One minute its UP and the next its DOWN?

[PSA3DOT7]

Week 6 after RP:

I was very positive last week; perhaps a bit too upbeat. I had a reasonable erection last week ( one out of three tries) that lasted a while. Well, today was an absolute disaster. Took a Viagra waited about 1h20 and started the routine, pumps and ring and massage oil and some "helping hands". Perhaps I waited too long for the Viagra to kick in, but today was just different! The week was also different: had cold and flu for the best part of the week and my incontinence was at its worst. Every sneeze and cough caused a leakage of some measure.

I guess the success of last week created an expectation that this week would be more of the same; but not to be. I should be happy with 1 of 4 this early in the rehab game! At least the nerve sparing RP I had was successful to some degree!

Have any of you had this intermittent "success": one minute its UP and the next its DOWN?

[Andy425]

You should be very optimistic. I'm 18 months out from a RP. I can get a semi by myself, not really sure if I could penetrate anything or not, maybe. To whatever extent the damaged nerves heal (I had one bundle removed), it may take a couple of years or more.

I still have leakage problems now and then (mostly at home when I'm not paying attention) but nothing bad like the 3 months post-op when wearing a pad. I was using 5 pads a day the first month or so.

It seems to me that when we are seriously ill -- either from major surgery or otherwise -- there are good and bad days. You may improve noticeably for a while, then slip back for a couple of days. IMO this is a normal part of healing.

[PSA3DOT7]

Thanks Andy for the encouraging words.

You know this whole thing feels weird discussing hardons and having (or planning to have) sex with my wife, which I always considered to be an extremely private and personal matter. Just thought I'd share that!

For penis rehab the Urologist recommended I take 25mg of Viagra four nights a week to encourage natural nocturnal erections which preserves muscle. Apparently its this lack of muscle preservation (atrophy) that may result in irreversible ED. I'm all for preservation and I've been encouraged to pump everyday - the shower has been suggested by the ED nurse. Saturday morning has been set aside for a right royal wank! (I trust none of you will send me messages then cause I'll be busy). At this stage I dont pump everyday, I'm still a bit tender - but I'll start the regime soon.

I know that we are all different and we also had very different erections prior to RP but was this "nerve sparing caper" really worth the trouble! I'd like to hear from people who have had an RP and who have reasonable (assisted or unassisted) erections for coitus!

I reckon it will take me awhile to process my loss, but I can you I really miss my prostate!

[Andy425]

Thanks Andy for the encouraging words.

You know this whole thing feels weird discussing hardons and having (or planning to have) sex with my wife, which I always considered to be an extremely private and personal matter. Just thought I'd share that!

Yup, it's all pretty dumb at this age, but we have to deal with what is. Dying of prostate cancer would not be fun either.

For penis rehab the Urologist recommended I take 25mg of Viagra four nights a week to encourage natural nocturnal erections which preserves muscle. Apparently its this lack of muscle preservation (atrophy) that may result in irreversible ED. I'm all for preservation and I've been encouraged to pump everyday - the shower has been suggested by the ED nurse. Saturday morning has been set aside for a right royal wank! (I trust none of you will send me messages then cause I'll be busy). At this stage I dont pump everyday, I'm still a bit tender - but I'll start the regime soon.

I took daily Cialis for 6-8 months until I found out that it was causing my severe acid reflux. I don't know what good it ever did. I pump every day for 20 minutes, and inject once or twice a week -- all for therapy, as I have no woman around.

I know that we are all different and we also had very different erections prior to RP but was this "nerve sparing caper" really worth the trouble! I'd like to hear from people who have had an RP and who have reasonable (assisted or unassisted) erections for coitus!

As I said above, this is probably better than dying of prostate cancer (like my neighbor who is on hormone therapy, which generally keeps things under control only for a few years.)

I reckon it will take me awhile to process my loss, but I can you I really miss my prostate!

Yeah, I miss my gland too but there isn't much we can do about that.

[billylee]

Other than having to have removal of prostrate which is to avoid death of prostrate cancer, why do you guys miss the prostrate? Really, I am curious.

