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Posted 7/5/2007 12:44 PM (GMT -8)
Diagnosed in Jan 2007. PSA = 2, Gleason 6. Had Radical Prostatectomy in April. Cancer was contained to gland and prognosis good for being cured. Will have first post-op PSA results in two weeks. No incontinence issues, thank God! ON the other hand, have not yet been able to get an erection. Doctor assured me he spared the nerves and function should return. The wife and I have been able to be intimate and I've been able to have orgasms, although with much effort. My wife has been very supportive and loving with the current situation.
The problem is I guess I'm feeling depressed about the ED and have had a hard time with it and I am becoming a jealous husband. It seems my insecurity with the ED has made me paranoid that my wife will go elsewhere for sex. I know in my heart that she loves me no matter what, but these thoughts creep into my mind and they are hard to shake. I'm going crazy with this. We actually have had some fantastic love making sessions without me having an erection. The other day she gave a hug to a close male friend of ours and the site of that drove me crazy. I never had this feeling before. There have been other similar situations in the past weeks and I don't know what to do.
My doctor says to be patient and the ED should go away. But I don't know if I can wait. Has anyone else felt this way? This is making me crazy!
Posted 7/5/2007 1:37 PM (GMT -8)
Buck, do not mean to be too harsh on anyone here but take it easy. Your only 3 months post op. It takes time to get things working agian. You should be thankful you are not having the incontenance issuse myself and a few others are having to deal with.
Just be thankful for what you have and keep working on it.

KW
Posted 7/5/2007 2:06 PM (GMT -8)

  HI JBUCK  Cool your jets you are only 3 months out. I am 9 mounths out and ED is still a problem.  I have tried different ED drugs with no help from them. I still do not get aroused like before but things are starting to work. From most everything I have read our women do stand beside us and support us in every way. Hopefully some women in this fourm will write in response to you and let you know this.

     John 

 

Posted 7/5/2007 2:40 PM (GMT -8)

Jbuck,

While others have impressed upon you that it is too early to believe that your ED is permanent they have not offered alternatives and it sounds like your urologist has also not suggested interventions until your natural erections come back.  The " not being able to perform" syndrome is real and despite what other men may say I believe that all of them have dealt with it.  It is depressing and it is what makes you feel so much different after the treatment than before.  Sounds like you are motivated enough to move ahead with interventions.  The general order for interventions starts with utilizing one of the ED drugs.  If this does not work then it is combined with the use of a vacuum pump.  This will usually get you to the point of being able to achieve penetration but it does lack in natural like sex.  Next is the use of penile injections.  These are virtually 100% effective.  They give an erection very close to a normal erection and allow sex to be just like normal with the exception of having to inject yourself before hand.  If normal erections do not come back in a couple of years then there are the penile implants.  If you are not on some type of penile rehab program then you should get on one.  The best way to get over the depression is to take control and do something.

Tamu

Posted 7/5/2007 4:26 PM (GMT -8)
Thanks to all for the encouragement. I feel kind of dumb. Your right, I should be greatful for what I have. It's just that my mental state has taken a complete 180. Maybe some kind of hormone inbalance. I read somewhere that testosterone can actually increase after RP. I thought maybe that was it and someone else had a similar experience
Posted 7/5/2007 5:35 PM (GMT -8)
Hi JBuck,

ED is a very sensitive issue for men and what you are feeling is very normal. You said that your wife has been very supportive and loving with the current situation. I bet that her having any thoughts about going elsewhere is the furthest thing from her mind and I'm sure ALL the women here would agree with me on this one. Please be patient and let your body heal. BTW, have you tried injectibles or the pump?

When my husband was in the hospital post surgery, the nurse came to get him for a class on taking care of the catheter. My husband was in a lot of pain and was too weak to go so he told her that I would go in his place. The nurse said to him "why should your wife go, did your wife have her prostate removed" and I answered "we both did" and so I went in his place. Believe me, everything that you're going through your wife is going through with you.

Best of luck,

AEG
Posted 7/5/2007 6:44 PM (GMT -8)
I don't know your specific marital situation but I bet when you re-read your post you'll see that you're speaking from a place of fear. That is understandable...you've been through a lot (yes, that's an understatement). Your wife will be there for you still, as you continue to heal.

