Response (lack) to sexual stimuli post prostatectomy

RobLee

Possible explanations

I suppose that age overlap you mentioned and its reduction in testosterone could be a cause, but I think more likely it would be the psych reprecussions of ED (to keep it short, no pun intended).  ED is the most common SE from RP, and surgery in general is physically exhausting as well as its traumatic effect upon our personal body image and our sense of well being.

I do remember in the few months following RP that it was more difficult to get things moving so to speak, but I needed the tension release.  Granted there was a lot going on, including the after effects of anesthesia and dealing with incontinence and such. Lets  just say that EVERYTHING became more difficult and required more effort.  The "erectionless orgasm" became my best friend. Of course, once HT kicked in, nothing.

Again, it is entirely possible that simply worrying about it might be the largest contributor to the problem.

Clevelandguy

Mental?

Hi All,

I know with me it was a lot mental and until I got the confidence through healing it can really effect you mentally.  For me a lot of the stimulas that starts the errection process is visual and if you feel no stiring in your groin area when exposed to the stimuli it can mess with your mind and frustrate a person.  For me at least when you go from limp to semi hard then pretty hard the confidence builds until it's back to normal as it was before your surgery.  Yes I feel the mental aspect of going from not being to perform when you need to can effect your outlook on a lot of things & it can depress you and make you doubt your manhood.

Phaedrus questions:

1.  is this part of the normal or usual healing process? Lack of sexual release causes muting of response to sexual stimulation?  In my case yes it was.  Your confidence as you heal hopefully will grow.  The old saying use it or loose it applies here.  Tell your partner that they have to help(sound like fun to me).

2.  will this, like the ability to achieve erection, come back given more time?  In my case it did, but everyone is different.  As long as there was not a lot of surgery damage it should come back, timeframe is shorter for some or longer for others, no set timeframe.

Dave 3+4

MK1965

Clevelandguy said:

Mental?

Hi All,

I know with me it was a lot mental and until I got the confidence through healing it can really effect you mentally.  For me a lot of the stimulas that starts the errection process is visual and if you feel no stiring in your groin area when exposed to the stimuli it can mess with your mind and frustrate a person.  For me at least when you go from limp to semi hard then pretty hard the confidence builds until it's back to normal as it was before your surgery.  Yes I feel the mental aspect of going from not being to perform when you need to can effect your outlook on a lot of things & it can depress you and make you doubt your manhood.

Phaedrus questions:

1.  is this part of the normal or usual healing process? Lack of sexual release causes muting of response to sexual stimulation?  In my case yes it was.  Your confidence as you heal hopefully will grow.  The old saying use it or loose it applies here.  Tell your partner that they have to help(sound like fun to me).

2.  will this, like the ability to achieve erection, come back given more time?  In my case it did, but everyone is different.  As long as there was not a lot of surgery damage it should come back, timeframe is shorter for some or longer for others, no set timeframe.

Dave 3+4

Mental, mental .....

This is confirmed one more time that RP renders guy’s penis unusable. Not feeling anything down there while  being stimulated physicaly or mentally (watching porn) means you can not reach point to release tension, you can not orgasm and if by any chance orgasm happens, it is totally worthless . Many guys are not even sure it happened. I am one of them too. 

Why watching porn does not produce erection?

Because, penis is totally disconnected from the brain thanks to RP And urologist who are “saving our lives”

MK

hewhositsoncushions

Hi

Hi

Regarding surgery side effects, I think there is something here about "confirmation bias" in that we pick up on the events that happen to us that match our biases. It is a hard trap to escape. With me, my confirmation bias is that I am convinced I am ****ed no matter the actual hard facts as I am filling in the gaps and ignoring facts.

Regardless of your situation, there is only one way out of this - acceptance of the basic hard facts and setting up a strategy and outlook to make the most of what you have.

Constant dwelling on the negative is the least healthy option.

I am sure (confirmation bias again ) my cancer arrived / returned (?) due in no small part to the huge self induced stress I have endured for a very long time. Oddly, I am starting to get a sense of perspective now.

What can I not control? What the cells in my body decide to do.

What can I control? Mental attitude, diet (IF and potentially keto), Vitamin D, Aspirin, excercise, meditation, getting my affairs in order, planning a trip to Amsterdam to try some shrooms (medical / spiritual of course), pushing hard for the best treatment, enjoying every moment with my family, choosing not to be bothered by work and so on.

These are my goals, not where i am now but I know that even og they help 1% that is better than nothing.

Something to bear in mind when dwelling on the negatives...

