Blog: 8 Reasons Why Sexual Desire Is Reduced After Prostate Surgery

RCS said...
Maybe doctors have changed since I had my surgery ..... my doctor informed me of the possible SE's.

And, if he hadn't, my reading sure as heck did. It is really hard for me to accept the idea that guys would agree to any kind of elective treatment with out looking into the possible side effects.

Island Time ..... I agree with your thoughts on "conspiracy by doctors". Someone's pushing an agenda.

Not me. Most guys are not like a lot of the guys who join this forum, IMO. I think most are like my friend who got PC not long before I did. All he knew was they told him he had cancer and recommended surgery. He knew nothing about Gleason scores and seemed to have no interest in learning, that's what his trusted docs were for. He was an RN who had worked cancer wards, and as he said more than once, " cancer is like a snake, and there is only one way to deal with it: cut it out of there ASAP.". Most guys who work in construction or in business- or gals for that matter- don't go to their doctors to argue with them, and have no plans to start a big research project and become medical experts just because their doctors say "you have cancer, and we need to cut it out before it spreads, we are hoping it is early and there is a good chance of a cure". I agree that things have changed some since the internet, but still most guys just don't have the time or ability to research and become experts in this subject once they get this emotional news. Most go by what their docs tell them, even if they get a couple of opinions. And their docs are not telling them most of this stuff. Mine did not.

You know, we should do a poll, though this forum is probably not representative of th general population. ( and remember, a lot of guys 1st come here after they have already had treatment). That poll would go something like this: Of those of you who only talked with your one doctor, your urologist, when he told you you had PCa:

1: Did he tell you you needed surgery?
2: did he tell you that either AS(if you qualified) or RT were possibly almost equally good choices with probably lower SEs?
3: Did he tell you that it was a more than reasonable likelihood that you:
A: would never have another natural erection?
B: you might well never have another usable erection, period, and in fact you might require yet another surgery to install a pump or two- one to pump up your penis and one to stop the leakage of urine?
C: Whether you ever have another erection or not, you might never feel real sexual pleasure again and even have painful orgasms?
D: you might urinate on your partner during foreplay and/or orgasm?
E: If your injections actually work, you might end up in the ER for emergency treatment of a 4 hour erection
F: You might end up with a noticeably shortened penis or
G: a penis bent at a severe angle?
G: you might get some combination of all of the above?

I think that would make for an interesting poll. And I'm betting that the majority never heard about most of the things on that list unless they went looking for trouble on the internet, and then decided to believe what they found. Certainly I did not.

Heck, we can do just one or two right quick: How many of you guys here had your surgeon say: "I think you should have surgery, but keep in mind that while you may or may not be able to have an erection again, there is a reasonable chance it will noticeably shorten your penis? And/Or bend it at an unusable angle?

Post Edited (BillyBob@388) : 8/6/2017 2:48:52 PM (GMT-6)

halbert said...
There is a certain level of denial in all of this. To think that we could mess with an essential part of our reproductive/urinary anatomy without ill effects is a stretch. Now, the reality is that the average person's ignorance of basic anatomy and body functions knows no bounds. Most men don't know what their prostate is or what it does. And, truth be told, most men don't want lots of information from their doctors, at least not till something doesn't work. The doctors are only giving us what most of us want. Those of us who want more are rare.

Exactly, Halbert, most men have no clue what a prostate is or where it is or what it does, and most don't want to know, that is what their doctors or for. All they know is there is some cancer in there and they want it cut out so they can live to make love another day, and enjoy other things about life. But you can bet that if they thought there was a good chance they were never going to have sexual pleasure again, and especially if they were some alternative treatments with a much better chance of not having those SEs- or possibly no treatment at all (AS), I'm betting they dang sure would want to know about that. Tell most men that there is a reasonable chance you will never have a natural erection again and we might shrink your penis while we are at it, and I think that would really get their attention resulting in a whole lot of guys saying, " hold it doc, there just has to be another way!".