Tamu gave you great advice. Follow that up and take a proactive stance. You'll feel better and your mind will settle down.

Read biker90's posts (Jim) - he had some dark days and is now on the other side. He's a great guy.

All the best,
Susan - wife of Don
Posted 7/5/2007 7:25 PM (GMT -8)
Thanks AEG. You're all right about this and your words have been very reaasuring to me. I'm glad I tried this site . I have an appointment in about a week and I'll discuss my options with the doctor.

Thanks

JBuck64
Posted 7/6/2007 11:08 AM (GMT -8)
Hey JBuck,

I am 7 months post-op and still have a total "flat tire" except when I work some blood in my penis by hand. My wife is very patient and we have found that experimental sex is fun but not like the real thing. I take 50 mg Viagra daily and 20 mg Levitra when we want to try it again. Also take 1500 mg L-Arginine daily.

I have a PSA check on 7/18 and will talk to the doc about shots then. I thought it would never come to the point of me shooting myself in the penis but its any port int a storm now.

Good luck...

Jim
Posted 7/6/2007 11:39 AM (GMT -8)
Hey Biker90, Thanks for the reply. It's been so encouraging to hear everyone else's story and I don't feel so alone in this. I also have a lot of good info to discuss with my Doctor next week. My wife and I have been experimenting a lot too and I feel we're getting closer than we've ever been. We've never talked about sex like this and not only what works for me but what works for her. If you don't mind my asking, what's T therapy and what does it do?

Thanks
John
Posted 7/6/2007 3:08 PM (GMT -8)
Hey John,

Yeah, we experiment a lot too. This experience has brought much closer. (Ya gotta look for the positives in this journey.)

T therapy is for those of us who have low testosterone levels. Some docs are totally against giving testosterone to PCa patients. However my (and some others here) level was so low and the effects were so devastating that I found a urologist that would perscribe it for me. I had been on T therapy for years before I got cancer. It was a serious decision to persue. T therapy and have a happy life with the risk of further cancer problems or deep, dark, devastating depression that almost caused me to commit suicide. I chose the former and will take whatever consequences that follow while being quite happy and sane.

T therapy is not for everbody and is quite controversial so if your testosterone level is normal, forget it. If not then research all your alternatives. Ya gotta take matters into you own hands to survive this disease.

Good luck...

Jim
Posted 7/7/2007 9:59 AM (GMT -8)
Buck! Buck! Buck! Buck! Count your blessings! Really it is way to early for you to be thinking your down for good. Count your blessings man! Here I'll count some of them for you from your own words. 1. "My wife has been very supportive and loving with the current situation." 2." Cancer was contained to gland and prognosis good for being cured." 3. "Doctor assured me he spared the nerves and function should return." 4. The wife and I have been able to be intimate and I've been able to have orgasms, we actually have had some fantastic love making sessions without me having an erection." 5. "No incontinence issues, thank God!" Some guys on this forum would gladly trade places with you any day. Buck, this disease can make you crazy and ruin a lot of good things if you let it. I think you really realize that and know the truth down in side. You say you have never had those paranoid "my wife is going to leave and go looking for sex outside our marriage before. That makes me think you have no reason to think this now. Has she ever given you any reason to think that?. Your wife really needs your support and also the support of your friends as well as her friends. Our women are more affected by this rotten deal than we can imagine. It will get better and better don't jeopordize your marriage with jealosy, insecurity, and paronia. You can beat this and you can get back up in the saddle and ride, it will just take some time. Stay with this forum and keep us posted. It is a wonderful place you can say what you really feel and can get some help from others who have been down the same road and are still travelling on it. May God Bless You and Your Wife. 58 years old now diagnosed age 57 8/17/06 PSA 4.3 Biopsy 5 of 12 cancer Gleason 6/7 Surgery 10/12/06 PSA 3mo 0.01 6mo 0.02 9mo 0.02 No leaks, no drips wonderful more intimate than ever before sex life. COUNT THOSE BLESSINGS!!!!
Posted 7/7/2007 10:54 AM (GMT -8)

Hey guy,  I just joined this site for the very same reason...to find others who are having ED even though the docs tell us it will "be ok" later.  I am 53.  Wife is 36.  I was diagnosed in Nov 06, had the Davinci procedure Mar 19th 07.  PSA was 5.2 at surgery time, and  Gleason was 6 before and after surgery.  Doc told me he got it all out!  Cancer was limited to the prostate.  Off the pads now, and ready to be "normal" again. 

