Impatience after prostatectomy

I had my prostate removed back in June of '13 and there was nerve damage resulting in a partial removal of each nerve.  The catheter was in for eight days afterward.  Regaining the bladder control has been slow enough, but to make matters worse, on the 28th of August, I went into the hospital with Guillian-Barre' Syndrome which is the result of the immune system getting confused and attacking the nervous system.  I consider myself lucky compared to the stories I have heard, but it was 17 miserable days in the hospital learning how to walk and feed myself, again.  I ended up with an insignificant amount of permanent nerve damage, but I don't think I am just being negative in believing it set me back to zero with my prostatectomy recovery.  I have used the pump and viagra, but the results are very, very disappointing for my wife.  The doctor tells me to be patient and it is too early for the bladder control sling, or for the erection injection (excuse the rhyme).  To be honest, I am not crazy about anymore pills, surgeries, etc., because I am trying to be patient per the doctor's advice.  However, the lack of a normal sex life is so incredibly frustrating for my wife, it creates so much tension at home and the arguments just make me want to shut down and get some space.  I would love to read any responses containing advice, support, or just anything to help me figure out how to deal with this.  I am trying to be "STUBBORN" by being patient and listening to my doctor.  However, my wife thinks I am being stubborn by not wanting much faster results.        

Bronson,
I was so shocked by your post that I read it to my wife to get a female's point of view. She told me to tell you, "Ask your wife how she would feel if you were upset if she had both breasts removed after being diagnosed with breast cancer? Would she be hurt because you were upset because your sex life was not normal any more?" Would she be upset because you were "stubborn" and wanted her to have reconstructive breast surgery for "faster results".

I know my wife has been a saint with me the last 2 years and always allows me the time it takes to heal. Having just had artificial sphincter surgery a month ago, she has tolerated my leaking on me and on her without a blink of the eye all these 22 months. She has supported all my decisions without a selfish thought.

Listen to your doctor. "To thine own self be true"

Bill from Florida

I have to agree with Big Mac.  I don't know your age...maybe you're a younger guy, but speaking as a guy who had surgery in his mid 60's and who has been sexually "out of the game" now for three and a half years, I can only say that I thank God for my loving wife of 43 years who is completely, one hundred percent understanding and who has never, never, ever complained about the major change in our sex life. 

I think it has something to do with the "in sickness and in health" vow that we exchanged all those years ago.

In fact, I'm having an increasingly difficult time dealing with HealingWell because of the preoccupation here with ED issues.  I can't deny the magic of a healthy sex life, but there's so much more to life.  I just hate to see guys beating themselves up because they can no longer get an erection.  And I especially hate to see a guy being looked down on for being impotent after major cancer surgery.  Yeah, it sucks, but it's not the end of the world.

Hey, I miss the ability to get an erection as I could so easily do right until the day of surgery.  But, you know what?  I had cancer, and cancer exacts a toll.  As Big Mac pointed out, for women it can be terribly disfiguring on the outside.  For us, the disfigurement is generally on the inside, but it's no less real. 

At some point in our married lives, just about all of us will have to deal with the end of intimacy.  Maybe a spouse will have a stroke.  Maybe a serious car accident.  Maybe something else.  It's inevitable.  It's painful.  It's not the future we hoped for, but that's how it goes.  We can't just give up on one another or stop loving one another simply because the sex stops. 

I hope your wife comes to understand the seriousness of what you've been through.  You didn't choose it, you'd like things to be different, but this is serious business.  This is life and death.  She's lucky you're alive and functioning at all.  Hang in there.  Stay strong. 

 

Clock,

That is one of the best posts I've read on HW. I could not have written it better. Davidg, my wife told me pretty much the same thing. She's glad we can still enjoy time together.

My wife is my soul mate. We've been married 35 years. I thank God for her and pray for her every day. We please each other and there is so much more to physical sex than a stiff member and penetration. I enjoy a strong hug and a sincere kiss so much more now that I've done battle with the Beast and I can still stand on 2 legs.

One thing we will all agree upon: PCa sucks and ED is not the only downside of this disease.

Love will find a way. We all adjust to new norms.

I can't wish away my cancer and I have to deal with it.

