When good sex goes bad: seeking the female perspective

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silkflour
New Member


Date Joined Mar 2008
Total Posts : 7
   Posted 3/21/2008 8:21 AM (GMT -7)   

This is my second post, first new thread.  Let me just plunge right in.

 

Since my surgery last December, my wife has lost her sex drive. We had a highly active sex life prior to surgery, and I honestly believed we would find new pleasures on the other side. That belief helped me remain optimistic and cooperative from the beginning. But the reality has been quite disappointing for us both. I guess I was just being delusional--or maybe naive.

 

Two weeks after the catheter was removed, my surgeon recommended that we try Caverject. The results were pretty dismal. Not only was my cock (so sad to call it that anymore) painful and pathetic, I leaked and, at orgasm, sprayed. Intercourse was impossible. We were, understandably, pretty dicouraged by the experience. But over the next few days we continued to try and, finally, I succeeded in getting a semi-hard erection, which provided orgasms all around. What a wonderful night that was! But, because the pain persisted, I decided to try Muse. Nothing. My options were getting limited.

 

I started to get depressed.

 

After a couple of weeks of abstinence, my wife and I were making out, and she got that look in her eye. Being typically male, I grabbed a syringe, increased the dose, and gave myself another injection. The result was a raging purple monster, but it hurt so much I couldn't focus on intercourse. I had to endure almost 4 hours of intense pain before it went down. Needless to say, we were both terrified. 

 

When I told my doctor about it, he prescribed a tri-mix solution. I followed his directions precisely, and, after a couple of failed attempts, ended up with the same painful 4-hour ordeal. I refuse to go through that again, so I bought a pump, which I'm practicing with in private. 

 

Sadly, I think all the awkward and artificial trappings as well as the failures, the urine, and the double priapism have broken my wife's spirit. We still make out, but there's little sexual contact at all anymore. It's just so painfully awkward: she's broke and needs my support, but I'm broke and need affirmation. After 14 years of sexual bliss, we are, I fear, beginning to drift apart.

 

Any insight into how to regain our bliss--or at least to find some mutually satisfying middle ground--would be appreciated.

 

Thanks,

 

Silkflour


PSA readings of 5.5 and 5.6 (six months apart) prior to biopsy
Diagnosed with "aggressive" prostate cancer on (befittingly) 9-11 of 2007; Gleason scores of 7 and 8 in nine out of twelve segments
DaVinci robotic surgery by Dr. Randy Fagin on 13 December 2007; "wide margin" taken with no attempt to spare nerves
Negative pathology (woo hoo!)
Post-op PSA showed no detectable cancer  
Catheter removed on 21 December
Mostly continent as of 19 March 2008
Still struggling to find the right fix for my ongoing impotence
 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 3/21/2008 10:44 AM (GMT -7)   
Number one...beat that surgeon for such a bad idea! Of course there would be pain and spraying just 2 weeks after having had a cath in...ouch! That should never have happened. Do youself a favor and give 3 days a week on one of the PDE5's a chance for a while. Not for the nerves, although you could be one of the miniscule few who do get errections after losing nerves to surgery. Not unheard of, just very rare. There is evidence that a small dose a few days a week is still healthy for penile tissues, nerve sparing or not.

You're still quite early into recovery. Your poor wife hasn't lost interest. She's deathly afraid of you getting hurt again. In time, that'll fade. As your recovery continues to improve things, she'll become more relaxed again. My dear....You have to allow for your body to heal. Relax, do a little rehab with the pump and take regular doses of one of the oral medications and let yourself get better. Begin with a tiny, tiny dose and work your way up to the perfect dose of the BiMix. It isn't absolutely necessary to get it right the first try. Working UP TO a dose that works best is safe and healthier. Several guys in here can help with pointers in the shot department. There are 2 things cannot be rushed....eating a good steak (spinbusquit says so) is one of them :>)

hang in there,

Swim
 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 3/21/2008 11:27 AM (GMT -7)   
Aw, c'mon folks......39 hits and only 1 reply for a man asking for a little support? We can do better than this!!!!!
 