But, my younger wife says she is ok with things...but I have HUGE reservations.  We have sex.....but it is not the same.  I can satisfy her..but not like I used to.  My little guy used to be huge, and sex was fun.  And sex was often.  Now I almost need tweezers to find him.  Orgasms are great for me, even without an erection.  I can do my own thing and really get enjoyment....and she can touch me the right way anytime and cause me to go into spasms of joy.  I tried the vac tube but it was a waste of money and effort.  Well, my doc got me set up for penis injections.  I can be expensive - but the senior doc of the practice at age 72 looked over his glasses and asked me.....do you remember how sex was at 16????  and he told me that these shots would get my dick "way" better than it was at 16. 

Well that is sort of the tueth.  It does get your dick very erect very fast, so fast you will be adjusting the amount of the drug to slow it down a bit.  I would recommend the shots for anyone in our pickle.  They work and work good.  An erection starts within minutes, and last upwrds to 2 hrs.  My wife loves it.  And I love it that she likes it so well.  Now the bad sides.  It is not very romantic to have to take a shot before sex, and spontaneous acts of sex are out.  and the procedure sucks....but it hurts to talk or think about it way more than the shot itself.  BUT the benefits far outway the down sides.  My wife now "brags" about the shot.  Tells her GF's that I am better than ever.  Helps my ego for sure.  And did you get this part......upwards to 2 hrs.  Know how much sex one can manage in that time????  My wife is usually smiling and asleep while I am still trying to get one more orgasm before the erection goes down.  What a problem......:)

I hope this helps you as much as it has me.  My insurance pays for the meds.   I have to pay for the needles....no big deal.  And the "off the helf" stuff in most pharmacies goes for $100 for 2 injections.  BUT, my doc sent me to a "compounding pharmacist" meaning he can make the stuff.  One 10 ML vial gives me enough for about 30 injections.  For $69.00.  This is much cheaper than cialis or viagra.

To make sure this wonder drug worked for me, the doc's male nurse administered a "test dose" in the office.  1/4 dose was given.  It worked fast, and presctriptions in hand off I went.  The hardest part of the whole ordeal (no pun intended) was the walk to me truck from the doc's office with a boner that would not go down till way past my driving time home.  I hope you have the same problem......and to he honest....after 3 months without an erection...I was pretty darned proud of it and kind of hoped others would notice...:)

Anyone who has been on the injections longer than my one month, i would appreciate feedback.

Posted 7/7/2007 6:19 PM (GMT -8)
Hey Newbie..... dangerone Perfect timing with your 1st posting!!!  Hopefully we will see a personal thread ~ so we can send a "Special Welcome"....  In Friendship ~ Lee & Buddy  «   bluebird ~   Moderator for Prostate Cancer Forum
Posted 7/7/2007 6:20 PM (GMT -8)
     Hi ~ John   *JBuck  &    Loved Ones,                   W elcome to…                                       HealingWell                                                                     and                     A    “ Special ”    Warm Welcome   to   You !        KNOWLEDGE     IS     POWER   ...   and   POWER conquers   fear   Keeping you close in thoughts and prayers as you move forward… You can’t help but feel the love and support here that’s being extended to you in your cry for help!!!   Thank you for taking the leap to join us!!!!  You truly are not alone!   You are going to find a world of understanding ~ right here!!!!!   So ~ take time to browse through the threads… and pull things that will help you on this specific stepping-stone in your path.   And if truth be told… just the postings here… are so powerful…..   We have been know to give gentle pushes... when we see a friend needing one.   So ~ here’s your     ~Gentle Push ~      onto a new stepping-stone.   Continue to move forward with all the positives that are coming to you….   In Friendship ~ Lee & Buddy     (Direct Link ~ just click on the title below and a new window will open!   Reminder … click on the REFRESH icon once you get there) Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)
Posted 7/7/2007 11:29 PM (GMT -8)
Not to put a damper on previous posts, but I am one that tried injections (see signature info), and am now being told I have Peyronie's as a result of the injections going in the wrong place. ED specialist said it looks like some shots weren't at 3:00 or 9:00 (I thought they all were, but what do I know?). The physician's assistant that was treating me for injections heard about the curving on one visit, and then saw it on a subsequent visit when he injected me, but didn't think it was a big deal. My urologist saw me last week and at the last minute checked me visually and with his fingers, felt plaque, and didn't seem to think it was a big deal. Only after I freaked out a bit (hey, Peyronie's is scary) did they say see the ED specialist, who said I am doing damage with the shots.

