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Does anyone else regret having surgery? I do!

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Posted 4/25/2013 1:33 PM (GMT 0)
Chris, I know that sensation. For some bizarre reason I experienced it post surgery whenever I ate asparagus. It was a burning sensation with the feeling of urge to go but when I go to the toilet only a few drips come out. It would keep me up all night long and the following day I basically had to rest to recover from the emotional and physical exhaustion of the previous 8-10 hours. I say emotional because I would wonder if something had gone wrong and this was suddenly the new normal for me. I was lucky in that I figured out it was asparagus for some bizarre reason.

You could seek treatment to resolve the situation and perhaps you could even consider taking something to ease the emotional turmoil.
Posted 4/25/2013 1:36 PM (GMT 0)
What has your uro suggested about the stinging tip.
I mention this because"Stinging" suggests to me that there is raw "skin" in there which the right ointment ought to be able to help - same as right after surgery when you have the cath in. As mentioned I had trouble with what I called jock itch and used one med (Daktarin) to make it go away and now use the sort creams you'd use on a baby to prevent nappy rash.

Have you also tried different varieties of pads, some I have used have a very rough surface that irritated my sentitive areas almost continously, and I'm also a person who gets a mild skin reaction to latex (ie condoms rubber gloves etc) and to some clothing fibres, (Underwear or socks with polyester in them are bad)

As for urgency, meds ought to be able to help there too. I have the problem that for most of my life I always had to pee quite frequently I was lucky if I could ever go as long as 2 hours without needing to pee. (When I was about ten a kid from Seattle visiting me said I had a "Small tank") So post surgery I thought I was doing quite well when I was only having to go every 45-60 minutes.

(And to be clear I had things just about 100% under control after surgery and then I had to have SRT and it is since SRT that things have got worse.)
Posted 4/25/2013 1:57 PM (GMT 0)
ChrisR, you're a great guy. Don't forget that, pal. As another Hopkins surgical-alum and a G6 guy with kids, you and I have always had a ton in common... you'll overcome it, my friend. Take heart!
Posted 4/25/2013 1:58 PM (GMT 0)
Hey ChrisR
You can't sign off yet. I have to throw in my 2 cents.
So let me get this straight. You are healthy in all other respects but you have wet undies and a limp d***. Do I have it right?

I hear you buddy. I was incontinent after surgery, too. It affected my quality of life more than I could ever imagine. My purpose in life became pee control. Sex with leaking bits was not pleasant to say the least.

We're guys so we don't do the "ain't it awful" conversations. We jump into action.
Here's what I'd do.
Look into surgery to get yourself fixed. Look at a sling. It changed my life. It can change yours.
Research the AMS AdVance Sling. I love mine.
There is one downside to getting a sling and not needing pee pads: your proud package presentation will go down a notch. But, you can always stuff a Men's Guard down there for old time's sake if needed. wink

After you fix that. Look into injections. !!! Was that thump I just heard, the sound of you passing out and hitting the floor? Agreed. Sex will not be the same.
Seriously, go to the Franktalk site and read the comments and get info.
In general, the single/dating guys have found that they can 'play" like supermen. One guy in his 50's said he injects as he comes out of the shower and is like a teenager by the time he hits the sheets. His partner does not know about it and is amazed at his virility and vitality.
And there is no mess!!!
Play your cards right and you can be like smiling Bob on that worthless male enhancement commercial. (The one with the ladies lined up to sit on his lap.)

You are too young to be fretting about this. Git 'er done!
Good Luck!
Jeff
Posted 4/25/2013 2:12 PM (GMT 0)
Fabulous post Worried Guy - Chris I hope you are listening!!
Good luck.
Posted 4/25/2013 2:22 PM (GMT 0)
I have just spent a while searching the web for items relating to stinging soreness like you report and am even more convinced that a leaking problem that a lot of us have is simply being made worse by a treatable problem with the tissue by the penis hole (meatus).
So ask the doc about getting it sorted. When I spoke to my uro last month about my soreness/rash he was full of help, advice etc and I have not had any problems since then - touch wood :)

Alf
Posted 4/25/2013 2:40 PM (GMT 0)
I like the turn this thread has taken. We've all vented (and it was very cathartic for me) and now it's time to get down to fixing the problem. It's time to get the medical profession to fix the problems they have made for you.

