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What next?????

MK1965
Posts: 178
Joined: Jun 2016

Would like to hear comments, suggestions, advices, could do, should do things?

I was not fortunate enough in my recovery after RP. At almost 21 months post RP, I still did not experience any sign of spontaneous response from my penis. Still using Cialis, Viagra, VED and BIMIX, normally not at the same time. BIMIX is also loosing its effectiveness and not producing erection sufficient for sex.

Would like to hear from those with late recovery? Did you give up trying after certain time post RP or you continged into year 3, or you just were at “Whatever happens....”?

Some days, I am to the point where I want to stop everything and give up. Other times thinking, I can not give up my sex life. I’m 53, still in excellent shape, very active, healthy.

Hamlets dilemma.........?

MK

hewhositsoncushions
Posts: 279
Joined: Mar 2017

I'm going to throw these thoughts into the ring.

Every time I get depressed about my situation, my own ED (I can get a semi-boner but can't deploy it), my mental health, the fuckups I have made, blah blah, I look to others in a far worse situation for inspiration:

  • Todd Love - http://www.dailymail.co.uk/news/article-2195897/Triple-amputee-veteran-completes-grueling-10-5-mile-endurance-race-called-The-Beast-hours-honor-fallen-U-S-soldiers.html
  • Garrett Matthias - https://www.legacy.com/obituaries/desmoinesregister/obituary.aspx?n=garrett-michael-matthias&pid=189523034
  • Nick_Vujicic - https://en.wikipedia.org/wiki/Nick_Vujicic

And I say **** it - they have / had it a **** ton worse and didn't just make lemonade, they stole a truck, raided the lemonade warehouse and partied with what they drove off with.

I got so hung up on sex regardless of PCA because reasons but struggling with what I can't do and have made me reflect very hard on what I CAN do and what I DO have - basic health, family, friends, a (crap) job but it pays and things I am turning into a vocation.

I have destructive thought processes that probably need a crowbar to shift out but I work on this approach to fight them:

Step 1: Get up

Step 2: Be thankful for and enjoy what you do have

Step 3: Work the problem like today is the first day you have encountered it and be realistic

Step 4: Make the day a bit better for yourself and someone else

Step 5: Be thankful for what you achieved

Step 6: Go to bed

Step 7: Rinse and repeat and NEVER GIVE UP

Stoicism teaches us to despise what we cannot have. Most of us (me included) are not that philosopically advanced, but what we can do is focus on what we do have and what we can offer.

If we can't Carpe Erectum we can damn well Carpe Diem

C

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3311
Joined: May 2012

I'm sorry you're still having a range of issues, hewho.

I don't recall your age, and did not take the time to backtrack and look at it, but a point I make at times is that most men over 60 are beginning to have ED issues,  even without prostate diseases.  Throw in some cancer, surgery, and perhaps radiation, and it is little wonder that ED becomes a common occurence.

Philosophy usually works for its students, until they actually need it to do so.  The great philosophers of history have been among the most messed up, disturbed humans to walk the planet. Not all, but their insights often did not help them individually.  Kierkeggard ?  Profoundly neurotic.  Nietzsche ?  Went totally psychotic well before death, believed by most historians to have been induced by syphilis in his brain.  The list is long and sordid.

You describe people enduring the unbelievable. Watch this recent hit from a few years back. It might help.

The only way I know to get the links I post to open is to first highlight the link, then RIGHT CLICK, and click "Go to....."    I hope the song is helpful,

max

https://www.youtube.com/watch?v=1u-niluB8HI

 

Another. This is a country song about 'can-do' and endurance. Ironically, the singer died of an alcohol ovordose in the 1980s, at the age of 34...  The lyrics are striking.

https://www.youtube.com/watch?v=UlF2p1UPt8Y

MK1965
Posts: 178
Joined: Jun 2016

max,

At time and diagnosis of prostate cancer, I was 51 y/o. 

