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Posted 7/21/2008 3:42 PM (GMT 0)
Hi,

I just found this forum about 10 minutes ago and not really read through it completely, so if I am repeating or not doing something incorrect, forgive me. I was a little excited to find this forum.

My husband was diagnosed in October 2007 and had RP Nov. 13 2007. Things went very well. Contained. Incontinence not really an issue (pad free after about 3 or so weeks). Erections were great. Sex was resumed. Now, 7 months later... we are having problems. Has this happened to anyone? It is like we can't get an erection anymore. We are devastated. We started off with meds, but then were able to have erections without having to use them. We are now keeping a log to keep track of meds we've tried (and what happens on them, because we cannot remember what it was like when we first started out after surgery with the meds). 100 mg of Viagra did nothing for us last night. Leveitra (I can't spell).. the lowest dose.. did nothing.

Any suggestions, words, tricks, potions :), would be greatly appreciated.

Thanks,
Jeri
Posted 7/21/2008 3:58 PM (GMT 0)
Hey Jeri,

Welcome to the forum and sorry you have to be here.

Strange things happen to our bodies after surgery. Nerves get disturbed and its pretty unpredictable as to when they heal and get their pathways established. Things change for a year or so, it seems to be my case anyway. Its great that his sexual function came back so quickly after surgery so don't give up. You will find a wealth of information on what we used here on the forum. I use L-Arginine, Viagra (generic) and penile injections using Trimix. Yeah, that's a lot of stuff and it sure is different than the natural spontaneous erections before cancer but that is just the nature of this disease. We get used to doing things differently in order to have a quality life again.

Please stay with us. We can all get well together...

Jim
Posted 7/21/2008 4:15 PM (GMT 0)
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Posted 7/21/2008 6:50 PM (GMT 0)

Hi

His operation was on the exact same day as mine. To date I have not had an erection of any kind. With or without meds. I had no preblem prior to the operation. I am assuming that because he has already experienced erections that this is only a minor setback. Please post all the pertinent info such as PSA before and after, age etc.

Good luck,

Pux

Posted 7/21/2008 7:36 PM (GMT 0)

Hi Jeri,

Other meds can also cause temporary ED. eg I briefly went on Imiprimine for incontinence, but immediately discovered no more erections. Stopping it allowed erections to return.

Is he taking any new meds, especially anti anxiety meds?

Ed

Posted 7/21/2008 8:34 PM (GMT 0)

Hi Jeri,

I had a couple of erections right after surgery with the Cath still in.  Then my function seemed to lessen quite a bit and now at 4 months it is coming back with out Viagra and much better with Viagra.

Almost as good as before surgery but not quite.  Leakage is still and issue during sex.  Getting better month by month.

Frank

Posted 7/22/2008 12:47 AM (GMT 0)
Hi Jeri, Things will get better. You have youth on your side....Don't worry and take a lot of walks. Dont even think about sex for awhile. Just be happy he is there and cheerful....Cheerful is good..! I'll take cheerful.. Di
Posted 7/22/2008 12:47 AM (GMT 0)
Just a suggestion from a totally impotent young fellow due to radiation and medication. I would encourage you guys to relax and enjoy life and each other. Once you let go of having to have an erection and learning to stimulate each other throw loving, rubbing, hugging, etc, I am betting the erection will come back. Please do not create any expectations. This will bring you two to a bond you did not know exist. Love life and each other and who knows what the future will hold. I am thinking one day the passion will be so great that having an erection will just be icing on the cake.

peace and love
Dale
Posted 7/22/2008 1:47 AM (GMT 0)
I know one thing for 100 percent sure. A dead man can not even hold his love one in his arms.

Richard

Posted 7/23/2008 12:24 PM (GMT 0)

Greetings, Jeri.  I had surgery on Feb 4, 2008, catheter out on Feb 13 and have done very well.  Doctor gave me Cialis to use just to "stimulate" things.  However, had an erection on Feb 17 so called the doc's office and the nurse said not to take the meds if I didn't need them.  What we found over the last several months is that the erections, while sufficient, were not as firm and there was definite shrinkage.  At my second 90 day PSA test (zero yeah ) I asked about shrinkage and not being quite as firm and he suggested I try Levitra 10 mg.  It has made a huge difference (no pun intended).  With Levitra I am back to normal size and firmness.  Without Levitra I still get erections but not as firm. 

At first I was somewhat disappointed that I seemed to be going backwards after it looked like we wouldn't have ed issues.  However, I realized there is a reason doc's want us to take the ed drugs shortly after surgery regardless of whether or not we are having issues.  I wish I had gone ahead and started in late February rather than waiting until July. 

Hang in there.  By the way, we firmly believe this is a couples issue.  Men don't get erections, couples do.  I'm glad to see you are very involved and I'm sure your husband appreciates it as well.  David

Posted 7/23/2008 2:43 PM (GMT 0)
Identical problem here. Was going gret guns at ten weeks. Then at five months it all went away - not even with viagra. The surgeon insisted that because it HAD been working that it was not a nerve issue. I now disagree - I think things change, morph etc and i am now seeing improvement at 8 months - but much more inline with the average experience. I thought it might be welbutrin I was on and so stopped it. There was no visible improvement. I am now back to using a pump as much as possible and it seems to help. i forget that it needs rehab every day - like any other part of the body.  Get on viagra and start working it out either together or by himself and use a pump. It will all only help.
Posted 7/23/2008 6:18 PM (GMT 0)
Thank you so much for posting. We wish we had found this board months ago! We appreciate the kind words and the your stories. Keep them coming (no pun intended tongue )
Posted 7/24/2008 1:42 PM (GMT 0)
Guess someone was thinking like me when you created your name here...

Anyway, glad you found the site.  Can't speak to the success then subsequent failure, as i did not have success with erections following surgery.  But my doc started trimix injections 6 weeks post surgery which was far less difficult than i ever thought it could be.  Honestly, it becomes pretty easy to do and the results give you oppty to carry on your sex life which is no small thing. 

Personally, the meds...levitra, cialis, viagra... all make me feel lousy...headachey, stuffy nose, flushed, muscle aches, etc.  The trimix does the trick and no side-effects.  At first there was local aching from it, but after about a month that dissipated.  I also switched to bimix which helped the aching.  Accidentally i did the trimix again (bottles next to eachother in the fridge), and no aching, so now i have plenty of "fun in a bottle" to use up!

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