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 3/21/2008 12:03 PM (GMT -7)   

Hey Silk,

At the risk of souding corny, "Love conquers all!" it may seem like the end but its not if you love each other and keep working at it. I will not waist you time w/ a long story about what happened to me but I will tell you my wife and I had a sexless relationship for about 3 years after my RRP back in 2003. If it were not for our special love for each other and this forum, we never would have made it through the ordeal. But we did and now have a wonderful yet different sexlife. I would be glad to talk to you or write more if I were not at work. I am leaving for the weekend to a place w/ no computer access but will look at your post when I get back Monday night to see what the others tell you. Good luck and hang in there!

Your friend,

Pete 


55 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. Testosterone Theropy (Testim Gel)since 12/06. Fighting to stay upbeat daily, I am's what I am's and that's all that I am's! (Popeye)  55 and still alive!!!


DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 3/21/2008 12:26 PM (GMT -7)   
I respect the fact that every situation is unique, but I will offer my perspective for what little it might be worth....lol.
 
I had surgery a month to the day before you did...am still incontinent although making GREAT progress the past few weeks...started at 12 pads a day, now down to about 1/3 of a pad a day.
 
I had a hernia to deal with that set me back some...a second surgery 8 weeks after RP surgery....but the approach that we have taken is the following:
 
1. Start feeling like a human again (get past my second surgery).
2. Get the incontinence under control
3. Use Viagra and the pump for therapy once the incontinence got much better, as it has the past 3 or 4 weeks.
4. Start trying bimix injections, with the understanding that it might take several tries to find the right mix.
 
We have not tried sex and will not until I start the injections, which is probably one to two months out.....unless of course I suddenly start having erections without injections.
 
For us, this slower approach seems to be working fine emotionally and physically....although I realize that it might not for others.  We want to take our time, be patient, and have successes along the way to what will hopefully one day be a full ED recovery.....and minimize frustrations for both of us.
 
If that means that we don't have intercourse again until May or June, no problem.  We are thankful to be alive and are looking forward to the first time since surgery, whenever that turns out to be.
 
Hang in there and good luck to you!!!


Danman Bob
Age 57
Nerve-sparing, open prostate surgery November 13, 2007
Gleason score 9, PSA 14
Biopsy result - 9 of 12 sticks showed cancer
Despite high Gleason score, cancer was confined to the prostate
Possible post-surgery radiation therapy...decision likely in late April 2008, depending upon PSA at that time
Unrelated surgery January 2008 delayed incontinence recovery, which is now showing good signs of improvement (fraction of a pad a day as of March 2008)
Began using Viagra 3 times a week December 2007 to stimulate blood flow
Began using Osbon Erec-Aid Esteem manual pump for therapy mid-February 2008
Will probably begin using bimix injections in addition to Viagra and pump in May 2008

Post Edited (DanmanBob) : 3/21/2008 1:29:09 PM (GMT-6)


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 3/21/2008 12:54 PM (GMT -7)   
Hey Silkflour,

As has been mentioned, you are very early in you recovery. Things in the sex department heal very slowly and it talkes patience on your part as well as your wife. Swim's advice about taking pills and doing rehab is well taken.

I had to experiment with combinations of Viagra and Trimix to finally get it right. And yes, 4 hour erections with pain are not fun but once you get the right dose you won't have that anymore. My uro started me with .1 cc of Trimix with was waaaaay too much for me. I now take only .03 cc with 50 mg of Viagra and 1000 mg of L-Arginine over about 2 or 3 hours. That produces an erection that lasts about 1 hour with no pain. That's better than I have been in 20 or so years. (I'm an old guy.)

I had some setbacks after surgery and didn't really start any penile rehab for about 7 months. Even so my wife and I have better sex than we had in many years before cancer.

Be patient, make a rehab plan and follow up on it, talk to your wife about it and like Jimmy V. said, "Don't ever give up!"

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
PSAs from  1/3/07 - 1/17/08 0.00. 
Next PSA test on 7/17/08
"Patience is essential, attitude is everything."
 


