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ED -- Maybe time is the best medicine?

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Posted 5/26/2008 2:13 PM (GMT 0)
Just wanted to pass on this personal experience....

I had a non-nervesparing prostectomy 2 years ago....followed by 2 months of radiation 18 months ago.  I've pretty much resigned myself to long term ED....  I've got the pump, which kind of works but I don't like... I've tired cialis which has, in the past, not done anything for me... I've done injections which work OK....

BUT... in the past few weeks I've noticed some better response using nothing... Just lately I was able to achieve an "erection adequate for intercouse" .... certainly not what I was pre-cancer, but an amazing progression given my history.

A lot of the posters on this board struggle with ED ---- I'd add to the already great advice shared on this forum--- GIVE IT TIME --- and don't give up!

Posted 5/26/2008 3:18 PM (GMT 0)
Very encouraging news!
Posted 5/26/2008 4:26 PM (GMT 0)
Wow Sterd,

You are one for the books! Your case is not only rare, it's less than 1%, nearly unheard of in the medical books. Congratulations. How great is that? :-)

Swim

Posted 5/26/2008 10:44 PM (GMT 0)

Sterd -- I'm mightily impressed, especially in view of your double-whammy -- surgery and radiation. The statistics I have seen for impotence from non-nerve sparing surgery alone (yours and mine) range from 66% to 100%.

I have been told that Viagra and Cialis don't work for the non-nerve spared ....

[Deleted to comply with forum rules]


Posted 5/27/2008 3:28 AM (GMT 0)
I kind of feel like a freak of nature......

Piano, I think use it or lose it makes a lot of sense.... I used the pump a lot after surgery and before radiation/ht. Once I got into that treatment, my "rehabilitation" activities pretty much stopped.... I've only tried injections twice (worked TOO well once, not well enopugh second time)....

Its only been just recently that I've noticed some natural firmness --- . In the past couple of weeks I've notived steady improvement to where I could actually "perform"...I'd say somewhere in the 60-70% range of where I was pre-surgery....which is miraculous....

When my libido kicked back on (about 9 moths after my last Zolodex shot), I started on a program of regular stimulation --- both with spouse and without (what a thing to write about one's self!)....

I'm going to talk to my uro about getting back on cialis to see if we can improve from here.....I'll be sure to post any new findings .....
Posted 5/27/2008 4:03 AM (GMT 0)
Please do post any new findings.

I'm sure all of us here with ED can take a lot of heart from your experience. Nerves clearly can grow back, and it's amazing how they do it. I read somewhere that the growth is about 1/8 inch per month.

So it would figure that nothing much will happen for some time while that process is occurring. Then a relative rush as the first nerves break through and make contact. Let's hope you have some more making contact soon -- and keep giving them all the encouragement you can :-)
Posted 5/27/2008 10:42 AM (GMT 0)
Thanks for a very encouraging post, and gongratulations !!!

Randy
Posted 5/28/2008 2:22 PM (GMT 0)

I am glad someone started this thread, so I will add my experience to encourage others to not give up hope.

After my RRP surgery on Jan. 5, 2007, I have pretty much gone thru everything everyone else has written about.  My surgeon told me at least 3 different times I could never have normal erections again after removing both nerve bundles.  I used a VED for about a month with nothing to show for it, was ready to give up on it  and then all of a sudden, I got an erection that was usuable.  I then tried injections, PGE1 and Trimix 4 times and they gave me such pain I decided it was not worth it over the VED.  From reading on this forum about the use of bimix to relieve the painful injections, I tried it and low and behold it worked.  Thank you all for discussing this openly on this forum.  I asked my urologist for Bimix, he normally would not have done this for his patients.  He is a surgeon and not an expert on injection drugs.  On May 12th, I was kind of messing around in the shower with my wife and low and behold, I got an erection that was useable without the aid of a VED or bimix.  May 12th will be on our calendar as a very special day to celebrate the rebirth of "Willie".  I have tried Viagra and Levetra several times since then and it is better than I could ever have hoped for.  Alldaychemist sent me some samples after I inquired about Cialis (they cannot sell this in the USA).  To sum all this up, don't give up hope.  It took me 17 months.  My wife has been most supportive,  helpful and active in my many months of doing "penile exercises".  She has keep up my spirits over this time and this has brought us closer than ever.  I, for one, hope words like M***bate can be spoken openly and conversations can be truthful and honest without offending anyone on this forum.  IF IT WERE NOT FOR WHAT I CAN READ ON THIS FORUM, I WOULD HAVE PROBABLY GIVEN UP AND STILL BE ONLY USING A VED.


Posted 5/29/2008 9:07 AM (GMT 0)
Jerry: as another non-nerve-spared, I am delighted to hear of your recovery. Well done and thank you for sharing.

Posted 5/31/2008 1:10 AM (GMT 0)
Thank you Sterd82 and Jerry for confirming what the Chief Resident told us on his rounds the day after surgery: Don't get discouraged, it is often simply a matter of time and could be 18 months. I was wondering if he was just being vaguely optimistic for the patient, or if it was really true. Thanks for being willing to share your case with us. I can't say it often enough; the personal, intimate experiences offered by men here with the courage and caring to discuss sensitve matters makes this site the best resource. Val's spouse
Posted 5/31/2008 2:47 PM (GMT 0)
Hey Sterd,

Time truly heals. The problem is it takes lots of patience. After a lifetime (almost) of being ready to go on a moments notice, spending months trying to get it back can be depressing. Just don't ever give up. Even old guys like me can still get it on after PCa.

"Hang" in there buddy...

Jim
Posted 5/31/2008 3:31 PM (GMT 0)
What great news! I haven't seen very many people have posts like this after both treatments. My father will be pleased to hear your story. Thanks for sharing! It has been a big deal for my dad over these past months.
Posted 6/8/2008 6:05 PM (GMT 0)
i am at the 4 week mark and may have had a slight erection friday night but it didn't last long at all. the doctor hasn't prescribed any ed meds for me yet. i am wanting to work the incontinence issue first. it is going a lot better these days. i will be talking to the doctor next week. from these blogs, it appears insurance isn't covering much of these drug costs.
Posted 6/8/2008 11:42 PM (GMT 0)
This topic is an important one.... especially the notion that we need to give "it" time.

My urologist/surgeon told me that she has many patients where good progress on ED doesn't come until 12-18 months after RP.  She told me to be patient and I have been.

I really believe that those who regain normal response soon after surgery are the exception rather than the rule.

And, rob2, my insurance does cover a big portion of the ED drug price tag.  My surgeon sent a nice letter explaining why I needed the drugs for rehab after LRP and that really helped to deem the drugs medically necessary.

Best regards,

 

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