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Response (lack) to sexual stimuli post prostatectomy

phaedrus840
Posts: 4
Joined: Feb 2018

Hi -

 

I'm new here, looking for some advice/help. Age 63, robotic assisted prostatectomy 4 months ago. Prior, no health problems, meds, etc.  Went well according to surgeon who has done over 2,000 of these. Last check psa was zero, to be checked again in a couple months.

 

Here's the deal. No erections since surgery, have been on a daily small (5mg) dose of Cialis. Not unexpected as surgeon said it could take a year for erections to come back. Without erection, it has been (very) difficult, but not impossible to stimulate myself to orgasm. This has happened rarely due to the difficulty. Recently, however, I'm not finding anything that is sexually stimulating that would allow me to reach that difficult to achieve orgasm. This was not a problem prior to surgery and recovery. Not being able to get an erection is depressing, but not finding anything sexually stimulating is uber depressing.

 

So... my questions

1.  is this part of the normal or usual healing process? Lack of sexual release causes muting of response to sexual stimulation?

2.  will this, like the ability to achieve erection, come back given more time? Thanks for any help.

 

Phaedrus

 

 

 

JayAur's picture
JayAur
Posts: 33
Joined: Aug 2017

i am 19 years post RP.  Your comments have a ring of reality for that entire period.  At the time mine was done there was no real advance discussion of how life changing the operation would be.   General words were used, but the actual experience was quite different for me.

Might be better discussion in private messages, if you like.  If not, know you are not the only one...but...be thankful for getting rid of the cancer for now.  

Life is worth living, and if you have an understanding partner...sex life (although different) can still exist.

Peace and best wishes.

MK1965
Posts: 178
Joined: Jun 2016

It is just hope that erection will come back one day. Small percentage of people have some kind of erectile function recovery but most not much if anything. It sure is depressing of having non existent orgasam and tension release But that is it. Might improve with time.

In my case, even almost 16 months post RP, nothing changed from day when woke up after surgery.

MK

VascodaGama's picture
VascodaGama
Posts: 3030
Joined: Nov 2010

We all RP survivors read and hear about the risks involved before the interventions but only understand when we feel or miss something. We agree and consent on the outcomes signing an agreement informing that we are aware of the facts and that we relieve the doctor from any responsibility or guilt on what he has not explained us in detail. This is the taboo in prostatectomies but Erection dysfunction and Libido less are experienced by all PCa survivors independently of the chosen treatment. ED is maybe more prevalent in RPs.

It took me about 4 months after RP before I started to miss sex. ED was there from the beginning but I followed the instructions given by the sexologist in the team of doctors caring my case. He gave a pump and requested me to masturbate constantly to avoid atrophy of the penis and to cause flow of blood into the cavernous area to oxygenate the tissues. Surely I had libido and later even with a shorter penis I had sex but not as it used to be before op. Much effort was necessary to get it done and that turned me off some times, becoming lesser and lesser as the years passed. What used to be a daily affair it become a seldom activity, and with it the loss of desire.

Probably the confusion after op has distracted your thoughts leading to libido less. As JayAur comments above, you are not the only one confronting the problem. Try keeping the activity alive to avoid further atrophy or a dead penis forever.

Best wishes for a continued good results regarding the cancer.

VG

 

Clevelandguy
Posts: 461
Joined: Jun 2015

Hi,

At 4 months I would think you would need more time to heal.  Keep up with the stimulations and give it more time.  Unless you were very damaged during your surgery it should start to come back in a few months. I was having ED improvement well into my second year.  Good luck.............

Dave 3+4

paulc59
Posts: 10
Joined: Dec 2017

i am on the same time line as yourself, 4 months out-and as of yet--NOTHING. I am on daily 20mg of sildenafil and i just got approval to up the dosage. I have not lost the desire or libido,trust me ,i was just in florida and girls in bikinis still aroused me and i never stopped looking so i took that as a positive.I have resorted to porn to get me to orgasism,and yes,i have somehow got there besides being placid.It was an added bonus as i thought i would not have that feeling again.It was not as intense but i will take it. At the 6month mark i might get a little more worried. My wife is going through her own womenly problems so the lack of sex hasnt been an issue of yet

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

phadreus,

Your first paragraph, summarized, says that while your surgeon told you you may not be potent for a year, you are not potent at four months, and wonder what gives.  What gives (most likely) is that you have several more months of impotency.  But the undetectable PSA is great.