I still have mine but after TURP ejactulation is retrograde so I rarely even know when I do. Couple that with somePE then sex can be short and not near the feel as it was when I knew I ejaculated. Got to admit not near as messy though.

I want the IPP to rid myself of PE and to COMPLETELY satisfy my wife....although she would say she is satisfied. I think I know better.

bill

[JimStars]

billy,

Yes good question about why any guy (old guys at least) would really want to keep a prostate around.

For me I had pretty severe BPH (and had not gotten a TURP or anything yet). Then came prostate cancer so that was that for the enlarged prostate -- out with it.

Makes it sooooo nice to be able to pee on command and completely -- not waiting for the prostate to say its now OK now its not . now its OK .. now its not .. and of course no more going and going and going.

My Uro had even said he could have renoved my prostate just to cure my BPH -- not sure if insurance would allow sucha thing or not -- but I did not have to find out.

And of course with PGE-1 shots I can keep up with my side o the keepin it up bargain ... no problems there ...

J

[Andy425]

My prostate was NOT enlarged so I had no urinary problems. I had no symptoms of anything, PSA was normal. But my doc felt a bump on the gland and that started the whole ball rolling.

I would love to have the gland back because:

-- Continence is a daily struggle, and will be for life. We have to consciously "hold" it most of the time, although by now (+ 1.5 years) it is mostly subconscious as our bodies adjust -- but that one specific sphincter muscle and its absolute, involuntary bladder control is gone forever. I am still aware of all this every time I stand up and/or walk. It's like carrying one of those thin plastic party cups around all day long, filled to the brim with urine, and trying not to spill any. There is nothing fun about it, including doing Kegel exercises, three times a day, for life.

-- Sexual function is, apparently for most men, a much bigger and longer-lasting problem than continence.

-- It would be MUCH easier to start a relationship with a woman while one still has the gland. I have no idea of how to even approach it now, so I don't bother. Removal of my gland has, to date anyway, destroyed my love and/or sex life.

[PSA3DOT7]

Week 7 after RRP.

Just got my latest PSA results < .01 ug/L I reckon thats good. The urologist wants another test done, in January!

Incontinence is getting better. I don't exercise 3 times every day.Why? In weight training I was told (an practiced) if you want to strengthen a muscle, you have to fatigue the muscle (say three exercises a day) and then rest (zero exercises) the next. Its during this "rest" period that the muscle strengthens. I raised this issue with the Physio who advises on Pelvic Floor exercises, and she was adamant that repeated daily exercises should be maintained as the pelvic floor muscle has different twitching fibers to (say) your biceps. I'm not all convinced as the days of my repeated exercises are more WET than dry; my resting days are more DRY than wet! I'm learning - this is not to say the same regime would work for others.

ED -- We'll as per my introduction (see viewtopic.php?f=14&t=3361), I have had a reasonable erection: one erection out of 5 attempts. The Urologist and ED Nurse were a bit surprised. The ED Nurse in particular said that some RP patients would get an "early" erection only to loose it completely in subsequent months -- that was depressing. However, I'm not deterred and will now persist with Cialis instead of Viagra. (Ive got an un-opened box of Cialis and will attempt again in the next few days.). Like with the incontinence, I have scheduled rest days. Why? I perceive the body as a closed system that will automatically correct any imbalances, thus taking Viagra and/or Cialis regularly does not allow the body to do things naturally!

I was given an excerpt to "Saving your sex life: A Guide for men with prostate Cancer" by Mullhall (2009). In this book he suggests that nocturnal erections are beneficial; but what he is not sure of -- and I quote " ... However, it is unknown to us whether one erection every two weeks or five erections every week is better for erectile health ..." p(99)

On a happier note, the Urologist did advise that I should go back on Testosterone immediately (T and free T are way below the norm). I'll post progress once Ive started!

