of the physical things that happens during orgasm is that

the pelvic-floor muscles contract. After they've been damaged by surgery,

they _hurt_ when they contract. After a while, the pain disappears, and much

of the pleasure returns. Maybe that's different for robotic surgery, maybe

not.

You'll always be missing the feeling of ejecting semen. But a lot of the

" brain event " of orgasm comes back. [i found that an anti-depressant I was

taking had " anorgasmia " as a side-effect, for me. I decided it was better to

be depressed, than to be unable to have an orgasm, and quit taking it.]

As I said, prostate cancer is a couple's disease. Talking with your wife,

with or without professional help, is a very good idea. It may be difficult

to keep your feelings about her separate from those about your urologist,

and vice versa. It's a lot easier to switch urologists, than to switch

wives.<g>

It's possible to maintain a decent sex life with no erectile function (we

did that for a year), but both of you have to be committed to it, and enjoy

it enough to keep on chuggin'.

I suspect that " divorce " should be listed as one of the possible

side-effects of treatment for prostate cancer. I don't know if anyone has

statistics to back that up, but the anecdotal evidence is strong. The

combination of " no intercourse " and " post-surgical depression " will put

strains on the strongest relationship.

There are two online groups I know that specialize in the " couple problems "

of prostate cancer:

.. . The Yahoo " Intimacy_after_PC " group:

.. . . http://health.groups.yahoo.com/group/Intimacy_after_PC/

And the " Prostate Cancer and Intimacy " group at:

.. . . www.prostatepointers.org

And one book about it (I think there are more):

.. . . Intimacy With Impotence: The Couple's Guide To Better Sex

.. . . After Prostate Disease

.. . . by Ralph Alterowitz and Barbara Alterowitz

.. . . (Paperback - May 27, 2004)

I wish I could tell you that recovery from treatment is easy, or that good

results are guaranteed. Unfortunately, the best I can say, is that other

people have travelled the road before you. It's gotten easier, for many of

us, than it was in the beginning.

I'm all out of platitudes for the night --

.. .

.. .

.. .

> It would be easier to put up with all this stuff if a) the GU gave me a

clearer idea of what to expect and my wife showed some interest so I

would feel there was a point to going through all this. I will confront him

about a. and I had a long discussion with my wife about b., so if we both

budge a little, maybe something good will happen. It's all so much harder to

put up with if you don't know that there's a reason anymore.

>

[Guest guest]

-

I have no pain, but my orgasms are variable, ranging from " that's nearly okay "

to " now that that's over with, what's on ESPN? " They have all been solo

performances. I read an article in which one guy described his orgasms as not

having the whole orchestra but at least having the trumpet section. I have a

solo piccolo, which, considering what surgery has left me size-wise, is a

fitting metaphor. I don't have any pain from them. I don't have much of anything

from them. I don't know whether that has anything to do with a lack of

excitement, since I am masturbating just to keep the machinery from rusting. As

I said before, it would be better if my wife had any kind of sexual interest,

but she is not interested in anything more than having a warm body next to her

on a cold night, and while that is nice, it certainly isn't the kind of fun we

could be having. I know it is a significant part of my anger and depression over

my lack so far of options. As I have said before, if she showed the slightest

interest, I would probably grab at any bone® thrown my way and want to follow

the regimen diligently instead of cursing the medication when my rationed

erection comes due every five days.

In any case, I will try to get the urologist off the dime, and if he is

unwilling to do any more than he has done, which is to basically throw the MUSE

at me, he will be archived.

.. . . . . . It would be easier to put up with all this stuff if a) the GU gave

me a clearer idea of what to expect and my wife showed some interest so I

would feel there was a point to going through all this. I will confront him

about a. and I had a long discussion with my wife about b., so if we both budge

a little, maybe something good will happen. It's all so much harder to put up

with if you don't know that there's a reason anymore.

[Guest guest]

.... I take diltiazem, a calcium-channel blocker because my cardiologist thinks I am still susceptible to atrial fibrillation 18 months after the last time I showed any signs of it, which was just about a week postop. I think I could do without it, but am not a cardiologist. ....

Just a thought about the atrial fibrillation. A-fib can sometimes be caused by a pulmonary embolism (a "P.E."). And, PE's sometimes occur after surgery. So, if you only had the one episode of A-fib, and if it occurred after surgery (possibly due to a PE), I guess it is possible that what caused the A-fib was the one-time event of a PE. In other words, maybe you do not have an underlying susceptibility to A-fib -- maybe it was just a one-time event. If so, maybe there is no need for the diltiazem.

I am not a doctor, but maybe you could ask your cardiologist about that possibility.

[Guest guest]

It's a good thought but my A-fib developed in the context of having two

bacterially-infected heart valves replaced, which is enough of a reason to have

it. I was carefully followed and prophylaxed against any risk of a PE, making it

fairly unlikely.

But I will see the cardiologist soon and will ask him.

" .... I take diltiazem, a calcium-channel blocker because my cardiologist thinks

I am still susceptible to atrial fibrillation 18 months after the last time I

showed any signs of it, which was just about a week postop. I think I could do

without it, but am not a cardiologist. .... " Just a thought about the atrial

fibrillation. A-fib can sometimes be caused by a pulmonary embolism (a " P. E. " ).

And, PE's sometimes occur after surgery. So, if you only had the one episode of

A-fib, and if it occurred after surgery (possibly due to a PE), I guess it is

possible that what caused the A-fib was the one-time event of a PE. In other

words, maybe you do not have an underlying susceptibility to A-fib -- maybe it

was just a one

-time event. If so, maybe there is no need for the diltiazem.

I am not a doctor, but maybe you could ask your cardiologist about that

possibility.