Am I crazy to think that? I can say I was never told about most of the SEs or the odds of having them. I was only told of highly probable total ED, and given the impression that was not that big of a deal because it was easily fixed. It was NOT easily fixed, plus there are other problems from my list. Now don't get me wrong, I am NOT claiming ignorance, I knew(from my own research) the possibilities and should not have taken the risk, I knew better. But I don't think most guys fall into that category. Most guys are ignorant of most things on my previous list from my hypothetical poll, until they have some of them, and their docs are not telling them before hand, because they would be far more aggressive in searching for other treatment possibilities if they did.

bigal said...
First a great discussion has been started by this post so thank you. The removal of a man's sexual existence seems like one of the worst things that could happen to a man. That's not some caveman response but it is much deeper then probably anyone of us really completely understands. It's understood that many lives have been saved on the physical level through surgery but how many have been destroyed on the emotional level? Of course that is a taboo subject "emotions" because men are not really allowed to have them. Sometimes I wonder if somehow the world scoff's at men who lose their sexual prowess. Almost like "good serves you right".How many demeaning jokes and cuts have you heard about impotence over your life time? How degrading a thing to have happen to a man to be "impotent". Trying to approach this subject on a logical level is difficult, perhaps that is why the surgeons avoid it in any depth. The logical thought is the cancer must be removed, but the devastation left behind is far to impossible to fully comprehend so best left alone. This is like being told you have brain cancer, which can be removed, but it is going to leave you blind. The medical world needs to find a way to get rid of the cancer without destroying the man's life. That is their challenge. I'm sure there is a counter world struggling to keep the surgery factory alive and well because right now it is the best answer to the fear of the cancer spreading that permeates a man's mind more than the fear of impotency. This whole prostate thing is truly a monster for men and there families to deal with, because it is a subject that can't really be discussed and brought into the open. It's a secret that can only be shared with the closest of the closest in your life. Terrible situation for a man to be placed into and very little attention is being placed on it. The subject doesn't yield profit to deal with the aftermath of a secret subject

Very well said, BigAl!

Redwing57 said...
Quite the interesting discussion!

My dad was one of the low-info types. His doc said, "Well, there's cancer in there. We need to cut it out.". My dad says, "Ok". And that was it. He wasn't a candidate for radiation due to serious BPH and already under treatment for that, but they never even talked about it.

Anyway, he was dismayed at the ED result. Actually had no idea that could happen. Never asked. Wasn't told.

When I told my parents about 10 years later that I'd been diagnosed with very serious case of prostate cancer, there was a long pause. My mom said, "Well, you better get a second opinion. Your dad had it, and 'they took his sex'.". Odd phrasing, but clearly they had no idea and it was a HUGE problem for both of them.

There are guys like that. Doc says "do this", so they do.

You're darn right there are, I suspect the majority of the population. I know a bunch of guys over the years who have had PCa, but I'm the only one I know that comes to this or any PC forum, far as I know. Most of the PC guys I have talked to do not even know what their Gleason was. We are not a representation of average PC related knowledge at this forum, not at all. In fact, having spent 36 years in surgery with some of that time most weeks spent working with Urologists as they removed prostates among other cases, I can assure you that most OR personnel, including many surgeons and other physicians, do not know as much about the subject of this thread as do many of this forum's participants. Obviously the Urologists do, but most of the rest? Nope. And the average guy sitting in the Uro's office? Totally ignorant of this subject, and counting on the URO to tell them what they need to know.

As I look back on my experience, I realize just how good my diagnosing Uro was. Here are a few traits I found out about him, that combined led me to where I am:

1. I always remind myself that he is "the only guy in town" in a rural Illinois small town.
2. I was told by a good friend--who for a lot of years was a nurse at the county health department--that she knows for a fact that he never hosted dinner parties because his dining room table was covered with the latest publications covered with underlines and highlight markings. This suggests to me that he DID stay up on the current research.
3. At the time of diagnosis, he met with my wife and I, at the end of the office day after he sent the staff home and gave us as much time as we needed.
4. He told me right up front that he did open surgery, and freely offered to refer me to both a RALP surgeon in St. Louis (2 hrs drive away) and a brachytherapist in Indianapolis (2 hrs the other way) and then said that he'd have no problem doing my post treatment followup.
5. He gave me his home phone number and told me to call if I had more questions.

