So here's how the games have been going...

A quick update on my progress and...ok guys, and gals in touch with their husband's issues, I've got questions...

I got my cath out on 9/27 10 days post op, and I'm 4 weeks post op.  I have had some leaking, but not too bad relative to some here, but clearly not as lucky as those who say they have no incontinence issues.

I get some annoying dripping that seems spontaneous and gets worse in the evening.  When I'm up and about, it's like a very slow leaking faucet.  Sometimes a bit more leaking depending upon my activities.  OK, so I tried doing jumping jacks and that was a big NO NO! :)  I tried a bit of quick runs between walking and that wasn't so bad. Walking is ok.  Lifting and moving some boxes in the basement was tolerable.  Sitting or lying is perfect.  I'm only using one small pad a day, but wouldn't feel comfortable at all without it, but it's not saturated either.

Immediately after the cath came out, I felt like I was holding it so tight I could make a diamond in my d*&^.  I wondered the first night how I could go to sleep figuring as soon as I did the flood gates would open.  But my continence at night was perfect.  Completely dry.  And getting up and going to the bathroom was fine too.  Fortunately, that feeling of holding it constantly has mostly gone away, but I do consciously tighten up before a sneeze or a cough or standing up, etc.

Actually, my continence is best in the morning and I feel rested because I'm not waking up to go to the bathroom in the middle of the night, except for maybe once.

But the issues I have are as follows... 

I feel a lot of discomfort in my penis at times.  I can't figure out if it's still from the surgery, the catheter or from the drips, but it's irritating.  I think it's the latter.  By the end of the day, I feel soreness I can only describe as in my urethra.  Has anyone else experienced such discomfort?  It is definitely mild or non-existent in the morning, but builds during they day.  I'm not taking any ibuprofen or tylenol at all.

This morning I did try to stop my stream when I went to the bathroom.  I was able to do so several times, but then it was somewhat painful followed by a bit of pinkish urine which I really hadn't seen for awhile...bad memories of the bag!  Anyone ever have this? I'll try again in the morning.

On the ED side, I only wish I was having the short term success that some here have had.  I have had none yet. I took some Levitra a few times, but no help from that either.  Actually, I feel as though I've less blood flow down there in a non-stimulated state than before surgery.  Again, has anyone experienced this?  It seems less firm than before in general, though I don't notice any difference in size like some have said (and even better, nor does my wife! ).  But since I'm not getting any notable excitement, size really doesn't matter! 

On a positive note, I had to see if the engine turned over at all.  And I didn't wait 6 weeks like the doctor said.  I only waited 2.  And it turned over alright.  I was surprised with no erection and no ejactulation that I actually felt an orgasm, contractions and even had to catch my breath.  Weird but satisfying none-the-less.  And then it was a bit painful for a bit, so I wondered what was contracting?    And if I can get this level of sensation, is it a good sign or is it typical?  I rather think it is probably typical, but I'm being hopeful.  And the pain wasn't bad enough to keep me from doing it again, and...ok, well not that much!

Anyway, I can't believe I'm typing this but what the heck.  It's what everyone is worried about and what everyone wants to know the reality about.

I read some posts and I feel like I'm really lucky.  I read others and I'm jealous as heck. But overall I'm feeling good and getting back to normal routines as much as possible.

I'm lucky I work from home when I'm not traveling, and I have been working since the week post surgery.  I had moved my office to our guest bedroom and was working on the bed for the first 2 1/2 weeks.  Then I forced myself back to my desk when I spilled a cup of coffee on the bed and had to strip the sheets and comforter.  My son was so happy to see me back at my desk and beamed that I looked like I was doing really well.  That made my day!  Of course it was followed by his asking me if it meant that I was ready to do everything I was doing before surgery.  I said I didn't think I was ready to ride a bike yet.

I'm going on my first business trip Nov. 1 to Baltimore and then to San Jose the following week.  I figure a plane ride should be fine except getting that bag into the overhead bin.  Haven't lifted anything up over my head since surgery yet.

Well, that's it on my progress.  I keep reading everyone's posts and am so impressed by the dedicated responders on this site.  I can't keep up like some of you, but try to make up for it by typing essays when I do get going

Good night everyone.

BTW, for those that are new here...be good to yourselves, as it's a long road to treatment and recovery. At first I was totally depressed and sad over my diagnosis and fearful of choosing the wrong treatment for me and scared to death of the side effects of treatment.  Though I have my moments when I wish I had no side effects like the Proton patients, I reread my own post on the decision I made and remind myself why I chose surgery.  I am doing so much better emotionally now that I'm on the road to recovery than I was doing when I was trying to make a decision and flipping like a fish from one to another.   Be strong and pace yourself.  The good days will eventually out-number the bad ones!

Chas, I'm sorry but I was cracking up when you were talking about urinating during an orgasm. After I got my first Trimix injection I did the same thing and couldn't get it to stop. I was running for towels.

41, I had blood in my urine as well but it usually followed a BM that I had to push or strain on. As for the kegals I always did them while urinating and would do them here and there in the car when I remembered. I too feel I was very lucky since I am fully continent at 2 1/2 months post surgery.