I started having sex after DaVinci at around 3 months, but only with the assistance of Trimix, an injection.  I neither recommend or recommend against Trimix, it is just a decision you would need to make yourself.

Annswer to your specific questions:

1. Yes

2. Yes, potency for most men who were potent before RP, and who did not have to have their erectile nevrves cut out, regain potency at some point.  This was not true decades ago before nerve-sparring became common or the norm.  This will commonly take a year or more to occur, which most likely is what your surgeon told you beforehand.

A few relevant and common-sense observations: 

As men age, ED occures naturally.  Throw in radical surgery in the UT and pelvic region, and ED is intensified.  I cannot but wonder at men here who are over 70 who blame ED for impotence; they most likely would have been impotent regardless.  But I know that you are younger, closer to my age (I was 58 at RP).  Your Cialias dose is low, you might ask for a boost.  But taking it daily is very important. My surgeon said that initially its purpose is NOT to give an erection, becasue it will not do so. Its purpose currently is to stimulate blood flow and prevent vascular atrophy in the penis. Most likely, it is doing this, although such increase in blood flow will not be detectable to you consciously.

I could "do it" without Trimix (but with Cialias) first at around 9 months; I do not recall exactly now, three years later, and did not "keep notes."  If someone looks at my old posts and says that I wrote then "it took 11 months", or "7 months," so what; they are more interested in my sexual history than I am.  It was around 9 months.

Today, at three years, everything is spontaneous, and I have no need of Cialias.   Just my personal story, ancedotal. Just as anyone who never achieves potency again has a story that is ancedotal -- their personal path.   

Which story is more common ?  If you ask here, men will claim that their view is the norm.  If you were to factor out men who were impotent prior to surgery, or who had complications during surgery, or who had surgery so long ago that erectile nerve sparing was uncommon, the results will be worse.  Some will quote older books or studies that were written with an overt, explicit anti-RP bias.  Read knowing what the purpose of the reports are.

Regardless, you are not interested in statistical analysis, you are interested in recovering potency.  Very likely, given your specifics, that will happen. No one here can claim more or less at four months for your particulars.  I hope that in a year your feelings are very different, for good reason.  But tomorrow and next month, what you are currently experiencing you will still report then,

max

 

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Hi all

Been away for a while with work keeping me busy but my six month PCA test results due Thursday brought me back for a chat.

Good timing as ED is something affecting me at the moment.

I am lucky in that with Sildenafil and a pump I can get something (usually funny shaped) going BUT full sex is impossible as yet and orgasms are a bit rubbish. Please note the use of the word as yet. I have decided to use that phrase come what may.

Last week I got my pre-PSA test blues and felt like chucking the towel in on everything. I always do at this point, convinced I am going to break the 0.05 mark and be really f****d.

This week, I repeatedly hit myself (metaphorically) over the head, nutted up and got on with it.

Ignoring last week's blip, I've been throwing myself at my health again after a post-remission lapse and have been again losing weight and (in some lifts) lifting better than I was when I was in my mid 20s. It feels good to have something in your control.

I had a moment of clarity about a month ago clawing my way out of the lapse when I was struggling to diet, lift, force myself to meditate, write my thesis and do tons of lifestyle changes whilst being mad busy at work. ED on top of this was the straw that broke the camel's back.

I stepped back and realised some things that I should have faced a long time ago. I cannot do everything I want at once and what I do want to get will take time. I need to be clear on my goals.

So I decided to put all my effort into two basics - diet / lifting and penile rehabilitation with AND THIS IS VERY IMPORTANT, no expectation other than to turn up and pay my dues.

What I realised was that I had a huge amount of negative self talk going on and I reckon (thinking back to previous bouts of ED) a significant proportion of what was going on was in my head.

Trying to "have sex" (as opposed to rehabilitating) whilst recovering from treatment is like trying to rebuild a car whilst driving it down the road - difficult, dangerous, messy, potentially quite fun but always with the risk of a crash. So I have put myself into maintenance mode - work the problem, keep hacking away, one day at a time, one foot in front of the other, accepting the end game is a ways away but being willing to put in the hours to get somewhere.

I also put things into perspective by saying "well, I got through months of fear, two crappy biopsies, a five hour operation and two weeks as a drug filled walking pee bag transporter." I reckon I am up for the challenge of getting there. I don't know where "there" is but it will be better than here.

I guess what I am saying is I can talk myself up or talk myself down, regardless of my physical condition. The thing that will me forward is not my condition but what I do with it.

Just thought that mindset view may be of use to someone.