Now, I am 53. I was at younger side of prostate cancer survivorS. Had bilateral nerve sparing surgery and was expected to recover sexual function because I went into surgery with very good erections, because of my age and health status. Also, I am non smoker, non drinker, healthy, exceraising regularly, not overweight, and never used any erectile meds like Cialis or Viagra before.

And all these predictors of sexual func recovery did not work in my favor.

MK

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3311
Joined: May 2012

Mk,

I recall the details of your experience, Mk. And I'm sorry about the ED now, as I was when you first began reporting it.

"Likely outcomes" and "averages" are just that:  averages. What happens to any individual guy cannot be known in advance.  I had a cousin-in-law diagnosed at 43, about 8 years ago (around the year 2010).  Began treatment at MD Anderson, Houston, perhaps the best facility in the world.  Began treatments with IGRT, plus HT. No surgery. He was dead in under two years.  He failed to qualify as "average" in response also.  26,000 men DIE of PCa in the US annually.  They don't make the average/predictive range either. 

My perspective is to follow hewho's item #2 above:  Be thankful for and enjoy what you do have.

We all play our cards and pray for the best.   Wishing you health and well-being,

max

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

Ditto MK to Max's sentiments expressed above. I remember everything you've told me and I often think of your experience every time I read a similar case or see your nickname in a forum. Others like myself went into this hoping we would be among the 99.9% for whom everything went as planned. When you are among the 0.1% then the stats are of little comfort. It is natural to feel that you've been cheated. It takes a while to lift the rug off the floor and shake it out, realize that it won't be looking any better after a few more years of beating it and just try to move on. It's called acceptance and is a natural part of the grieving process. 

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

Might I suggest you consult with your M.D. and consider Muse or Caverject Impulse.  The Muse is a small suppository that is self placed in the penis When you want an erection.  Gave me a 75% erection.  Caverject is same drug that you self inject (yep, a needle ) into the side of the penis.  Same drug as Muse.  Via injection gave me full erection.

Just my experience.  Best to you.  There are other satisfactory sexual activities.  Some studies indicate that we guys think intercourse is what it is all about.  Many females would disagree.  Find what works for you and your wife/partner.  

MK1965
Posts: 178
Joined: Jun 2016

Jay,

Already, used all non invasive and less invasive options:used and still using Cialis and Viagra without any response, VED and constricting rings never produced usable erection for penetration, used TRIMIX and had some success with TRIMIX but  erections were very painful and hours after erections would go down, peniswould be aching. Switched to BIMIX but BIMIX gives me some fullness and partial erection which most of the time is not usable for sex.

Wha else could I do? Implant?????

At 53, I can not say good buy to sex. I am not ready for that.

i am grateful, I am cancer free but I could be cancer free also without this bad SE if I would not listen  to my wife.

MK

jeffman
Posts: 26
Joined: Oct 2017

I am 10 months removed from removal. ED has been accepted by my wife and myself,but this in no way means sexual pleasure is dead along with erections. I can still have the same intensity orgasm as before , sans ejaculation, but I need to try not to drink anything before sex or leakage (of another sort) can occur. We have accepted this and have learned new ways to satisfaction- for both of us. Almost like being 16 again.

All is not lost. Things just get different. And I'm alive.

MK1965
Posts: 178
Joined: Jun 2016

I am glad it works for you.

In my case, all fun is gone out of my life, nothing is happening neither bad nor good.

No excitement of any kind....

 

MK

Clevelandguy
Posts: 462
Joined: Jun 2015

I think you hit the nail on the head jeffman, you realized you had a problem and found a work around for it.  For any obstical in life you need to find something to get you past your problem.  If you don't you will not progress and you will iive with your problem until you can "fix" it, whatever the fix is.

Dave 3+4

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

MK, this site is populated by people who have been where you seem to be.  Worried, perhaps depressed...just know that we have all been there.