DesertGal
Regular Member


Date Joined Dec 2007
Total Posts : 65
   Posted 3/21/2008 1:49 PM (GMT -7)   

Hello Silkflour,

Here's my female voice on the subject! 

Amen Danmanbob! If that means that we don't have intercourse again until May or June, no problem.  We are thankful to be alive and are looking forward to the first time since surgery, whenever that turns out to be.

We feel exactly the same way.  Happy to be alive and have so much to be thankful for.  We feel like we've been handed a second chance in life.  Sex is such a small part of our life and marriage compared to other more important areas.  We too had a very active sex life, but we went into this knowing the possible consequences and are patiently waiting for him to heal and hopefully gain back some of what he had before surgery.  If it doesn't happen it doesn't happen, it's not going to change anything between us.  We are still very close and intimate, and find that humor helps a lot. My husband had a partial nerve sparing surgery, and so far there's no sign of an erection.  We still have sex, but without intercourse, and the orgasms he has now are very intense and enjoyable for him. Sometimes we have to take a different road in life, but the destination is still the same.  I'm going through menopause, or mentalpause somedays!  That has diminished my sexual desire too and requires more stimulation and foreplay, and now his desire is much less also. But it's not causing any stress for either of us, it's life.  We're just taking the other road for now, and it can get a little bumpy at times, but it's okay.. we have 4 wheel drive. Buckle up!
 
It sounds like you are trying too hard.   Relax and be patient that all good things come to those who wait.  The best thing you can do for you and your wife is to talk about your feelings and frustrations.  I could live the rest of my life without intercourse and still be totally sexually satisfied. I'm so proud of my husband and how he's handling all of this. I know it's hard for a man to not be able to perform, but really... it's okay. I can't speak for all the women, but I won't mind at all if he ever gets another erection.  I still love him just the same and think very highly of him.  He's my best friend and we are in this together to the end.  I think this has brought us even closer if that's possible. 
 
Best of luck to you.
 
Marie
Husband 55 years old
No symptoms
PSA taken on routine health exam
06/18/07  PSA 9.2
07/14/07  Put on antibiotics for a month
09/18/07  PSA 8.77
09/18/07  PSA % Free  9.61
10/17/07  Biopsy =  Gleason 3 + 4  (7)
10/17/07  Biopsy 40% Right Side less than 5% Left Side
12/31/07  D Day!  Davinci Surgery Day - Jon Huntsman Cancer Institute
12/31/07  Left side nerves spared, Right side partial, right nodes taken
01/11/08  Cath removed, post-op gleason 3 + 3 = 6, nodes clear
                Margins - capsular invasion but no penetration.  T2C
02/08/08  Dry pad free
02/08/08  Started taking low dosage of Viagra
02/08/08  1st Post-op PSA Undetectable!  0.1


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 3/21/2008 2:47 PM (GMT -7)   
Hi Silk,

I think since you have a lot of insight into how your wife may be feeling (and she may not be completely broken - more broken on your behalf which she will get back as you recover), then further communication is the go. You need to talk to her about it as a joint thing, and yes, patience is the goal as your recovery is very early. You may need to be prepared to accept change and healing for up to 2 years, but it (patience) can be managed better together if you can get some quiet time (and build up the courage - as it is a difficult conversation to start with, but someone HAS to start it.. ). Hope that helps.
Creed_three (Lana & CJ)
 
Husband CJ aged 50 yrs (49 years at diagnosis and surgery)
PSA (2002) 2.1.  PSA (2006) 3.5.  1 x (5%) core of 12 positive at biopsy. 11 cores negative. Open Radical Prostatectomy with nerve sparing, on Tuesday 17th April 2007 (Sydney, Australia).
Gleeson 3 + 4 = 7.  Cancer confined. 1st PSA 0.01 (June 07) 2nd PSA 0.02 (Oct 07) undetectable. Next PSA March 08.