C

Clevelandguy

Not true

"This is confirmed one more time that RP renders guy’s penis unusable."

Not true MK, you had an RP with a very bad outcome.  Most guys like me do recover, I don't have any problems now, it just takes a while to heal after surgery. Orgasms are a little different but still good.

"Because, penis is totally disconnected from the brain thanks to RP".  

The brain is a powerfull organ, don't know if your problem is mental or physical, or both, but I feel you should sort it out with a good psychiatrist and urologist.  Hopefully they can help you MK.

Dave 3+4

MK1965

Clevelandguy said:

Not true

"This is confirmed one more time that RP renders guy’s penis unusable."

Not true MK, you had an RP with a very bad outcome.  Most guys like me do recover, I don't have any problems now, it just takes a while to heal after surgery. Orgasms are a little different but still good.

"Because, penis is totally disconnected from the brain thanks to RP".  

The brain is a powerfull organ, don't know if your problem is mental or physical, or both, but I feel you should sort it out with a good psychiatrist and urologist.  Hopefully they can help you MK.

Dave 3+4

Thanks Clevelandguy!

Thanks Clevelandguy!

i need psychiatrist as much as you need gynecologist.

MK

RobLee

MK1965 said:

Mental, mental .....

This is confirmed one more time that RP renders guy’s penis unusable. Not feeling anything down there while  being stimulated physicaly or mentally (watching porn) means you can not reach point to release tension, you can not orgasm and if by any chance orgasm happens, it is totally worthless . Many guys are not even sure it happened. I am one of them too. 

Why watching porn does not produce erection?

Because, penis is totally disconnected from the brain thanks to RP And urologist who are “saving our lives”

MK

Attitude is everything

I managed to acheive MANY orgasms in the months following my RP.  Granted, they were erectionless "pelvic" orgasms, but they did indeed release the tension. As I said earlier, everything required a LOT more effort.  And I never lost interest in sex, not until well after the Lupron kicked in.

The thing about HT is that one doesn't miss sex at all. I can barely even remember what it was like, and in fact wonder why the heck it was so important before. But I know the RP, RT and HT have saved my life, and that is certainly more important than anything.

Clevelandguy

MK get some help

MK I hope you get some professional help, your mental outlook on life is troubling.  I wish you peace of mind so you can move on with your life.

Dave 3+4

Grinder

"kegel training with a HOT physical therapist"

Hey RobLee... do you happen to have her business card?

just kidding... i think.

Grinder

pituitary gland.

The pituitary gland is a pea size gland at the base of the brain and it governs a lot of sexual stimulation, response and hormone production. Oddly, when eunuchs were castrated, they still had sexual desire because of their pituitary gland, but could not act on the urges in the caliph's harem because their testicles had been removed.

The penis and testicles get their orders from the pituitary, not the other way around. And the pituitary is driven by the stimulation perceived by the brain. Even if genitals are stimulated, or the eye perceives sexual stimuli (porn), or the touch of a woman, it all originates in the brain from the neural activity sent to the brain, which then sends signals to the sexual organs. Genital stimulation sending signals to the brain, but affected by RP, is just one of many methods of creating stimulation sent to the brain. There are still many more, including fantasy in the cerebrum that can trigger sexual stimulation.

What affects the neural activity sent to the brain from various senses, and affects the brain's "information processing" and the appropriate response ? Lots of things... drugs both legal and illegal, depression, chemical imbalance, mental disorders, age, illness, etc. and often underestimated... circulation. Oxygen is a must for neural activity and cellular activity and organ health...

 "The primary role of oxygen in cellular respiration is to A) yield energy in the form of ATP as it is passed down the respiratory chain. act as an acceptor for electrons and hydrogen, forming water. C) combine with carbon, forming CO. ₂ D) combine with lactate, forming pyruvate."

 That is a lot of jargon, but the point is, the circulation of blood with oxygen is the most essential element for brain, nerve, organ and cellular health.

Then there are the artificial means of creating erections without the brain and pituitary involvement... the vacuum pump and trimix, which cause a direct stimulation of the mechanisms that cause erection... the filling with blood of the corpus cavernosum etc.

So when Cleveland Guy says a problem may be "mental" , it doesn't just mean a psychological condition... it  means the brain and pituitary, for various reasons, are not processing information and/or not making the appropriate response to that information.

So everyone may have  different reasons for dysfunction... and require  investigation. It is not an indication that someone is "crazy", it is an indication that causes for dysfunction have to be investigated uniquely for each person.

 

VascodaGama

The pituitary and its sexology affairs

Grinder,

This is a great description of the pituitary affairs in ED and on sexology. I like to read the details.