How rare is that?

He is one of the reasons I will never dismiss small town docs as a bunch of ignorant fools. I don't know how it happened, but that particular small town was blessed with some top notch medical talent, with at least one true world-class surgeon (hand surgery), and several others--including this Uro--who are well known.

To get back to the topic, it doesn't just apply to PC. Most of us do trust our local docs and our local facilities to treat us. It's known, it's familiar. PC is hardly a rare or unusual disease, so searching far and wide for specialists is unusual. It's different for other conditions. It does appear that most docs DO know when they are outclassed by a rare condition, and many people do know that if they are faced with something big and ugly to go to the major facilities--but even there they take the luck of the draw (and usually come out ok).

PC is that interesting and challenging condition that is both frighteningly common AND that requires a high level of skill to treat properly. It's not a stretch to say that in every group of men over the age of 50, there is at least one PC survivor. But even in that group, it's rarely talked about in detail--and covered with a joke of one kind or another.

RCS, we've gone around on THAT question many times in here. My view is that doctors should be responsible for educating patients, with a massive caveat: Many, many patients don't want to be educated. I mean that. They really don't want to have to deal with the decision making process.

So what do the doctors do? They put on their white coats, give an opinion of what is best for the patient, and it's on to the next room. And, the insurance companies are complicit by requiring them to see patients for 10-15 minutes at the most.

And on it goes

Good question, what is the relationship we should have with a doctor? What are their obligations to us?

In my humble opinion, doctors are meat mechanics. They use the same techniques auto mechanics use to fix a car. What's the complaint (presenting as...)? Work down the flow chart to find the root cause (a vacuum leak can look like a bad sensor, for example. What's the real problem?). Propose a solution, do the work. If I take the car in because it's making a funny noise, I expect a call later saying the framitz bearing is crenelated, or whatever. It will cost $$ to repair. Yes or no, and do the work.

Let's say you take your car in to the dealer because it leaks transmission oil, and they repair that by removing the transmission. Would you be satisfied? "We cleared that leak right up for you. The car won't move anymore, sorry about that. Oh, we didn't mention that would be a side effect? Well it is. Buh-bye.".

Same process with doctors. The "machine" is quite complex and varied, so the diagnosis is much less certain, the effectiveness of the repair can be little more than a hope. The degree of side-effects you will experience are almost completely unpredictable. Yet people nearly worship doctors, with unquestioning trust. They tell you that you have a life-threatening problem only they can fix, and you should do it their way. Well.... maybe...

No, I don't trust doctors, never have. I don't know how to help others have a healthy level of skepticism when interacting with doctors. People really need to question what they hear from anyone.

A great aspect of this forum is providing questions to ask of our doctors. Yet a vanishingly small fraction of patients ever interact with a forum like this. There's what, 150,000-200,000 guys diagnosed every year? We see how many new forum members here in a year? A couple of hundred maybe? That's probably a high estimate. So we're not reaching many, unfortunately. Probably a few times that many may find this site through a search, lurk for a bit, and move on.

PeterDA, man, you always crack me up! Geez, what a writer's gift you have...

You're right. This disease, and its treatments, are kind of incomprehensible at first. When I found out that the euphemistically-named "hormone therapy" (aka 'chemical castration') was in my future, it was kind of paralyzing. I thought, "Really? That's a thing? They really do that?". Yep, creepy.

That was a completely new concept, and very hard to wrap my head around. Hence being frozen to my sofa the morning I was to receive my first injection. Going for that first shot was probably the greatest single act of will I've ever had to summon.

One thing I forgot to emphasize during my previous mostly negative posts: There is surgery, and there is surgery. We all know we that if we have to be diagnosed with PC at all, we would prefer a G6 to a G8-10. So it is worse luck all the way around to have the higher Gleasons, which also means probably worse outcomes with the surgey, it's cure rate, and the SEs.