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 664
   Posted 3/21/2008 9:29 PM (GMT -7)   

Hi Silkflour

You are echoing the feelings of many people who come to this forum and probably thousands of others who haven't found this supportive group. You have been given good advice here.  I am over a year past surgery and my hope for a sexual recovery has still not been met. Fortunatly my wife and I have found many ways to satisfy each other.  However, it is not like it use to be.  Part of that has to do with getting older.  I don't think I saw your age, but if you are 42 your expectations will be much greater than if you are 58. That is a reality that we all face even if we don't have to deal with cancer. I am an older but active guy past 60.

It is common to try to push the envelope when it comes to regaining sexual function, but you do need to try to step back and wait for a while.  That should not mean no sexual contact, in fact you should try to stay close and intimate with your wife.  penetration and intercourse is not all there is to sex.  I admit that I would love to not need to inject or pump or take pills.  But as long as they are doing something I will continue to keep trying.

I am now using a bi-mix injection.  The pain is gone.  It is a work in progress.

Keep trying, things will improve. Communication helps...tell your wife how you feel, and ask her what she needs.


biopsy 10/16/06
T2A,  PSA 4.7
Gleason  4+4=8  right side
DaVinci Surgery  1/16/07
Post op confirms gleason 4+4=8
no extension or invasion found
no continence problems
PSA 90 day -.01  , 6 month -.01 , 9 month +.02 , 1 year +.02
Ed problems continue
Caverject/viagra /discomfort
02/28/08  start Bi-Mix Rx
 


GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 3/22/2008 5:06 AM (GMT -7)   
Hi, Silkflour - I'll start with "never give up."

We had surgery with the same doc - he told us and I quote "get it up, look at it, take a picture and be proud - but DON'T do anything with it."

It takes several weeks to months for healing and the pressures of orgasm can certainly cause pain if not some further damage.

We talked about how to prepare ahead of time. One biggie for us - I bought a tube of K-Y, because we know that with the assistance of pills or whatever, if it hits - my husband might be ready but I might need a little more time. That little tube is great! Going in dry, it's painful for your wife and that could be part of the problem. It's also possible she may just be entering pre-menopause and her own sex drive is taking a belly flop.

There are many reasons - talk about it; otherwise, it will hang over you two and that's not what you need to concentrate on right now. How wonderful that you're thinking of your wife - it's a two-way street.
Husband: Age 67
PSA had doubled in 14 mos to 4.3/Gleason 6
da Vinci 8/06 in Austin with Dr. Randy Fagin
Post surgical path shows encapsular penetration; possible bladder neck involvement.
PSAs remain undetectable; no further treatment at this time.
Next PSA: April 08


Bootheel
Regular Member


Date Joined Oct 2007
Total Posts : 300
   Posted 3/22/2008 12:27 PM (GMT -7)   
Hi Silkflower,
I am about 3 weeks post catheter. We have attempted intercourse with the pump and two rings and have been successful on occaison. As far as the spraying of urine is concerned, I have used a condom to coorect the problem. According to my Uro, leaking is very common early on when attempting sex. Once you gain some continence control it will change. Be patient. We too had a terrific sex life before surgery and it was somewhat of a shock afterwards. Check on this forum about Incontinence and sex. I believe you can get there by clicking on the second line of the forum, "Prostate Cancer Resources". There are a lot of threads about how each one of us deals with the problem. Good luck and don't despair
Age 65
Diagnosed 10/12/07
PSA 6.3
Biopsy 18 core samples, 2 positive <5%
Stage T1a Gleason 6 (3+3)
LRP  1/29/08
Post-op
Gleason 7 (3+4)
1 positive margin (.3cm)
T2C 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 3/22/2008 12:41 PM (GMT -7)   

Hi ~ Silkflour & Loved Ones ,

 

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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 3/22/2008 12:46 PM (GMT -7)   
As you can see you are not alone. Welcome to the best site on the web for patient to patient interaction that I could find in my time of need. Using Caverject so soon after surgery is rare. I certainly hope your doctor advised of that. Take it easy and give it more time. The advice above is consistently encouraging you to be patient. For some the return to active sex life is quick, and for others it's a worrisome process because they have a discouragingly slow progress. If your initial attempt would have worked, you would have been at light speed. Stay with us, and we will be here to lend support, ideas, and experience. God Bless you and good luck.