When you talk to your urologist about your discomfort, tell him that some random guy on the internet who you've never met and whose name isn't actually PeterDisAbelard thinks the discomfort at the end of your Johnson when you leak is "referred pain" from your urinary sphincter or your bladder. That will thrill him, no doubt. Something continues to irritate your bladder neck or sphincter. It's time to figure out what that is.
Posted 4/25/2013 3:04 PM (GMT 0)
Chris - I'm in a similar condition:  Recently widowed, incontinent, ED.  I'm not happy with the surgical outcome, though with my stats, I would probably make the same decision, and do it again.  I recently had a sling installed (see prior posts).  It is the single best thing I've done since this whole PCa thing came into my life.  Look into your options re: fixing the incontinence.  I no longer leak - period.  Can play with grandkids/excercise, etc.  No leaks during sex/orgasms.  So - even though my "new" life isn't ideal, at least I've resolved one issue.  And my day to day living is slowly returning to something approaching normal, after 2 years.  Best of luck.
Posted 4/25/2013 4:19 PM (GMT 0)
So much for my statement about counseling/consoling. The passion you exhibited in your vent was shocking and set us all back, well me for sure and i bet most everyone. but we shook it of, responded splendidly. Its getting to be graduation time now, with dignitaries speaking here and there with wisdom. Just remember, Winston Churchills classic commencement speech at some famous top notch university. After much anticipation, as to what he would say, Churchill, rumbles up to the podium and rasps, " Nevah
nevah, evah give up" turns around and returns to his seat.
Posted 4/25/2013 5:46 PM (GMT 0)
I have regrets about my surgery 6 years ago, and wish I still had my prostate , and sometimes wish I had waited or maybe tried proton radiation rather than surgery, but also, I am glad that the cancer is out of me so I don't have to worry anymore.  I had negative margins and 0 psa's since 2007. 

I am 6 years post op from robotic surgery and I was very lucky in I picked a good surgeon and  I have no ED issues and can get rock solid erections without drugs, but I do leak some during sexual arousal and I ejeculate urine during orgasm, and yes it is frustrating, but I have learned to live with it. 

I am single also, and it is scary thinking about leaking on your partner, but I found ways around it. Here is what I do to get around it.

First thing I do is on the day I think I will be having sex , I will stay away from all drinks like coffee, soda, juice, etc, and I will only drink bottled water, and a lot which I color with "white" food coloring.  

This has two affects.  The first is that by drinking a lot of water all day, you will dilute your urine so much that if you do leak, it will not smell.  Secondly, by adding the white food coloring, your urine will be colored white, not like real seman, but pretty darn close,  so if you do leak a little,  it can pass for seman. 

 I know this sounds rediculous, but it really works.  The few partners I have had sexual relaciones with since my surgery, they have never had a problem with my dripping.   I did tell them that I had a vastecomy (which I did have 10 years ago before my cancer) and I told them I was sterile, so they didn't have to worry about getting pregnant, but I said nothing more about my prostate.  They never asked anything about my dripping of watery looking white liquid, and I never offered to explain it.   I assume that they just thought the white liquid I was dripping was seman and the watery consistancy was due to the vastecomy, but they never asked and it didn't seem to bother them if I dripped a little white liquid on them or the bed.

Now maybe if I dripped like a open faucet, it would be different, but in my case, it is just a few drips  , not a stream.  

My Uro told me that urine is 100% steril and if you get some in your partner, it can't hurt her one bit, so I knew ejeculating some urine wasn't going to hurt anyone.  Also, I only ejeculate dropps not a stream like I was urinating.

    

Posted 4/25/2013 6:14 PM (GMT 0)
Chris: There are a couple of things that you may want to consider....the number one priority is that you probably have a 99% probability that you are cancer free. Imagine going thru surgery, radiation, and you still have PCa (and other quality of life issues) as some on this forum have. I was very lucky and it took over a year and half to get my ED under control....but sex will never be the same for any of us. The feelings and sensitivities are different and I don't think that any of us feel the same as prior to surgery. We have a difficult time even initiating an erection. I am sure we all remember just looking at a pretty girl or thingking about sex would gets things hard. Those days are over for the majority of us on this forum and a good protion of the male population over 50 also! Finally, don't give up regarding the urinary control.....there are many things that can be done. And some things can actually happen by themselves. My father-in-law had PCa surgery in 1991 and has been wearing Depends ever since (0 control), but a month ago for some unknown reason he now has 95% bladder control! He doesn't know why this happened. I know that this must be rare, but things may eventually resolve or at least improve for you too . I went thru a period of depression as I believe we all have after surgery. You have indeeed been dealt a poor hand. But there are plenty of attracitve, smart, and lovely women out there who would love to be with someone like you and will understand your situation. They are out there!