Best,

VG 

RobLee

Grinder said:

"kegel training with a HOT physical therapist"

Hey RobLee... do you happen to have her business card?

just kidding... i think.

Kegel training with a HOT physical therapist

Actually I have her resume... somewhere. 

Unfortunately, upon my last visit to Uro for a Lupron shot, she had moved on.

Naturally, it was all business, but she was very friendly as well as professional.

All of that helped, but alas, I was still incontinent.

MK1965

Dysfunctions after RP

In this highly pro surgery pro RP forum, all dysfunctional problems are labeled as mental which sound like an insult on someone who is fighting to overcome dysfunctions which followed RP surgery As in my case.

Before RP surgery, I never had problems with achieving and maintaining erections as long as needed. I was 99.99% functional all the time. Never before took any sexual enhancing drugs and always had rock solid erections. I am healthy and very active guy with no High BP, no DM, with perfect lipid profiles, perfect liver function tests, perfect kidney function, not overweight, watch what I eat and how much etc. etc.... Only labs that are not okay are related to my testosterone levels TT, free T, SHBG.

And, I am already waiting 16 months for something to start. I did not loose my income (not porn star by profession), have good satisfying job where I perform very well with multiple recognition from my superior, working from home full time for very reputable and worldwide know institution.

Grinder, my only stressor would be post RP recovery on AXIS 3. I did not experienc any other change not just in last year but in last 10 years when my daughater graduated from college. So, in no way I fit into any mental cathegory.

Do I feel bad about my recovery? Yes, I sure do. Am I trying to recover? I sure did and still doing, still trying and followed all directions from my doctor. 

In my case, NO TREATMENT WOULD BE BEST TREATMENT. I admire one guy from my support group who declined surgery and was not accepted into AS but he decided on NO TREATMENT and is already 10 years past initial prostate Ca diagnosis. He had 10 years of happy life and free of SE.

QoL is very important to some people.

MK

 

RobLee

Thumbs up!

MK, thank you for your calm, rational and informative response, in which you provided us with some background information on yourself and your experience.  I think what you need to realize is that not everyone falls into the favorable outcome category of any form of medical treatment. Every form of treatment has some group that experiences some side effects. Radiation has theirs, as does AS and watchful waiting. I'm sure that "doing nothing" also has a number of horror stories.

It is difficult to not sound bitter when telling one's tale when you are one of the small percentage of people who had devastating side effects from a procedure. Personally I fell into the 5% of RP patients who were left fully incontinent. And even after getting the AUS so that I could undergo adjuvant radiation following RP (another small group of RP patients) my implant required immediate revision surgery, putting me into yet another small percentage of failures. And even though there are only around 100,000 men in the world who have the AUS, I still have to wear a pad at all times, even in bed.

I'm not crying in my beer here. But just to let you know, when I post in other forums about how my condition came to have progressed to the point where I required such extensive treatment, I have to hold back on my bitterness and try to be less emotional. And STILL I get flamed and criticised for my negative attitude. And I know I have seen your screen name on those other forums. And I haven't even gotten into the matter of ED or sexual dysfunction. I've pretty much thrown in the towel on that one already.

Look around here at the other guys who have had a favorable prognosis going into treatment, yet came out with significant complications resulting in a lifetime of worry regarding biological recurrence to say the least. I have tried to hint to you that you are fortunate that your ED seems to have been the worst outcome from your surgery. No one is trying to label you as having a mental illness. And you have no way of knowing that if you had chosen differently... some form of radiation rather than surgery, that matters may have come out any better or possibly even worse.  And of course you must realize that there is no going back and changing anything in the past.

The folks here are trying to HELP YOU accept what has happened to you and be able to rise above it and develop the capacity to enjoy the rest of your life in spite of your condition... which, I must say, I would gladly trade places with you any day.  I said "thumbs up" because you have finally opened up and shared your experience with us, rather than hiding behind a sheild of cynicism and despair. You have lost something precious to you and are still going thru the grieving process. That's why I say "attitude is everything". I am not happy with my experience either, but I realize that one of the few things that I actually CAN change about it is how I think and speak about it. And (I think) that's what we're trying to tell you.

Clevelandguy

Very well said

Very well said RobLee, yeah I am left with a little stress incontinence and will have to wear a pad probably the rest of my life.  But ya know that's OK with me if that's all that happens.  Don't know what is in store 5-10 yrs. down the road as far as Pca for me but ya have to move on with life and count your blessing.  I picked my treament and will have to live with the consequences. My five little scars & I live a normal life with very little problems considering I had my Prostate removed.  The robotic surgery & radiation treatments available today are the best.  Maybe in 10 yrs we will look back and say how crude they were back then in 2018.  Good luck to all the survivors.......................