I agree with what the others have said. It is interesting my priorities when I was diagnosed with cancer was 1. get the cancer out 2. take care of the continence issues and 3. work on the ED. When any of the three goes away, I tend to focus on the others. Point is taking care of the cancer was always #1 priority for me. You may want to try franktalk.org. That site is a support group dealing with ED and other issues and may provide you some help. Hope you and your spouse work through this. You've been through a lot and it sounds like you are on your road to recovery.

Bronson,

Bill & clock have sage advise. I am less than 2 weeks post surgery.

Just this last Thursday,my wife of 34 yrs and I were discussing what life has given us. Over the years I have had a stronger drive than my wife. Brain says I am still 21 but the body say "Hey Buddy, Your 55". Was able to get hard "enough" for sex but nor ridged with out drugs and ridged with Viagra.

My wife's body has decided that it is a good time to start Menopause so she has been less interested in sex since her last cycle in December. She has been to every Uro appointment with me and knows that "OUR" rehab will require her participation . As Uro stated "You use it or Lose it". No more than a six month vacation to wake up the sleeping penis .

Our Pre surgery discussions were about getting rid of cancer, not over doing it (Resting). I am not good at Resting. I did my duty and walked a lot and lost 15 lbs prior to surgery. Now down 20 lbs. My wife told me that she was not ready to give up physical sex yet. Music to my ears. I told her I was not either but if it not possible, I could live with that. I followed a suggestion from another posting prior to surgery and purchased and read (Intimacy with Impotence by Ralph & Barbara Alterowitz). I found it to be very helpful.


Last Thursday 9 days post surgery We talked again about our goals for this adventure we have embarked on. My goal was to 1. Get rid of cancer. 2. Be Free of Cancer. 3. Urinary Control 4. Ability to have Intercourse. If I could never have Intercourse again I can live with that. Not desired outcome but I love my wife and would find other was of being Intimate. We are on the same page still and I am a lucky man.


After week one post surgery, cath removed. Dr put me on Cialis 5 mg every-other-day. Told me I probably won't be interested but started me on it anyway. The first few days after cath removal my tip has been sore. The cath would move in and out and it irritated me a lot. When you are leaky and sore sex is not on the top of your list. I told my wife I have a greater respect and understanding of what women have to go through wearing pads. My wife and sister-in-law get a big charge out of that.

Friday morning I was a little aroused laying next to my wife. The 21 yr old side says yes but the 55 yr old says you are still recuperating. As I held her close for a while, things progressed. I have been sleeping with a bed pad, Depends briefs, & a pad. No accidents during the night. Usually the pads are dry. Well we moved forward to try intercourse, with me hard enough to penetrate but not rock hard. This is pre operative condition so that is encouraging. with the help of KY (for both of our benefits) we were able to have successful intercourse. My wife was very understanding about possible leaking . She said she expected it. She has not read any of the books I have on Prostate Cancer but we do talk about it .

I write all this not to brag. I am sympathetic to your situation and only hope your wife will be as understanding as mine has been so far. Each case is unique in the recovery from PC but we have each other to draw strength from. The information I have gleaned from this site has helped me greatly on my attitude towards recovery. I share this information with my wife and we talk about it regularly. Don't loose hope about sex. You have a new normal now that can change in the future. I hope you can keep conserving about how things are progressing with your recovery. Silence is a killer to any relationship. Don't put pressure on your self on where you think you should be. It will be what it will be. Embrace what is possible.

I really got angry reading the OP, but the answers were right on target.

We have enough horror to deal with. One would think our wives would be supportive. Most of us old farts take our vows seriously.

I have to admit the "b-word" came to mind, and I thought that was not part of my vocabulary.

I wish I could suggest something. Counseling might help

Mel

Bronson, Welcome to HW. Sorry you need to be here.

Don't feel bad, we all have different issues to deal with and very different issues with wives.

PC changes sex - ED, loss of libido, etc but factors like stress can make it even worse. When the equipment is broken, it takes time to get it working again and it will never function like it did.

I keep rereading your post and the other replies - I can't help but think that there are other problems going on between you and wife that need to be addressed.

we're here most days, keep us updated on your progress.
Hang in there, you never know what will come up.

Andrew

Bronson,

I've been kind of waiting for Gedman to pipe up so I could also recommend that you (and maybe your wife) watch the videos he links to in his signature. The ones called "(I, II, III)". They are seven years old but remain as good an introduction to the problem of sex after prostatectomy as you are going to find anywhere.