Dealing with surgical side effects

I had ED pre RP due to meds I took for bph. Post RP, erections were worse but I could have an orgasm with manipulation. I was dry after 13 weeks. Played golf after three weeks. Needing RT and ADT post op, sex is non existent and mild incontinence has returned , primarily urgency. I would not have had surgery if I had to make the decision today.
Bob

Here's another surgical side effect...this one we probably won't hear about first-hand for the obvious reason as described in this quote, but we need to not forget about these guys:

“What do you say to the guy who had a non-aggressive cancer and who dies of a pulmonary embolism post-op. Five out of 1,000 die within a month. They’ve not only not gotten the benefit, they’ve gotten the ultimate harm. We need to not forget about those guys.”

JackH said...
Nobody mentioned Peyronie's Disease as a PC surgical side effect...

Back in October, HW/PC had three different conversation on the top page by different members who were all dealing with Peyronie's disease.

I did in my 1st response in this thread, as well as shrinkage(I suspect that is more common than PD). Some folks get one or both and surgeons should warn men up front of that possibility, along with the many other likely or possible complications.

I was diagnosed with PC in mid April 2015, ~9/12 cores positive, all doctors agreed that surgery was the best option for my case...I was just turning 53yo, and had no ED issues before this.
Had 75% nerve sparing surgery on 8/5/15 by a surgeon who had performed approx 1100 RP surgeries previously. Doctor said it went well and he complemented me on my health and fitness...
I had very minor incontinence for about 6 weeks, only wore pads for a couple weeks.
ED was tough to accept, although I was given honest warning and reasonable statistics before hand, I went into this with eyes wide open. I was recently divorced and had a very active sex life going into this, fortunately my partner has been absolutely fantastic through it all. We started experimenting at about ten days post surgery, just fondling, etc. I was totally limp for two months at least, so I asked for pills and we started with Cialis, first time I tried this it didn't help but it gave me a nasty back ache, I stopped it after about 15 days because of the back aches...I then asked the doctor for injections. The gave me tri-mix and it worked great, I got a very hard erection first time but it lasted too long...it's always something! I also tried the cialis again after a while and got back aches again but the erections started improving quite a bit...I quit again because of back aches but continued with tri-mix. The injections have always worked very well except those times when I missed getting the needle into the right place, which happened a number of times. I finally got the injection process figured out and realized that the key is to remember when the plunger goes in easily you have the right spot. I also now have my partner stimulate me a little pre injection, which makes it a lot easier to find the right spot to inject. I also recently ordered Viagara from a Canadian pharmacy ($14 a tablet), and the Viagara workers pretty good, I can get stuff able wood with one 100mg tablet now...So, I've made a lot of progress in six months and I'm hoping to get fully natural erections soon...
I feel very fortunate and wish the Best of luck to all of you, cheers!

sheepguy, I hear you. From my own experience, and what I've gleaned from others, a major issue for many is the time recovery takes. I don't think it's a stretch to say that 'return to full activity' post surgery takes weeks or even months, not days. Heck, most surgeons tell us middle aged guys that hernia repair or appendectomy recovery is weeks. RALP is more significant than that. I was under anesthesia for over 4 hours, just getting past that little detail takes a while.

sheepguy said...
I'm not a surgery patient and I never will be. But I do find the responses interesting. As you all have heard before, for my profession and life style, incontinence is anathema to me. I would find it interesting to know what guys do for a living, since that would probably affect greatly ones definition of "continence"

Sheepguy, I'm curious: what do you do? I'm a pilot and mechanic. I'm also very active in my personal life (backcountry skiing, climbing, mountaineering, motorcycling, etc.).

I'm about a week shy of being three months post-surgery. Incontinence is down to between 10 and 25 ml a day, with the occasional excursion up to 45 ml. Leakage volume has been been dropping slowly, but steadily since catheter removal, but only if you smooth the curve with a polynomial; actual day-to-day data is more jagged (up and down). Sorry to geek out there.

As far as ED goes, I had very, very mild ED before surgery. Since surgery, I've had sort of half-errections for a few months now, but nothing full-blown. Haven't tried any drugs for it yet; waiting to see if it comes back naturally.

Post Edited (Andrewski) : 1/11/2016 5:46:26 PM (GMT-7)

Andrewski,

I'm a shepherd and professional sheep shearer. The shepherding requires 24/7 attention and work, lifting, running, stretching, jumping, climbing..but not continuous. Shearing, somewhat seasonal, about 3 months off requires a lot of constant movement..catching, shearing. 4- 2 hour runs / day maximum, some times less but pretty much constant movement.... think about 40 "small squrts"/hr. Makes for a wet, unconfortable smelly mess if you ask me. Of course you could as just a shepherd do the farm stuff a friend of my did after RALP...just worked wearing no pants!!! Kind of itchy and he had to wash the tractor seat...but he did it. LOL

Sheepguy,

I see your concern. That said, it doesn't sound unworkable. I was pretty active within a few weeks after surgery. 20 days. Post-surgery, My surgeon cleared me for all physical activity.

Yes, I was leaking a lot at first, but the bigger pads did a great job of soaking it all up, not permitting any visible leaks, and I didn't notice any smell (the pads are made to control odor as well). Besides, I'll bet the sheep smell enough to cover any odor anyway ;).