So, be careful with those injections! My little guy was "huge" before as well (to use the scientific terminology of a previous poster), but now I think he's shrinking, besides curving (not even in a good direction!). Plus, I think I'll be pretty reluctant to try injections even if the Peyronie's subsides or halts.
Posted 7/9/2007 12:22 AM (GMT -8)
JBuck, The advice given so far has been pretty much on point. Hard to add to. Be patient. Be calm. Be glad your wife loves you and is willing to "help".

I bumped up the thread where injection therapy is discussed. I encourage you to check it out. I had both nerves spared but didn't have a doc blow smoke up my @**. I was told the CHANCES were good function would return. I knew there was a chance it wouldn't no matter how good he was at surgery. You should be aware of that as well. Thing is this disease can define you if you let it. Don't!!! Life without natural erections is FAR better than the alternative.

I understand completely how frustrating it is to not be able to function. I had a great sex life. It is kinda hard to deal with making love the night before going in for surgery and then not being able to SEE the darned thing for 6 weeks. Helmet heads are horrible for the male ego. For a year after surgery I used the pump daily in hopes of "waking up" my little buddy. Didn't work. My wife didn't like the feel of the bands and orgasm actually hurt. Pills were expensive, not covered by insurance and had no effect. My Doc talked to me about injections but I actually passed out on a routine basis when taking injections of ANY kind. NO WAY was I going to give myself a shot THERE!! But, as I said after a year of uncomfortable, less than satisfying attempts at intercourse my wife gently persuaded me to at least explore the injections. In November of 2006 I did.

Here it is 9 months later and over 80 injections. I need only a tiny .03cc of trimix. Costs me less than a buck a shot. No signs of Peyronie's. I am happy, my wife is happy and I just had the first natural, usable erection since my surgery. No pills, pumps or injection. Is it because of the injections waking up the nerves or just natural healing? Who can really say? Will it happen again? I don't know. I don't really care. If it does, I will be happy. If it doesn't, I will still be happy. I am breathing, loving, working and appreciating life. I hope you can as well.
Posted 7/9/2007 10:48 AM (GMT -8)
Hey everybody, Thanks for the encouragement and all the great info!! I feeling well armed for my next doctor appointment. I had a really deep, intimate, and somewhat painful discussion with my wife about all this and the result was, I feel closer to her than ever before and feeling much better about myself and our situation. This site is a wonderful thing.

THanks again!!

John
Posted 7/9/2007 4:59 PM (GMT -8)
Hi JBuck,

Thanks for keeping us posted. I'm so glad this issue was resolved for you.

Best of luck to you.

AEG
Posted 7/9/2007 5:07 PM (GMT -8)
Stay with us Buck because down the road you will offer encouragment and help to someone out there right now that doesn't know he has prostate cancer and when he finds out he will need you and your story. This was my case when I joined last year after being hit with this sledge hammer to the chest. I thank God for all the people who shared and are sharing on this site everyday. I must be losing my vision jsut noticed it's J for John not just Buck  JBuck it is! I kinda liked the sound of just Buck. :-)
Posted 7/9/2007 8:59 PM (GMT -8)
Actually, in real life, a lot of people call me Buck. I'm sure I'll be sticking around and I look forward to sharing with whoever I think I can help, like all of you have helped me.