[PSA3DOT7]

Greetings Andy425,

Just reading your post again. Are you saying that you
1) are still incontinent after 18 months
2) have used Cialis DAILY for a long period
3) still doing Kegels a few times a day
4) have erections when you use injections

Man thats good for the erections with injections, the rest sounds like you've plateaued and your body has adjusted to the routine.

This has been my experience thus far (Not that any reader need to following it, I'm just sharing):

1) I did not have incontinence for 3-4 days after the catheter came out; my incontinence started the day of my first Kegel/Pelvic Floor exercises.

2) I'm trialling Cialis but if it does not work well I'm switching to injections -- the earlier the better to preserve muscle and prevent atrophy. Dr Mullhall's book suggests not to use Cialis daily or use it with injections as the interaction effect may cause injury assuming that you have a mega hardon!.

3) I also have my bad p*ssing days on the days I do pelvic floor exercise days. For my routine I use a High intensity interval training (HIIT) calculator on my iPhone! Its ideal for setting "squeeze", "relax", repetition and set times. After 7 weeks I'm on one sometimes two pads a day!

4) If I have no success with the PDE5s I'll switch to injections, early January!

Think all our bodies react differently to these drug and exercises. But, I'm going to listen to my body and NOT follow the script of daily Kegels and PDE5s. I'm going to take these drugs intermittently and not for long periods at a time, giving my body time to get its "Mojo" back!

Ever so often we need to take a break from it all and give our bodies a rest. The Internet is full of advice on Weight gain/loss plateau and what to do about them. One of them is to take a break!

Next week (week 8) will be my break -- I'll detox, no kegels and no PDEs

I'll keep you posted.

Regards,
DoT

[Andy425]

Greetings Andy425,

Just reading your post again. Are you saying that you
1) are still incontinent after 18 months It depends on your definition of incontinence. It isn't like a light switch -- either on or off. Generally speaking, I am continent.
2) have used Cialis DAILY for a long period. I used it for about 8 months, quit in September due to it causing severe acid reflux.
3) still doing Kegels a few times a day. I do ten seconds on, ten seconds off, ten times, three times a day. This is what my uro said, as of one year ago, would be my maintenance cycle. Before that I was doing a lot more.
4) have erections when you use injections. Yes (but they're not like a natural erection) and get semis unaided.

Man thats good for the erections with injections, the rest sounds like you've plateaued and your body has adjusted to the routine.

This has been my experience thus far (Not that any reader need to following it, I'm just sharing):

1) I did not have incontinence for 3-4 days after the catheter came out; my incontinence started the day of my first Kegel/Pelvic Floor exercises.

2) I'm trialling Cialis but if it does not work well I'm switching to injections -- the earlier the better to preserve muscle and prevent atrophy. Dr Mullhall's book suggests not to use Cialis daily or use it with injections as the interaction effect may cause injury assuming that you have a mega hardon!.

3) I also have my bad p*ssing days on the days I do pelvic floor exercise days. For my routine I use a High intensity interval training (HIIT) calculator on my iPhone! Its ideal for setting "squeeze", "relax", repetition and set times. After 7 weeks I'm on one sometimes two pads a day!

4) If I have no success with the PDE5s I'll switch to injections, early January!

Think all our bodies react differently to these drug and exercises. But, I'm going to listen to my body and NOT follow the script of daily Kegels and PDE5s. I'm going to take these drugs intermittently and not for long periods at a time, giving my body time to get its "Mojo" back!

Ever so often we need to take a break from it all and give our bodies a rest. The Internet is full of advice on Weight gain/loss plateau and what to do about them. One of them is to take a break!

Next week (week 8) will be my break -- I'll detox, no kegels and no PDEs

I'll keep you posted.

Regards,
DoT

I think doing Kegels is important, but some therapists go way overboard because most patients think that health care is "free," so there is no downward pressure on prices. Thus, a PT (or any health care provider, for that matter) has the financial incentive to have you keep coming to them, probably forever, or until your "insurance" no longer pays for it.

A friend of mine was doing all kinds of bizarre exercises after his RP, recommended by a PT. He quit going because it was no longer helping.