Cheers

C

Grinder
Posts: 441
Joined: Mar 2017

If it's any help, my surgery was wildly successful. But I was warned to use the pump to oxygenate. I did so for about the first 6 to 8 months until stimulation made it just as large as the pump, then did not need it anymore. After about a year passed, it was nearing normal erection, and now it is rock hard like old times, just really shorter. But I have been keeping it primed once or twice a week so I don't lose it.

But, I should mention my Gleason score was 6 3+3, so I did not suffer any extra cutting as the PC was entirely contained. Although I remember the same fear and trepidation the first few months, when we all wonder if we will ever be continent again. A friend of mine was not so lucky as his surgery was some nine years ago, and he has the AUS installed. I never ask him about it, I am just grateful I waited long enough with my prostate issues until the technology improved. And who knows what improvements may be coming.I

But that is a fearful time, the first four months. At least you can hear cases like mine to give you some hope of complete recovery.

Although there are still drawbacks... Besides the loss of a couple inches in length, I HAVE to empty my bladder before any  stimulation,  otherwise I will urinate all over when having an erection. There are two sphincters controlling the bladder, you lose the one that closes off the bladder during sex. 

IMHO if you regain continence, that is the major battle, judging from my friends AUS experience. If you recover from ED, that is a bonus. He never complains about the AUS... But he has had serious heart issues and operation too, so that puts his AUS issues into perspective. He's just glad to be alive.

Grinder
Posts: 441
Joined: Mar 2017

I am guessing the lack of interest might be low testosterone levels. The testicles and the adrenal glands produce the hormone, so something would have to affect them to interfere with production of hormone... like age, which affects many gland and organ functions, and diabetes, which affects circulation of oxygen to glands and organs.

Don't be afraid to "fly solo" if your spouse can't keep up with twice a week actvity. We also have a hormone produced by the pituitary called prolactin that shuts down our sex drive. It's the same hormone that causes lactation in women. Overactive prolactin in men can cause loss of libido, especially if prolactin is being produced, but testosterone is being inhibited by age or diabetes.

"Hyperprolactinemia is a rare cause of erectile dysfunction. Men with erectile dysfunction who are found to have a low testosterone level should have a measurement of their prolactin level. Treatment consists of lowering the prolactin level by medication or surgery, or both".

Guys who can "do it all night" likely have low prolactin levels, as it is produced especially after sex to shut down sexual desire. Don't know why, it is what it is.

Old Salt
Posts: 720
Joined: Aug 2014

Grinder makes the point that a low level of testosterone may contribute to a lack of interest. Do ask for a testosterone test and go from there. 

JayAur's picture
JayAur
Posts: 33
Joined: Aug 2017

With prostate cancer they want to DEPRIVE me of testosterone.  Absolutely refused to even consider giving it To me!  How does one overcome that?

Old Salt
Posts: 720
Joined: Aug 2014

Testosterone replacement therapy (TRT) after prostate cancer therapy is being used/advocated by some highly credentialed MDs. But I only suggested that Phaedrus gets a testosterone test; nothing more than that. If it is low for his age, options can be considered. 

Clevelandguy
Posts: 461
Joined: Jun 2015

Hi Jay,

Testosterone from what I have read is the fuel for Pca.  I have wondered about taking that as we all get older but I am afraid as it might re-waken my Pca.  I think I will choose to get old and wrinkly without any Testosterone suppliments. You can still workout and gain some muscle mass back with weights and protein shakes. 

Dave 3+4

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Re testosterone as with TRT it is controversial.

There are two models - the saturation model and ... the other one :)

One assumes any test will kick off the PCA and the other assumes even a minute amount is needed so you might as well go on a cycle.

I'd rather be conservative myself (especially given my potential BCR)

Grinder
Posts: 441
Joined: Mar 2017

I personally would not take supplements myself. I am suggesting Phaedrus has low testosterone resulting in lack of libido, how that is solved is another matter entitely.

But I am mystified by the role prolactin plays in our sexuality. Over-production of prolactin is rare, but if your T-levels are low anyway, any prolactin production is problematic.

And if it was a successful prostatectomy, and there was no metastasis, then testosterone isn't going to "create" a bandit prostate cell. It will stimulate an already existing prostate cell if one or more escaped.

