As good as it gets ?

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sfigato
Regular Member


Date Joined Dec 2010
Total Posts : 144
   Posted 2/6/2011 6:46 AM (GMT -6)   
I am now almost 2 months post-op

from a recovery standpoint most things are going well.

One outstanding issue is ED.

In my case, I had the "nerve-sparing" open RP.

I can achieve orgasm, and it feels great, but there seems to be almost a short circuit between brain and penis.

visual stim has little effect, physical stim has some effect. But it's almost as if pre-op healthy sexual function was more of a feedback loop, the more you stimulate , the bigger you get, the more it feels good, the more you stimulate until BAM.

now post op, that loop is broken, physical stimulation has little immediate effect, then when things start to happen, physically the penis seems at about 5% engorgement level vs pre-op. definitely more than nothing, but much less that full staff. Definitely not "stuffable".

I've probably asked a similar question before , apologies.

I'm not ready for drugs, injections, rings etc yet. I view these as acceptance that things will not improve, and I haven't surrendered yet.

so - on the spectrum of everyone's personal results, where am I ? is there further improvement ? is it likely that things will get back to some sort of post-op normal (i.e. sex with my partner, without medical intervention)

finally - what the heck did they do to me to mess me up like this ? are all my original blood vessels to the penis still in place, is this a nerve thing or physically is the plumbing messed up ?
Age at diagnosis 48
Gleason 3+3
Pre-Surgery PSA 5.1, 5.7
Cores Positive: 10 of 12 up to 40%
Treatment: open Surgery Dec 2010

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 2/6/2011 6:50 AM (GMT -6)   
Everyone is different..But I'd say you're several months away from needing to be concerned about ED.
 
Have you been using a pump and or pills to help in the recovery process? Getting blood to flow through mr pee wee is important.

RCS
Veteran Member


Date Joined Dec 2009
Total Posts : 1247
   Posted 2/6/2011 8:01 AM (GMT -6)   
http://www.mskcc.org/mskcc/html/94910.calm
You might want to take a look at the lectures by Dr.Mural on this subject. Link attached above.
PSA 2007 - 2.8; 11/24/2008 - 7.6; PCa Dx 2/11/09; age at Dx 62; RLP 4/20/09

Biopsy - Invasive moderately differentiated prostatic andenocarconoma; G 3+3=6; PT2C; No evidence of Seminal Vesicle or Extraprostatic Involvement; Margins clear; Tumor identified in sections from prostatic apex. 70 gram prostate. Continent after removal of cath.

ED - Trimix works well; levitra @ 90%
PSA - 7/31/09 <0.06; 12/1/09 <0.06; 3/29/10 <0.06; 8/4/10 <0.06

daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 2/6/2011 8:03 AM (GMT -6)   
It was explained to me that keeping blood flowing to the member was important to the recovery. My Uro perscribed 5mg Cialis to aid in keeping flow going. If you aren't using meds yet you may want to think about talking to your Dr about getting some to help. I tried all 3 with 100mg Viagra providing the most results (and side effects) early on, leading to today when 10mg Levitra pretty much does it with a minimal stuffy nose. I also "exercised" it almost every day, figured that would be good physical therapy and help remind it what it was there for.

I didn't try a pump but a mild constriction ring helped and still does.

Everyone recovers at a different rate, IMO the fact that you're showing a bit of stirring this early (it really is, it just seems like a long time). Some folks have little or no issues at all, others recover function slowly, it just depends on what was damaged during surgery, what you had before surgery and how fast your body can repair the wiring/blood supply.

Best of luck to you.
Dave in Durango CO
07-06 PSA 2.5
01-08 PSA 5.5
09-09 PSA 6.5
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5
03-01-10 Age 55 RRP in Durango CO by Dr Sejal Quale and Dr Shandra Wilson
03-16-10 Path' G-8 (4+4+5) Bilateral involving 21% of left lobe, 3% of right lobe, SVI, Focal positive margin, pT3b NO MX