Just keep positive and enjoy yourself and your family!

Hey James,

My doc starts the injections at 6 weeks. Sort of scared about it, but can't stand the lack of response from stimulation. It seems each doc has their own protocol for ED rehab. I'll let you know when I know more. My appt is scheduled in a month which is actually 8 weeks, but couldn't get in earlier.

Doug

hey guys,

if you are up for some real time chat at times, feel free to add me to your IM list. sometimes it's hard for me to find time to read all the posts and reply...work is very busy for me.

my yahoo email is also my yahoo mssgr name. if you use something else like MSN or AIM, i am on those too. it's how i communicate with most of my co-workers so i'm on most of the time. i just added kdnole to my IM list, since he has his email here too.

if you've never heard of it, i use trillian for IM which allows you to combine AIM, MSN and Yahoo Messengers into one, so you can chat with folks on any of these networks. you can also set up group chats.

41diagnosed said:

(if you are up for some real time chat at times, feel free to add me to your IM list. sometimes it's hard for me to find time to read all the posts and reply...work is very busy for me. )

I don't have a chat engine on my system.  A suggestion and alternative that might keep things a little more private would be to use the HealingWell Chat function.  I checked it out and it works well, it seems.  Click the Chat button on the Blue line to the right just above the Forum Quick Jump funtion above. 
I don't know if it has a notification function when someone logs in, like some of the others do, but it might be useful.  

because it's there..well, more correctly, because it isn't there.  It has been there at need or sometime even with no need from 13 years old or so, is wrapped up tightly into our ego and psyche, and it the main thing we worry about regaining, even if we lie and say being dry is first.   lol.......  well, maybe just saying 'it's a man thing' will excuse us from our seeming obsession with regaining function, even if we didn't use it much before, it is really important to regain it afterward, as a token of 'cure' and healing.  Geez, it does seem complicated, doesn't it?   lol

just a quick update before I get back on a plane to head back home to chicago. i've been traveling for work for the last two weeks... sunday-wed Napa Valley; thurs-fri Baltimore; sun-thurs San Jose. airport concourses, delays, bags in overhead bins, sitting on 4.5 hour flights with no more than one trip to the bathroom, late evenings with co-workers. i'm in my 8th week post surgery. so overall, feeling pretty good about getting back into a more normal rhythm of life.

i have a pad in my underwear, but it's a very thin one. i pretty much go all day with the one pad for protection. i still get more drips in the evening, but still nothing that significant. i also find i can't keep going in the evening like i used to. i'm going to bed around 11p rather than 1a.

i do seem to drip more after going to the bathroom, either way, than i did before. just takes longer to get those last drops out. once i open the gates, they seem not to want to close and tighten up all the way immediately. so i find i use the stall so i can wait a little more easily. i have used the urinal too, and i don't worry to much if there is a bit of dripping after since i have the pad. but honestly, i can't wait until i have no dripping to worry about. i hope that day comes.

the big issue for me seems to be ED. just not getting much response. twice i've had some response with levitra, but not much and only for a short time. i remain jealous of the guys with responses soon after surgery. next friday i have my follow up with the doc. i'm sure he'll be more pleased with my progress than me. from everyone here, i know i'm doing ok.

wishing everyone here well and any newcomers. it all seems to be working out ok.

I believe my doc recommends starting shots early. I have my appt this coming friday. Thanks for the encouragement.

I've started a number of threads, but figured this was the best to post my latest update.

(Does anyone know a way to merger your threads into one thread without messing up the chronology?)

Anyway, my doc recommends testing every 6 months for me. So here I am at a year since diagnosis and my 6 month PSA was .04. While I know that is technically undetectable, I did my usual (and not always so emotionally beneficial) in depth research and came up with a couple of studies that showed the predictive value of the ultra sensitive PSA assay for PCa recurrence. Of course, the most preferred group in the studies were those with PSA of .01 or less.

As such, rather than celebrating my "undetectable" PSA, my anxiety had steadily increased around my PSA concerns and finally I decided I could not wait until Sept. for another test. I went on my b-day and got a blood test and got the results back yesterday... PSA .02. So now I'm liking the trend and hopeful that the PSA trend downward continues and that perhaps the PSA nadir for me is just further out than the mean of 3 months.

I should also balance this perspective with the fact that my surgeon feels the ultrasensitive PSAs are not reliable due to "noise" in the readings. Therefore, he does not even do them. Since Dr. Catalona is one of the long term PCa researchers and developers of the PSA test, clearly I don't discount his input. The trick is finding the right balance between information and response to that information. For some of us "worriers" (not "warriers"), that balance is not always so easily achieved :)

Today I am celebrating that my PSA has gone down again!

For what it's worth, all 3 of my PSA tests have come back as .04, so that seems to be the lowest the 2nd gen testing will go, OR that is the lowest it will go for me.  Either way, it's down there and I don't worry about it at all, even in the dark of the middle of the night...

that is exciting news! I can only imagine feeling a little discontent with the 0.4 but thrilled with the number going down. may that decrease continue....