Response (lack) to sexual stimuli post prostatectomy

phaedrus840
phaedrus840 Member Posts: 4
edited February 2018 in Prostate Cancer #1

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

 

 

 

«13

Comments

  • JayAur
    JayAur Member Posts: 33
    Sexual responses...lack thereof

    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
    MK1965 Member Posts: 230 Member
    Erections

    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
    VascodaGama Member Posts: 3,495 Member
    This is the taboo in prostatectomies

    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
    Clevelandguy Member Posts: 750 Member
    Need more time?

    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
    paulc59 Member Posts: 10
    phadreus

    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
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Mainstream responses

    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
    hewhositsoncushions Member Posts: 402 Member
    Hi all

    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
    Grinder Member Posts: 487 Member
    edited February 2018 #9
    My anecdote

    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
    Grinder Member Posts: 487 Member
    And

    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
    Old Salt Member Posts: 899 Member
    Good point

    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
    JayAur Member Posts: 33
    But.....

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

  • Clevelandguy
    Clevelandguy Member Posts: 750 Member
    Testosterone

    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
    hewhositsoncushions Member Posts: 402 Member
    edited February 2018 #14

    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)

  • Old Salt
    Old Salt Member Posts: 899 Member
    JayAur said:

    But.....

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

    It's more complicated than that

    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. 

  • Grinder
    Grinder Member Posts: 487 Member
    edited March 2018 #16
    Risk varies

    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
    VascodaGama Member Posts: 3,495 Member
    Jay; what's the question?

    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
    phaedrus840 Member Posts: 4
    Not lack of wanting it...

    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
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    May help

    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
    RobLee Member Posts: 269 Member
    edited March 2018 #20
    Lack of sexual interest

    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
    phaedrus840 Member Posts: 4
    edited March 2018 #21
    Trying to explain...

    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