I was initially a Gleason 7 so treatment was a sure thing for me. However, I was downgraded to a Gleason 6 after surgery. When I had full ED, I did feel at times that I over-reacted by immediately selecting surgery ..I just wanted the cancer out. But who new? I made peace with myself by just being happy that I was cancer-free. Good luck.

Bill K. from NJ

Age at Dx 58, now 60. PSA 3.3, 21% free PSA, Gleason 3+4, 1/12 cores pos., 30% of single core +, Normal DRE
Surgery 7/2011, Gleason downgraded 3+3, 10% involvement, contained, 67 cc prostate.
100% ED at one year...needed Bimix injections for 6 months, now at 21 months no ED.
All PSA's so far <0.015
Posted 4/25/2013 6:34 PM (GMT 0)
All,

Thanks for the strong response again. You guys are the best, and I am feeling a little better. I have a lot of external stress in my life right now unrelated to PCa. Maybe it all just came to a head last night. I was at my wits end with the constant stinging I have had for over 3 weeks. I made an appoinment with a URO for next week. I will try to get things improved.

I fully appreciate a lot of people are in much worse positions then I and would trade me in a minute. I am absolutely greatful for my prognosis and I don't mean to upset anyone. I just needed to rant.....

Again, thanks to all.
Posted 4/25/2013 7:11 PM (GMT 0)
ChrisR-

I think of this a lot...."Why Me" !!!  "Why Me" !!!

It has now been 2 years since my RP and I don't regret it at all....I just wanted that cancer out of my body !!! and hopefully that will be the long term outcome.

My biggest problem is ED....but I am dealing with it...ugggg !!!

I was married at the time of my RP and shortly after that, my wife wanted a divorce...I think she felt that my cancer issues was going to effect her more than she wanted so off she went......

After a year and with my divorce final, I started dating again and the ED issues were very heavy on my mind...I also like sex a lot and loosing control over that was very stressful for me.

Trimix helped a lot and I was finally able to have a good time with one gal that was totally understanding....that built my fragile ego back up a bit and I decided that I would not let ED hold me back...

I am now engaged to be married to a beautiful, understanding lady....that also loves sex... turn she believes in me and understands what I have been through.

Hang in there Chris !!! Keep moving forward....look at options and you can find happines again. You will find an understanding lady....you just need to look around...she will be there for you !!!

My thoughts and hopes are with you my friend !!!

Just remember.....things could always be worse !!!

Cheers,

Curt

Posted 4/25/2013 8:42 PM (GMT 0)
Hang in there Chris. This cancer BS is a pressure cooker.
Posted 4/25/2013 9:18 PM (GMT 0)
Hey Chris, look at this, not sure if any of these techniques can be applied in a procedure subsequent to the surgery you already had.

www.cornellroboticprostate.org/pdf/reconstruction.pdf
Posted 4/25/2013 9:26 PM (GMT 0)
Chris,
This is the place to vent so no problem! The majority of us (?) are diminished in some respects by this disease but we carry on. However, to go through a divorce for whatever reason at the same time is a life changing event that can be extremely difficult to overcome, but it can and needs to be.
You have proved that you are very intelligent by holding your ground with John T and Tall Allen and are a compassionate individual which is proved by your many helpful posts.
See if you can remedy to some extent the physical symptoms like the Yooper recommended and try to find a young lady that you can take into your confidence and talk to..try to make friends with the opposite sex and maybe forgo trying to hop in the sack right away...I know, it's a whole different generation but my wife was my best friend for over a year before we got married..Yes, she was a virgin--lol..I'm getting way too deep.
All the best to you young man!
Bill
Posted 4/26/2013 12:44 AM (GMT 0)
Chris, sorry to hear about your misfortune. I also leaked after surgery, 2-4 pads a day, and always leaked whenever I walked. After 2 1/2 years of not being satisfied with my quality of life I had an Advance sling installed and have been completely dry since. It changed my life and also had a huge impact on my sexual relations. It's something you may want to consider if the incontinenece is getting in the way of enjoying life.

Ron

Posted 4/26/2013 1:02 AM (GMT 0)
I suppose that you could say that I had gotten my DRE and PSA too late as I was first Dxed with a 511 and a G9, but if I had a G6 and your low PSA I would have said leave me alone to watch and wait. I soo totally agree with you that you were almost coerced into surgery and I really feel for you. Vent all you want, in my book you were given the smelly end of the stick. Now I'm gonna step out on a limb here and say that I've seen some numbers here that if they were mine I would choose active observation but that was their choice. . . . Q
Posted 4/26/2013 1:33 AM (GMT 0)
Hey Chris,

Clearly your post touched a nerve. Look at the responses!
What a great bunch of guys!
Now call the Uro tomorrow and ask about getting a sling! A year from now you can look back at today's post and say "thank you" for the dry undies - and the new girlfriend!