Not trying to pressure you at all; just suggesting that you might not want to eliminate surgery as an option, in case it turns out to be your best option health-wise.

sheepguy, lots of guys report that they are 'all the way back' physically and stamina wise in a few weeks. Thing is, and it was pointed out early in this thread, that the range of side effects and return to function is all over the place, and it appears to be random. No good explanation.

So, the risk is real, and needs to be clearly understood.

This inevitably raises the question: Why do surgery?????

For me, there were two major factors, and a lesser third one.

Major factor 1: Brachy creeped me out. The idea of having radioactive implants installed just seemed too weird. The external beam radiation methods were all at the 'just wrong distance' from home: close enough to make the round trip in 5-6 hours. Which meant, by my figuring, that both my wife and I would need to take all day off from work for every trip. The logistics just didn't work.

Major factor 2: I did want clarity of diagnosis and pathology. That really did feel important at the time. And it still is. That, and the not having to wait months for PSA nadir to happen.

Minor factor: I knew that I didn't want anything "new" or "experimental". I wanted something with a proven track record.

How about painful orgasms after RP, known by the medical term Orgasm-Associated Pain (OAP)? We haven't heard yet from guys who experience this, although it tends to be yet another frequently posted topic.

Enter the two words "orgasm" and "pain" into the HW search function and you will get pages and pages of results from the PC community here.

halbert said...
Jack, I did the search as you suggested, and I didn't find any comments by anyone who has had surgery since about 2013. There was one comment in mid-2015 by someone who was 3 years post surgery. Not many since. Might it be that surgery is getting better, and the side effect profiles are changing with the improvements?

Fair enough, halbert.

Enter three phrases: "orgasm" and "pain" and "2015" (enter all three, without quotations). There are many, many entries.

There is no doubt that surgery is continually improving over time, but not at the dramatic rate your post wishfully suggests.

halbert said...
Jack, dare I ask, what is YOUR history? Are you a surgery patient? And what happened? I've never seen you actually tell YOUR story. I assume you have one. If you did back in your early days on the forum, I wasn't here then.

Yes. (and yes, you may ask)

Here's one of my posts from a thread you participated in:

JackH said...
It's difficult to engage in conversations about overtreatment and AS with men who had favorable risk cases and have already been aggressively treated for reasons I have already commented on in this thread.

I feel that I was overtreated, and I don't want to hear that I screwed up...but when I look back in hindsight today, I understand that I simply was not exposed to good information for making the best decision. I can't change that for me, but I can help the next (low risk) brother through the door who sounds like he's also got the fear of the "big 'C'" in his eyes.

In my case, and probably a lot of others like mine, I thought I had done thorough "due diligence." But in reality, all I had looked at (albeit thoroughly) was the set of aggressive treatments. My so-called "due diligence" was incomplete. I never looked seriously, and nobody ever suggested that I look at active surveillance.

https://www.healingwell.com/community/default.aspx?f=35&m=3487697&p=4


Here's another one you also participated in:

JackH said...
I was overtreated. I did not need immediate treatment, but there I was six months after diagnosis undergoing aggressive, life-changing surgery. Surgery by a darn good surgeon, but unnecessary at the time none the less. NOBODY helped me think of anything else except getting the best treatment possible. Maybe someday my case might have changed to the point where treatment was appropriate. This DOES occur to about 1/3 of the men on AS...but NOT for 2/3. And those 1/3 who do go on to treatment, they have the same outcomes as those who go for immediate threatment. In other words, NO CONSEQUENCES.

And I was foolish. I spent my "due diligence" time researching treatment modes, not learning about scientific facts about the actual risks. I knee-jerk reacted to the word "cancer," which probably shouldn't be applied to favorable-risk cases such as mine. A term like "pre-cancer" would have been so much more appropriate, for me and so many other men, in not causing us all to fall down the slippery slope. Once you are "labeled" with the term CANCER, you get hustled down the path of treatment, then treatment for the treatments, etc. I was foolish...and I thought at the time I had done "due diligence."

https://www.healingwell.com/community/default.aspx?f=35&m=3446081&p=2


OK, I didn't provide many details in those cases. Here's what I posted in late 2014:

JackH said...
Uh...I'm not afraid to admit openly that I was overtreated.

I had a couple cores positive; none had very much PC. One was 3+4, others were 3+3. My PSA was low; under 10ng/mL.

There have been others here besides me who have also stood up to confess that they were overtreated for favorable-risk PC. It's certainly nothing to be ashamed of. If I can help others be better informed than I was before treatment, I'll feel like it wasn't all for nothing...otherwise, I kinda do.

https://www.healingwell.com/community/default.aspx?f=35&m=3225602&p=2


Here's how I generalized in another 2014 posting:

JackH said...
I had surgery for favorable-risk PC, so the way I describe it to people when asked:

"I was overtreated by an over-zealous medical industry, and with almost complete certainty I will never have to deal with prostate cancer again."

https://www.healingwell.com/community/default.aspx?f=35&m=3199346

I am now relegated to using PED-5s on a daily basis for an erection.

Sucks. I'm same age as you.