If it was me, and I was dealing with loss of libido, I would do what I can to stimulate natural production of testosterone, assuming I was not overly concerned about rogue prostate cell bandits that escaped. And there is some question whether patients without metastasis that had successful prostatectomy ever have to worry about the effects of testosterone:

"I’d like to make a few final points to give some perspective on this story. First, it has become obvious that raising testosterone levels in a man with a history of prostate cancer is not like pouring gasoline on a fire. In fact, with the important exception of men who have undergone hormonal treatment to bring down their T levels to castrate levels, the limited evidence suggests that raising T levels does very little to the growth of prostate cancer." 

https://www.harvardprostateknowledge.org/testosterone-supplementation-after-prostate-cancer

I guess the  alternatives and risks to be weighed here are:

- The risk of testosterone production stimulating a bandit prostate cell

- The loss of libido and lack of interest in sexual activity

- The use of testosterone replacement to increase interest in sex

- Addressing low T-levels naturally and just living with the results

I guess we each have to weigh these alternatives and the risks, and decide what is best for each peculiar case. I myself am not suffering from poor circulation yet due to diabetes or  aging or other, and do what I can to keep circulation and organ function working so testosterone is produced naturally, not worrying about bandit prostate cells.  But others may be at higher risk for bandit cells, and cannot take the risk I am taking. Also I don't intend to take testosterone replacement. If it comes to that, I will probably just take the hit on my libido... But for now I don't have to worry about that yet at age 64.

VascodaGama's picture
VascodaGama
Posts: 3030
Joined: Nov 2010

Jay,

What's your inquire in above post?

The hormonal treatment does not just over see the Testosterone affair. ADT got several means to deprive the bandit from having access to androgens/testosterone. One is the castration affair done with orchiectomy (permanent) or using an agonist like Lupron (chemical). Other procedures involve the use of drugs that do not interfere with the natural testosterone in circulation but prevents this from being absorbed by the cancer. One way is done with antiandrogens like Casodex that "fakes" the testosterone biostructure jamming the androgen receptors of the cells. Still another way is by restricting the manufacture of testosterone from cholesterol using inhibitors like Zytiga. Still another one is to avoid the manufacturing of the refined dihydrotestosterone (tenfold more potent than the natural testosterone) with 5-ARI drugs like Avodart, etc.
Dihydrotestosterone is the "super-fuel" most procured by the bandit.

Guys with low testosterone in circulation can opt for estrogen patches as a substitute of TRT. In any case one should also check the volume of estrogens in circulation as these could be the cause behind the lack of testosterone.

Best,

VG     

phaedrus840
Posts: 4
Joined: Feb 2018

Grinder -

 

The thing is, it's not a loss of libido – defined as a desire for sexual activity. Believe me, after 4 months, the desire is there. My problem, or what I am trying to understand, is a loss of the ability to become aroused by sexual material. I don't think arousal and libido are the same thing (and my libido and testosterone levels were fine prior to all this). I understand that I am not likely to achieve erection for some more time, but I don't believe that sexual arousal only means having an erection. However, maybe I am wrong, and my current inability to achieve erection (the wiring has not yet hooked up) means that sexual material no longer arouses (as any arousal cannot result in erection). I just find all this as quite odd, and interesting, and wonder if any others found this disconnect after RP (and it seems others have).

 

 

Phaedrus

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

Phaedrus,

Male sexuality consists of three things, independent but related:  Erection, orgasm, and ejaculation.

Orgasm may occur without any erection at all, such as sometimes occures with many men (usually younger) during sleep (this can also have an accompanying erection for some).  Many men here have written about erectionless orgasms.

Erection requires (normally) both neurological and vascular reactions, although dialator drugs like Trimix bypass the neurological circuitry, and just cause erection based upon vascual dialation (Trimix is reportedly effective in providing erections in around 90% of all men with severe ED).

Ejaculation is normally an accompanyment of orgasam, but men post Rp will never again have ejaculation in the conventional sense (the plumbing is all removed) -- both the "tubing" and the spasmotic muscle effect provided by the gland itself is gone.

I do not pretend to know exactly how this might answer some of your concerns at present.  But I do  recall that I had a sense of "stimulation" during total ED, which generated no response "down below" at all; it was as if it were totally and completely dead.   So, I do not think your current situation is unusual or cause for long-term alarm

max

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

I've read the entire thread and I'm still trying to understand just what the OP (Phaedrus) is having a problem with...

The thing is, it's not a loss of libido – defined as a desire for sexual activity. Believe me, after 4 months, the desire is there. My problem, or what I am trying to understand, is a loss of the ability to become aroused by sexual material. I don't think arousal and libido are the same thing...