All PSA as of 1-25-11 <0.04

profman
Regular Member


Date Joined Jan 2010
Total Posts : 55
   Posted 2/6/2011 9:22 AM (GMT -6)   
As said before, everyone recovers at a different rate. After the catheter came out the uro started me on 50 mg Viagra every other day, and recommended I use the pump once a day, 5 days a week, just to keep things active. Now, 13 months after surgery, I still have no response to visual or mental stimuli, but physical stimulation, plus 50 mg Viagra, works in terms of stuffability. Still not like before, but it has been a slow and steady progress from my nerve sparing robotic surgery. I did stop the pump after about 8 months, but still use the viagra every other day.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/6/2011 10:43 AM (GMT -6)   
Being only 2 months out of surgery, I think you are expecting way too much too soon. Your body has been through hell and back. Even with your nerve sparing surgery, still doesn't mean instant recovery in that area. Good luck as you continue to heal.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6946
   Posted 2/6/2011 11:52 AM (GMT -6)   
My uro prescribed 5 mg. daily Cialis just for blood flow. My DaVinci surgery did not include any attempted nerve sparing due to the biopsy results, but the uro believes that there is no harm in keeping the blood flowing just in case. Not a matter of getting dependent on pills as much as keeping it from falling off.

Flytyer2
Regular Member


Date Joined Dec 2010
Total Posts : 33
   Posted 2/6/2011 4:09 PM (GMT -6)   
Thanks for your post as I'm in about the same situation, but several years older. Tried 20 mg of Cialis and had horrible backaches for 8 days, and Alleve wouldn't even phase it; had to take pain killers every four hours. Was wondering if a 5 mg dose would eliminate or minimize the side effects? Have ordered the other two ED drugs (generics) from India pharmacy to try as well. Please keep us posted on your progress, because it certainly helps some of us others.
Age 61
PSA: 12/09 7.3 (Proscar) -- 7/10 9.06 (Proscar)
--------------------------------------------------
Biopsy 9/13/2010
Diagnosed 9/20/2010
One of 12 cores positive: <5%

RRP at Mayo Clinic, Rochester, MN 12/15/2010
Gleason 3 + 4 with tertiary grade 5
Tumor confined to the prostate
Surgical marginins negative

Catheter removed at Mayo 01/03/2011
Pad free with min leakage 01/18/2011

lennybob
Regular Member


Date Joined Dec 2010
Total Posts : 99
   Posted 2/6/2011 8:04 PM (GMT -6)   

It is still early in your healing process. If you are leak free & pad free at this point you are doing way better than most. It typically takes time for Mr. Happy to be happy again. The hardest thing for me to accept about ED is that there is absolutely nothing I can do about it. You have to get past all the macho stuff and realize that this is merely a side effect from your surgery that can heal in time. Everyone is different, some guys seem to jump right back in the game and some take longer. I wish you well in your healing process. You have found a good place for information, as well as support.

Lynn


Age 53...51 when diagnosed.
February/09 PSA 11...GP discoverd during yearly physical...referred to Urologist
Biopsy found cancer, Gleason score of 6.
July 2009...Nerve-Sparing open radical prostatectomy.
Doing very well...only issue is ED and that is getting better.

NY-Sooner
Regular Member


Date Joined Sep 2009
Total Posts : 463
   Posted 2/7/2011 8:21 AM (GMT -6)   
I think nerves take time to heal, and in my case about two plus years.  I am currently 3 1/2 yrs post op and I am almost back to pre surgery sexual arousal condition. 
 
I was very very lucky in that I was able to get a 100% rock solid erection within days of the catheter being removed, and withou the aid of drugs, BUT, only with a lot of manual stimulation.  Visual stimulation did nothing for me right after my surgery.  I could look at naked women 24/7 and felt absolutely nothing, not even a tingle.  But as soon as some manual stimulation was applied,  the erection came quick and hard.  The second the manual stimuli stopped, so did the erection.
 
This went on for about two yrs then in the about the second year post op, I started noticing that I was waking up every morning with a rock solid morning erection like I use to prior to surgery.  So solid was the erection, I could hang a towel over it. The only problem is that within a minuit of getting up, the erection fades if no manual stimuli is applied.
 
Now at 3 1/2 yrs post op, I can actually get about 25% erections with just visual and mental stimulation. Yes, now looking at a naked women and thinking sexual thoughts, I can actually feel tingling in the penis like it is trying to become erect.  I still need the manual stimuli go get the full erection, but now not as much as before.
 
So I really believe that nerves take time to heal, so don't loose hope.
 
 
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