John
Posted 7/12/2007 5:14 AM (GMT -8)
Hello to all members,
I am traveling nurse and stumbled onto this site when looking for information on penile implants. This is an area I have little experience in and the hospital I will be at performs many of these procedures to treat ED. Your postings have assisted me in what may be questions or concerns of my patients, whether they suffer from Prostrate Ca, ED or other urological conditions. Thank-you for your blunt honesty in your posting. I would like to also refer my patients to this website, at times it is easier to discuss concerns with those whom have personal experience.

JBuck,
I personally cannot relate to ED, but following a total hysterectomy(age 39) I can relate to the sexual disfuntion and lack of ability for arousal and the inability to have an orgasm. These types of surgeries and medical procedures take time to recover, not everyone fits into the model of a perfect recovery. We are all individuals. The mind can plan tremendous part in the individual recovery. I had to get out of my head and stop trying so hard and allow my body to heal. I was fortunate and my partner was very supportive, many nites he just held me when I was in tears, due to the frustration of my inability to feel aroused. I loved him, I had the wants/feelings of desire but my body was... dead...no response. The more I tried the worse it was. I felt he should move on, that he needed to be with someone who could "statisfy him". I would watch him interact with other women, and wonder... Thank God he didn't allow me to push him away. It took time but we were able to discover a deeper type of intimancy, lovemaking involves more than the act of penetration. I eventually started hormone therapy, it has now been 2 years, our sexual relationship is back to where we were and then some...occassionally I experience difficulty with arousal, but only when I forget to stay on my hormone therapy(nurses can be noncompliant patients too).
Give yourself the time to heal and openly discuss your concerns/fears with your wife. Allow her to help, let her work with you during this time. She sounds very loving and supportive. Don't let jealousy get in the way, don't push her away...embrace her concern... remember to COMMUNICATE...last but not least, discuss your concerns with your doctor, perhaps you may need medical intervention, be informed...ask questions.
Posted 7/12/2007 7:34 AM (GMT -8)
THanks for the words of support. It"s been difficult for me. One big problem is my libido. Prior to surgery, I was always up for lovemaking. Surprisingly, my libido has increased. The attraction to my wife and the urge to make love has doubled what it was before but not being able to perform is frustrating. My wife and I have been intimate and a few times it was really fantastic, but my wife is premenopausal and not always interested. So I get in bed horny as hell and she immediately falls asleep and then I lay there and can't go to sleep so now I have an insomnia problem. We've gotten closer and had some really heartfelt discussions. I just need to know if my feelings of depression and insecurity are strictly mental or are they the result of a hormone problem. It's like my personality has changed. This sight has been good to get this off my chest and the responses have been helpful. I think I'm going to ask my Doc for a testosterone test. I'm also seeking some counseling. Well, thanks for listening.

John
Posted 7/12/2007 7:03 PM (GMT -8)
Buck, It is probably a very good proactive approach to check both avenues, psychological and physiological. Finding out where a problem is coming from can be very helpful. I would say this.... You are only 3 months out from your surgery. While we hear of guys who have regained erectile function real fast, they are in the minority. A real small minority. It can be a mistake to focus on this issue. You will heal at the pace your body determines. Getting stressed about it can only hinder the healing process. Try to be calm.
Posted 7/13/2007 3:46 AM (GMT -8)
Buck,

Hypogonadism..hmm, I'd be shocked if you had it. The ED will resolve in time whether by natural means or with the assistance of one of the many treatment modes available. The insecurity and self esteem issues are self resolving in time as well. With patience and time, all things are possible.

Your insecurity is normal. Not suffering in silence was the best thing you could have done for yourself! From post # 1 until your last post there is already a difference  :-) . It really does get better as you get better. Its been a few months so consider shots at this point perhaps. Doubt you'd need but a tiny dose at 47. My Paul used only a 5mcg dose of Caverject and only needed that for a short while. He did however wait almost 8 months to begin them but, he'll say he wishes he had tried them much sooner. I can't think of a better way to give you that emotional boost than a good romp with familiarity. Injections were a welcomed boost for Paul. Give it some thought but don't push yourself. You still have a ways to heal before worrying.  

The perimeno part is mother nature unfortuantely. Your DH will have to speak with her Gyn about that..there are ways to help if it becomes a problem. Good Luck and hang in there.

Swim

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