Dave 3+4

RobLee

Clevelandguy said:

Very well said

Very well said RobLee, yeah I am left with a little stress incontinence and will have to wear a pad probably the rest of my life.  But ya know that's OK with me if that's all that happens.  Don't know what is in store 5-10 yrs. down the road as far as Pca for me but ya have to move on with life and count your blessing.  I picked my treament and will have to live with the consequences. My five little scars & I live a normal life with very little problems considering I had my Prostate removed.  The robotic surgery & radiation treatments available today are the best.  Maybe in 10 yrs we will look back and say how crude they were back then in 2018.  Good luck to all the survivors.......................

Dave 3+4

Thanks Dave

Thank you... it takes me an hour to write something like that.  I am dyslexic, which is probably why my sentences seem so awkward.  I'm glad my efforts are appreciated!

I should point out that in addition to me being in a small percentage of a small percentage of RP patients, just three months after my RP, my wife was diagnosed with lymphoma.  Not just any lymphoma, but stage 4 primary bone lymphoma.  Less than 2% of all lymphoma patients are diagnosed as primary bone.  What are the chances of that?

I have a blog here, where I detail our experiences. Reading some of the other blogs here on CSN I consider myself fortunate that both my wife and I had what are some of the more treatable forms of cancer. Cancer changes lives... and NO ONE is immune to it.

Grinder

kudos

I have to express my admiration for your comment as well, RobLee. I also have to express appreciation for your willingness to share a more adverse experience with serene reasoning.

I have recently reunited with an old friend from my school days, and have just discovered he had RP nine years ago, and he has an AUS installed. And that means he has ED as well. He is even dating my sister now, and  she knows from my experience about the ED, but they are still enjoying each other's company and are forming a relationship... For my wife, my sister, and most women I know, relationship is the most important thing. In fact, actual coitus falls behind relationship, security, intimacy, even cuddling and hand holding. It's the men who prioritize coitus, until we get a bit older and dont make such a big deal of sexual gratification.

The other two guys i have known personally with PC i have mentioned before. A friend who had successful RP at IU Health and talked me into it, he knew the crazy time i was having with catheters and Flomax and a Staph infected massive prostate. I'm grateful he did.

And the other, my neighbor, who died from PC... a long lingering experience that saw him dwindle from an energetic, amiable, robust guy who would do anything for anybody and raised race horses, to an emaciated living corpse on a respirator, and finally a coffin for a home, and six feet under of dirt for a property, and a tombstone for an address.

All of us writing in this forum... how can we not be grateful? We all started our treatment in time unlike my neighbor. And just twenty years ago there was no Cyberknife or Robotic nerve sparing prostatectomy. Who knows what advances may be coming  to improve both PC treatments and treating past side effects from previous PC treatment.

Grinder

btw

btw... my neighbor, Paul, was one of those "what the hell do i need a doctor for" guys. But though PC is a slow growing cancer it is silent and nearly imperceptible. He had no idea until it was way too late to treat successfully. I am thinking there is no neural transmission of pain inside the prostate, because when mine was swollen and infected, there was only the feeling of a hot ball affecting the surrounding tissue, and the pain in the infected urethra. There was no sensation of pain in the prostate itself. I could be wrong about that, it is what i experienced. But with no sensation of pain, cancer can spread and destroy the interior of the prostate and you would never know it is happening.

JayAur

Wow-This discussion took off

When I saw the original post I thought that only private discussion would be appropriate.

Boy...Was I wrong!

Perhaps the stars have aligned so that there could even be a Discussion Board “Cancer & Having a Sex Life”.  

Any type cancer...not just prostate...has an adverse, or challonging, effect on sexuality.  

Is it time for full and open discussion?  Apparently so.

Grinder

Start

Maybe just my opinion, but here's a good place to start...

If anyone is reading this, then you are alive and functioning, and we should be eternally grateful for that much, regardless of the circumstances we find ourselves. Many treatments were not available as recent as twenty years ago, and we are still alive perhaps to see more advancements in the future as well.

If I live my life preoccupied with disappointment and regret, what kind of QoL is that?

 "Not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content. I know both how to be abased, and I know how to abound: every where and in all things I am instructed both to be full and to be hungry, both to abound and to suffer need.

 But godliness with contentment is great gain. For we brought nothing into this world, and it is certain we can carry nothing out. And having food and raiment let us be therewith content."