Life can sure hand us lemons.  But we can, if we care to, overcome by accepting what we can’t change and moving on by changing our outlook.  Please join us in accepting the situation and moving on.  Life is funny that way...we just need to make the best of it.

Peace, and hopefully better days do lie ahead.

Old Salt
Posts: 720
Joined: Aug 2014

Depressed

Lemons

Accept

Change

are some of the key words that I picked up from the above post. 

Now, let's focus on 'change'; what about redirecting your attention to the rest of the world? So many activities beckon for your help. So many possibilities to volunteer, and make the world a better place. And BTW, many of these can be (quite) gratifying.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Good advise from old salt ,jar aur, and others.

To add there are urologists that specialize in improving physical ability for erectile function that you can consult with, that may be of help....anyway worth  try.

Also you can speak with a phychologist that specializes in in providing strategies for coping with erectile dysfunction...they can speak with couple.

 

Grinder
Posts: 441
Joined: Mar 2017

This may seem a bit off topic... not really.

This is a quote from a sitcom about mothers who use guilt to obligate their family members...

 "That guilt-mobile my mother drives has a LOT of miles on it... but it runs like brand new!"

 That described my mother too. But she was emotionally unstable most of the time because you CANNOT guilt people into loving you. In fact you drive them away emotionally.

That's a good reason Christianity pushes forgiveness so much. My poor mom did not understand that, but I learned from her how destructive playing on guilt can be in relationships.

Taking what the Bible says about forgiveness to heart, I have learned not to keep a record of wrongs in my relationships, and in fact, every person I know gets a "do-over" ALL the time. 

As a result, my relationship with my wife is a firm, loving, committed bond that we are certain will last till death, and maybe even beyond. We have not been sexually active for years when my prostate infection flared up... but we dont need it. Our relationship is deep enough that sexual activity is incidental. She's still loves to cuddle, to show displays of affection etc. But the act of sex is way down the list... so we did not miss it.

So I highly recommend a constant state of forgiveness for all you guys and your relationships... 

 4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking,it is not easily angered, it keeps no record of wrongs... 1 Corinthians 13

"It keeps no record of wrongs"... These verses are not just words on a page... they are quite true, I have discovered from experience. All my relationships are great, with my kids, with their spouses, with most of my friends... at least the ones who are also capable of grasping this important principle.

The friends who are not capable of this... well, I guess they're mad at me about something that happened somewhere sometime and I can't do anything about that. It's a shame because relationships are amazing once you've learned how to forgive as a reflex.

MK1965
Posts: 178
Joined: Jun 2016

Grinder,

Why and whom I need to forgive?

i did not push my wife into surgery, she did it to me.

i could not do that to my worst enemy.

I like your 1 Corinthians 13. 

Love has bridges that sometimes get burned. To build new bridge at the same place, it takes time and effort and good will.

I am ready to build new bridge but far away from burned one.

MK

Clevelandguy
Posts: 462
Joined: Jun 2015

Hi All,

Before I had my surgery my wife & I sat down and reviewed the options of surgery vs radiation.  We both thought surgery was the best bet to get rid of the cancer.  If my surgery went bad I would not have blamed my wife in the least amount.  Sometimes in life things just don't work out as they were suppose to so you have to make the best of what you have.  Yeah I leak a little from time to time, I'm not happy with that but I have learned to adapt with liner pads.  Sex is different now with my wife but we both learned to adapt.  Sometimes when life throws you a curve ball strike you need to say batter up again and hope for a 2 base hit or a homer.  Gotta keep on looking positive, none of us wanted this cancer but were all alive with different side effects.  Need to put it behind you and move on to what the future holds.  Where would we all be if Thomas Edison quit with the light bulb after his 30th failure.

"Our greatest glory is not in never falling but in rising every time we fall."   ~ Confucius

Dave 3+4

MK1965
Posts: 178
Joined: Jun 2016

Thomas Edison was not inventor of lightbulb.

He stole it !