Jeff

Post Edited (Worried Guy) : 4/25/2013 7:52:16 PM (GMT-6)

Posted 4/26/2013 2:14 AM (GMT 0)
Chris, I hear ya

Many times I think that I never should have done the surgery. It has completely destroyed my sex life. nothing will fix it and even if mechanically/anatomically I could have normal sex, the sensation and enjoyment are not there. I think after 2 years I am becoming asexual, which is massively depressing.

re incontinence I was lucky, no major issues, a couple times i've had accidents while sleeping - humiliating, embarrassing and depressing. Also worried as to what will happen re continence when I get older. I've had a lot of dark thoughts, and being currently unemployed probably doesn't help.

Distraction works pretty well, I try to keep busy with hobbies so as not to think about things, although I do think about it every time I go to the bathroom, and every evening in bed. I also try to remember that it's not only about me. there are others in our lives who who be devastated if we checked out by choice.

I also think a lot about the 30 some years I have left and it seems awfully long to go without sex, knowing how nice sex is.

so in short - surgery sucks, I think now that I shouldn't have done it, it has completely changed my life and not for the best. We also forget why we did the surgery, and that was to deal with PCa, however high/low the Gleason number was. I think surgeons have no clue how impactful it is. they think, "oh ED, we have pills/injections/implants. Incontinence - we have kegels/slings etc..." they think they can fix anything, when in reality there's no going back to the way it was.

I also think that these results/experiences don't really change us as much as reveal who we are. I wish I could be optimistic and thankful like some. I wish I could accept my situation. I know my situation is not life threatening so far, so who am I to complain. I'm really angry about my PCa journey.

I have a lot of second thoughts, and buyer's remorse. maybe time will make it better.
Posted 4/26/2013 2:15 AM (GMT 0)
Chris, I would tend to agree with Peter DisAbelard when he said the pain at the end of the penis may well be referred pain from a problem higher up the urinary tract.  That's not uncommon.  I also have reason to believe that emotional pressure and tension can produce pain in that same area.

See what the urologist has to say when you see him.  It might be simply local irritation, but that kind of pain can also be caused by a kidney or bladder problem, with the pain being felt at the tip of the penis.  Good luck.

Posted 4/26/2013 2:40 AM (GMT 0)
Seems like reading this thread, there's more than one guy with Gleason 6 - Low Cancer cases wishing perhaps they should have considered AS vs. jumping into surgery. For those of us with Gleason 7 and higher, most don't have the luxury of trying AS. Might make a better case for promoting AS to future generations of guys coming aboard.

Trouble with surgery is the "crap shoot" angle that can't be denied. Until you go through with it, you absolutely have no idea where you will end up with the incontinence and/or ED issues. Doesn't matter what the "odds" say, or what the doctor says, each person's body reacts so differently to a complex surgery.

Hopefully future generations of PC guys won't even have to undergo the barbaric nature of such an invasive surgery. Perhaps better treatments will come along, or more men will feel comfortable that for most with a Gleason 6, the cancer is probably never going to kill them.

david in sc
Posted 4/26/2013 3:38 AM (GMT 0)
I feel your pain. Although I don't have the incontinence issue you have, sex with trimix can be a drag. No spontaneity. Man you had your surgery when I did! If you feel so bummed out why don't you have that sling for incontinence and penile implant at the same time? I know medicare pays for it, I assume private insurance does. If I was single and dating and wanting lots of sex (which I don't,  low T) but you do,  I certainly would go for it! Just make sure you find a guy whose done a thousand or so. You don't have to live the way you are now!!!! Things can be better!
Posted 4/26/2013 5:18 AM (GMT 0)
Chris-- Sorry friend.

My advice from experience. Don't give up,keep looking for answers.

I used lamisil cream for a short time, 3 weeks, when I had some leaks. It stopped the burn from jock itch on the old soldier. I lather it on all day.

I used pads again for 3 weeks.

I re started kagels 3 or 4 times a day.

I don't drink much after 3 pm.

No booze or much caffiene

it all got better.

God Bless and good luck! Keep trying....
Posted 4/26/2013 5:19 AM (GMT 0)
Also-- I agree-- go back to the surgeon for advice!
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