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (1/08): <0.1
I will continue HT until May '09. 
Visit my Journey at:
 
STAY POSITIVE!
 
Prostate Cancer Forum Moderator


Valentine08
Regular Member


Date Joined Mar 2008
Total Posts : 30
   Posted 3/22/2008 4:51 PM (GMT -7)   
Another spousal reply:  You know of the numerous women I've talked to regarding the down side of prostate cancer, all, universally, totally, overwhelmingly, unanimously stated that they'd just be delighted to have their husbands alive (the big #1 concern) cancer free and ideally, continent.   There was no number three in terms of critical importance.  Or as one wife said, "let's focus on what's really important here."   Re: erection and intercourse: If it works, great, if not, we'll work around it and improvise.. Now this may not be the way you guys see this at all, but trust me, I've talked to a lot of women.   And yes, everything I've read too suggests you guys need to take some pressure off yourselves for early performance.   Been told this could take some time...like a year.  I would hope spouses would be supportive and patient.  Replies on this board from wives sure seem like they have the right attitude.  Glad to have my guy, even though he is right now discouraged and frustrated, being 3 weeks off the catheter, and always "On guard", and with a condition that "depends".    
Val's spouse  
Age 59
PSA ; PSA 9/07=3.4; '06=3.2 DRE Negative; '05=2.4; '04=1.7
Biopsy 11/07 =  Stage T1c, 12 cores, 2 positive
Gleason score= 3+3=6
DaVinci Robotic RP surgery: 2/14/08
Path report: Gleason= 3+4=7; Stage T2c


Bootheel
Regular Member


Date Joined Oct 2007
Total Posts : 300
   Posted 3/23/2008 3:12 PM (GMT -7)   
Amen Vals wife,
I'm about three weeks off the catheter like your hubby. We had a good sex life prior to surgery. Now we improvise until the real thing comes back. I'ts not that bad for now. I'm alive and thats important. As the saying goes, "what good is an erection on a dead man".

Joe
Age 65
Diagnosed 10/12/07
PSA 6.3
Biopsy 18 core samples, 2 positive <5%
Stage T1a Gleason 6 (3+3)
LRP  1/29/08
Post-op
Gleason 7 (3+4)
1 positive margin (.3cm)
T2C 


silkflour
New Member


Date Joined Mar 2008
Total Posts : 7
   Posted 3/24/2008 5:17 PM (GMT -7)   
Thanks to all of you for your thought-provoking responses. I posted a reply before letting your wisdom and gentleness sink in; I hope you didn't get a chance to read it before I had the presence of mind to delete it.

I feel better today than I have in a while. I obviously need to reevaluate my priorities and gain a new perspective on things. I'm very grateful for your support.

Thanks,

Silkflour
PSA readings of 5.5 and 5.6 (six months apart) prior to biopsy
Diagnosed with "aggressive" prostate cancer on (befittingly) 9-11 of 2007; Gleason scores of 7 and 8 in nine out of twelve segments
DaVinci robotic surgery by Dr. Randy Fagin on 13 December 2007; "wide margin" taken with no attempt to spare nerves
Negative pathology (woo hoo!)
Post-op PSA showed no detectable cancer  
Catheter removed on 21 December
Mostly continent as of 19 March 2008
Still struggling to find the right fix for my ongoing impotence
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 3/24/2008 5:41 PM (GMT -7)   
Hi Silkflour,
I wouldn't sweat worrying about that kind of post. We are tossed into this emotional whirlpool and have to find our way out on our own. So making knee-jerk comments or anything like that is something I've seen this site turn around before. You are so right about these folks. Wisdom, gentleness, and friendship is what you have found. Friends experienced in what you may need help with. We are very glad to have you here. God Bless and stay with us. You will get help, and even give it. That part has a profound effect as well.

Tony


Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (1/08): <0.1
I will continue HT until May '09. 
Years in Remission (3/23/07): 1
Visit my Journey at:
 
STAY POSITIVE!
 
Prostate Cancer Forum Moderator

Post Edited (TC-LasVegas) : 3/24/2008 11:25:56 PM (GMT-6)

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