MK

Clevelandguy
Posts: 462
Joined: Jun 2015

I see you missed the true meaning of my message.

Dave 3+4

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

MK, do you remember the 5 Stages of Grief?

Denial - Anger - Bargaining - Depression - Acceptance 

You MUST work your way to reach ACCEPTANCE.  We, who are here, have all wrestled with the grief monster.  You have to realize that you must somehow, someway, someday reach the goal, ACCEPTANCE!

We people here will stay with you until you reach the goal.

Keep at it!

MK1965
Posts: 178
Joined: Jun 2016

Jay,

nicely said.

Problem is that I can not accept the state in which I am now at 21 month post RP as my new normal.

I can not say good bay to my sex life at the age of 53. Sex For me is sex only with hard on and penetration. Solution must be in something, somewhere etc.

i will keep looking until I find it. Maybe, I will find it soon, maybe in near future or maybe never.

What else I have to loose? I-lost my functionality, QoL, lost support of my wife, marriage is in very grey area and that is just a few to mention.

And all of these happen because of RP.

i wish I never saw any urologist in my life. I wish I never new about diagnosis so I would live happy regardless of whatever was going on in my body.

MK

lighterwood67's picture
lighterwood67
Posts: 211
Joined: Feb 2018

What solutions to your issues are acceptable to you?  In reading your posts, in my opinion, there appear to be many issues.  Personally, I do not think the solutions are on this site.  You are the man in the arena now, I ceratinly hope that you look deep into yourself and ask the question, is this the place I want to be a year from now?  You need to stand up and fight.  Make this situation better for you and all who love you.  Peace to you my friend.  Even though I do not know you and you do not know me,  I surely hope the best for you.

Grinder
Posts: 441
Joined: Mar 2017

MK

I guess I'm missing something here.

She "pushed" you into "nerve sparing" surgery?

However, it is clear nerves were not spared. Since this was a routine prostatectomy, there should have been excellent nerve sparing, but there was not. Why not?

Are you saying she conspired with the urologist to damage or sever the nerve bundles?

We don't know who you are, MK, and you dont know who we are, so we all can be assured of anonymity if you want to admit your suspicions.

Regardless, there are two alternatives to play out here...

1) She loves you and was concernced about your health, so she pushed you into (what she thought was) nerve sparing surgery so you could get your prostate out before it became a life threatening situation. If that is true you need to forgive her the mistake and beg her forgiveness because a !oving relationship is hard to find in this world. You can't build bridges with many of the self centered egotistical people of our presently hedonistic culture.

2) She had ulterior motives pushing you into surgery. If that is true, you are better off finding this out now, and you are lucky worse did not happen... I know a guy who was slowly being poisoned by his wife while she was having an affair with another man. It looks like her intent was to off him, get insurance money, marry the other guy... and no one would be the wiser. They divorced, and she married the other guy... what a******** the other guy must have been. He remarried and it took a while for the poison to dissipate from his body. He couldn't prove it, but the doctor he saw while he was sick first alerted him to it.

BUT if it is in reality #1 but you just think it is #2, you better get your  head straight and seek spiritual counseling or therapy, or you may destroy the best thing you have going for you. And you better get right with God if that is the case because you are making way too big a deal about ED.

I say this knowing that, in the instance of my friend, crazier things have happened. So #2 is a possibility, but you better make 100% sure before you lose what tyo have left.

But then again I may be all wrong about this too.

 

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

MK. Check your CSN eMail.  Sometimes people send information by that means.  I note that several members have been trying to find a way to offer you assistance.

Support of spouse might be one of the prime areas for concentration.  Several ‘caregivers’ frequent these boards and the chat room.  Any chance of talking to her about joining?

Here is a link that might give you a start in finding more info. https://www.healthline.com/health/tips-sexually-frustrated-couples

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

Sorry, duplicate post

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

I hope that you and wife have not given up on solving the frustration of dealing with your after effects.

Keep in touch with the people here if you are still stressed out.

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