So if we go in as a G6 we are far more likely t get the nerve sparring. I think we are also extra lucky if on top of that we go in with small prostates, giving the surgeon more room to work in, less chance of accidental damage. So if we have all of that going on, we are far more likely to be happy campers when it is all over. Both a better cure rate and a much lower SE rate, seems to me, than the old wide cut. My surgeon told me he was going to have to cut wide. I have not been particularly happy with the SEs, plus I probably did not get the hoped for cure despite the wide cut, what with the positive margin and SV+ etc. Probably most G6s with surgery end up a lot more satisfied with the entire process, just as they should be happier to be G6 in the 1st place.

So people like me might end up a lot less satisfied on average, about things that many of us may have had no real idea were likely to happen. Since many of our docs did not make this stuff real clear.

But that is NOT to say that the G6 and 7s with full nerve sparring surgery guys do not also end up with some life altering and very unpleasant SEs. They do. Just probably far fewer of them.

garyi said...
<<<But that is NOT to say that the G6 and 7s with full nerve sparring surgery guys do not also end up with some life altering and very unpleasant SEs. They do. Just probably far fewer of them>>>

Amen to that, and I count myself most fortunate to be one of them.

Almost a year and a half of study, two months on this forum, appointments with at least ten urologists, phone conversations with another ten, an MD degree from Google and about eight books. Still I knew a very little. I did find that RO's are much more open minded than Uro's and explain potential SE's in more depth. I shook the tree hard to see if I could have radiology, believing the old wives tale about 70 being a cut off age for surgery. Turns out even the best RO's in the country set me straight. Tall Allen was his usual amazing self with help and advise.

I had a barbaric TURP a year and a half ago, resulting in a PCa diagnosis. I finally found an angel of a surgeon, who didn't explain the SE's in much detail, but did an outstanding job. I'm mostly dry, I feel some stirring in my johnson, and I hope to start using it in the near future for things other than urinating.

The biggest turn-off is all those belly surgery scars....so far. Thank you dear Lord, luck, and Dr. Gonzaglo.

Remember that potency was goal #3 for most of us, after getting all the
cancer and minimizing impotence.


PCa changes everything!

A stirring in the Johnson is a delightful result, particularly if combined with no ejaculation of urine and being mostly dry. Alas, for me, 3.5 years out, I only have the mostly dry part. There has been nary a stir. I probably should go try those needles in the Johnson again, to see if there are any more usable results with any less discomfort/ache. But I abandoned all of that after the 1st year, along with big $ pills and SEs. Seemed like more torment than it was worth. OTOH, despite surgery ONLY and a mediocre to poor path report, I am still far from a BCR 3+ years out, as of a month or so ago. Oh the glories of the wide cut, I suppose!

Wow guys ain't we coming down a little hard on the doctors. Most of us have the option to switch to a different urologist if we don't like the guy we're seeing I did and I'm not so sure it was all the doc's fault he could only spend 15 minutes with me so the frickin CEO of the hmo could make some more money to add to his millions!!! Wonder how our doctors who have spent hundreds of thousands of dollars and hundreds of hours training would feel about some of the posts here after treating us one way or another? Just my humble opinion I think most doctors become Doctors because they care about people and health

Garyi,
Same as you, I had TURP on June 1, 2016 which lead to accidental diagnosis of Prostate Ca, Gleason 6. Prostate biopsy, a year ago today, confirmed it but with higher Gleason of 7 (4+3). Had RARP on November 2. Thankfully, post op Gleason was downgraded to 3+4 with Ca organ contained. Recovered urinary continence in 3 months with still some stress incontinece which is tolerable and I can live with. On ED side still absolute zero with no feelings, no stirring of any kind, with non existent orgasm. Did not have any success with Cialis, Viagra, VED. Nothing even usable for play, forget penetration. I April, started TRIMIX which gives me erections most of the time but I lost so much length and girth that my erect penis is pathetically small with nothing sufficient for penetration. In soft state, I just have second navel down there where penis usd to hang.
Before surgery never had any problems with achieving and maintaining erections as long as my wife and I wanted. I am healthy, very active person, not on any meds, non drinker, non smoker, not overweight. I am not desirable man any more.
My problem was, I always blindly trusted doctors and never questioned their advice thinking they have best patient interest on heart. HOW WRONG I WAS?
MK