My question is, do you find porn and/or the thought of sex interesting or is it not interesting?  When you view porn, does it make you want to keep looking at more, or do you lose interest after just a few minutes?  Or have you convinced yourself that you are not the man you once were and essentially talk yourself out of it?

I can identify with practically everything that Vasco, Max and Grinder (and you other guys) have contributed, as I've had just about everything.... a unilateral orchiectomy (right testicle removed), prostatectomy in which the surgeon confided that he "had to remove a lot of tissue", Kegel training with a Hot physical therapist, artificial urinary sphincter implant (AUS), adjuvant radiation and over a year (so far) of hormone deprivation therapy.

That last one, the Leuprolide, has by far had the greatest impact upon libido... FAR more than anything else.  Oddly, no one ever considered checking my testosterone level. Nor was I offered Cialis to "increase circulation".  But up until a coupe weeks after the Lupron injection, I never lost my obsession with sex.  Even though I had problems maintaining an erection starting around age 50,  I was always eager to engage in just about anything to relieve my constant sexual need.  Even after the orchiectomy, thru he period of biopsies, and after the prostatectomy I was preoccupied with just about anything female in nature.

I waited four weeks after the RP before becoming active, lest I break something inside. And throughout the following months when I was more concerned about incontinence than about erectile function, I was able to experience the dry pelvic orgasm others have mentioned. Even the first ten days after the start of ADT I experienced practically non-stop hightened arousal (during what is known as the "Lupron flare").

And then my interest dropped to zero. So I can sympathize somewhat with what Phaedrus feels he is "missing".  But believe me, until you've experienced what it is like to have near zero testosterone, you don't know what "lack of interest" means.  Occasionally I may look at my sexually oriented social media page, which was once very active and one of the more popular pages on that platform, and I now wonder what the heck I had found so fascinating about it.  I still appreciate seeing a beautiful woman, but have no idea what the heck I might possibly do with one (well, I do still love my wife very much).  In fact, it's hard to find anything interestng these days. Everything has become a chore, including looking at porn... something to do "if I have to" and get past it so I can take a nap.

So tell me Phaedrus, is THAT what you mean by your "lack of desire?"  I am not trying to in any way minimize or delegitimize your feelings, but just wanted to give you something to compare your dilemma to.  I suspect that once you get past the worry, you'll be just fine.

 

 

 

phaedrus840
Posts: 4
Joined: Feb 2018

RobLee -

<<  My question is, do you find porn and/or the thought of sex interesting or is it not interesting? 

I find such sexual stimuli interesting, but not stimulating, as it was prior to RP.  Prior to my RP it wouldn't take much in the way of stimuli to create desire.  Now, for me anyway, virtually any stimuli does not create desire.  I could look at porn/naked ladies all day and not feel that old desire to pollinate.  That is what I find weird, and interesting in an academic sense.  I think desire - the response to sexual stimuli - is innate/automatic.  Why would the inability to achieve erection eliminate (or seriously dampen) the innate response to sexual stimuli?  This is why I asked the question, wondering if this has happened to others that had RP.  If not, then this, perhaps, is just my own psychological problem,, or perhaps the inevitable slow down that comes with age is overlapping with my recovery from RP. 

I'm not suffering in any real sense, just curious.

Phaedrus

 

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

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
Posts: 461
Joined: Jun 2015

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
Posts: 178
Joined: Jun 2016

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

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

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
Posts: 461
Joined: Jun 2015

"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
Posts: 178
Joined: Jun 2016

Thanks Clevelandguy!

i need psychiatrist as much as you need gynecologist.

MK

hewhositsoncushions
Posts: 279
Joined: Mar 2017

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
Posts: 461
Joined: Jun 2015

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
Posts: 441
Joined: Mar 2017

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. B) 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.

 

Grinder
Posts: 441
Joined: Mar 2017

"kegel training with a HOT physical therapist"

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

just kidding... i think.

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

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.

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VascodaGama
Posts: 3030
Joined: Nov 2010

Grinder,

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

Best,

VG 

MK1965
Posts: 178
Joined: Jun 2016

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

 

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RobLee
Posts: 259
Joined: Feb 2017

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
Posts: 461
Joined: Jun 2015

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

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RobLee
Posts: 259
Joined: Feb 2017

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
Posts: 441
Joined: Mar 2017

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
Posts: 441
Joined: Mar 2017

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's picture
JayAur
Posts: 33
Joined: Aug 2017

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
Posts: 441
Joined: Mar 2017

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."

Grinder
Posts: 441
Joined: Mar 2017

I moved this to a new thread so as not to change the subject.

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