Phases of penile rehabilitation

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notsostiff
Regular Member


Date Joined Apr 2011
Total Posts : 77
   Posted 4/22/2011 12:32 PM (GMT -6)   
I am part way through my rehab and was just wondering if people would share how their rehab went. I had my Da Vinci prostatectomy on 16 Dec 2010. I know that it can take 1-2 years for a full recovery and after 4 months I am still being patient. However, I am interested in the phases of recovery that people have gone through. I am taking Cialis and am able to have partial erections with stimulation. These are now (after 4 months) starting to get a bit fuller but still well short of good enough for penetration. Is the progress very gradual for everyone or are there step changes along the way? I have even had a couple of nocturnal partial erections which have been encouraging.

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/22/2011 3:21 PM (GMT -6)   
I've seen many testimonials on this and the trend seems to be gradual recovery within a 2 year period. Some faster than others. There seems to be some who also never seem to get back what they would accept. You're also only on pills, many use pumps and/or other substances. I don't know anything about those but they seem to work well for many.

My best advice is to relax, continue taking the meds and "training" it on a daily basis. The more one thinks abut it the more one is bound to encounter issues that may not even be related to the nerves being damaged.
40 years old - Diagnosed at 40
Robotic Surgery Mount Sinai with Dr. Samadi Jan, 2011
complete urinary control and good erections with and without meds
Prostate was small, 34 grams.
Final Gleason score 7 (3+4)
Less than 5% of slides involved tumor
Tumor measured 5 mm in greatest dimension and was located in the right lobe near the apex.
Tumor was confined to prostate.
The apical, basal, pseudocapsular and soft tissue resection margins were free of tumor.
Seminal vesicles were free of tumor.
Right pelvic node - benign fibroadiopse tissue. no lymph node is identified.
Left pelvic node - one small lymph node, negative for tumor (0/1)

AJCC stage: pT2 NO MX

Radical
Veteran Member


Date Joined Mar 2009
Total Posts : 739
   Posted 4/22/2011 3:30 PM (GMT -6)   
Mine came back very slowly, using only meds over about 12 months, never regained 100% like pre surgery. Probably got about 90%, which is enough to do the job, and I am certainly not complaining.
Kev 53yrs [Gold Coast Qld, Australia]
PSA 4 Gleason 7 [3+4=7]
RP 24/12/08 Dr Philip Stricker [Sydney]
Upgrade Gleason Score 7.6 [4+3=7]
Stage 2 Margin status- Focal Involvement
ED- okay with Meds.
PSA at 2 yrs, no change remains 0.03
"Every-day in Every-way I Get Better"

Rolerbe
Regular Member


Date Joined Dec 2008
Total Posts : 235
   Posted 4/22/2011 3:35 PM (GMT -6)   
Hello and welcome Notso.
 
First of all, hang in there, you've got lots of runway left.
 
Summary of just one man's journey.  Your mileage may vary as results seem to be all over the place.
 
I got some mild, partial results from Viagra a couple of months after my RALP, but nothing too useful.
Tried both Levitra and Cialis in the 3rd month.  Nothing from Levitra, wicked headache from Cialis -- so much so, I've only tried it once more, at maybe the 6 month point.  Took a couple aspirin that time with the Cialis which helped a lot -- only an unpleasant head and neck ache.
 
Kept up with the viagra about 2-3 times per week, but with slowly less and less results over the next 9 months or so.  Got divorced during this time, so who knows what was mechanical and what was mental.
 
about 15 months out, I tried Levitra again -- Big response.  almost like a teen again!  Results after that have been more modest, but fully 'useable'.  I've added an Impo-aid ring to the process and my girlfriend of almost a year has had no complaints.
 
Lately I've gotten usable erections on occasion without the Levitra or the ring, but better and far more reliable with than without.  The ring also helps prevent the slight 'leakage' I sometimes get at the moment.  There was a mental training period involved in that -- used to be a gusher, now I can usually control it to nothing, but the ring is a big help with both that and a weird and annoying tendency to get softer as I get more excited with penetration.
 
Net net, it took me the full two years to be (almost) fully functional again.  Having an understanding partner is a BIG  help, particularly when the results occasionally fall flat (pun intended).
 
Levitra may or may not work for you, and you should try each of the drugs at least a couple of times over the course of the next couple of years as things change.  Levitra really, really needs to be taken on an empty stomach or (at least for me) it doesn't work.  But, I can take it about an hour to 1.5 hours before going out to dinner with wine, then still have a good time later in the evening.
 
Others will report different results, but give it time and good things may come back to life!
 
Best wishes!
 
 
age 52
RALP 10/08
One nerve spared
Gleason 7 - T1c
Pre op PSA 8.2 -- first PSA ever taken at age 50 physical
Most recent PSA 0.02 (12/10)

RCS
Veteran Member


Date Joined Dec 2009
Total Posts : 1245
   Posted 4/23/2011 7:50 AM (GMT -6)   
I followed a similar path as "notsostiff". 
 
I think your young age will help.  It seems the younger you are the better your ED recovery after RP.
 
Recently I started on Lipitor.  One of its side effects seems to be increased ED.  Sure enough I went from about 90% with Levitra (20mg) to about 50%.  Thinking of discussing a switch to a non-statin (niacin) with the cardiologist ... or maybe, just continue with Trimix.
 
Anyhow, if guys are on Lipitor and having ED problems, read the small print/side effects concerning Lipitor.
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 - <0.1, 1/17/11

Arch
Regular Member


Date Joined Jun 2010
Total Posts : 192
   Posted 4/23/2011 9:38 AM (GMT -6)   
Notsostiff...like the name
 
I'm 10 1/2 months out from open surgery. At the 6 week post surgery stage I had basically nothing. about 2 months out I had a slight lopsided swelling with stimulation from my wife in the shower. At this point I got a pump and used it with success for penetration for a couple of months. I began introducing generic Vaigara at about 3-4 months and disposed with the pump, it wasn't as firm as prior to surgery but did get the job done...sometimes better than others. In Dec (surgery in May)I decided I was getting enough reaction without Viagara so I left the pills behind.
 
It gets better all the time, currently I use no drugs or mechanics but I need more stimulation than before. I'm finally at the point where if I look at my wife nude I get a rise, this is a recent development. Occasionally I'm as hard as prior but usually a bit less. Its still improving, there are times its not as firm as desired but always up to the task.
 
Its a slow progression and I get excited about every new stage I progress through. I still leak a light pad a day.
 
hope this helps...good luck with your rehab
 
r
age 56
PSA 5.5
Biopsy, both lobes PCa
Gleason 3/4=7
open RP May 18, 2010
Pathology: 15% involved, lymph nodes and v. d. clear, margins clear
June 3-10 10-12 pads/day
2 months 8 pads/day
Aug 1, 2010 5-6 pads/day
Aug 20, 2010 3-5 pads per day
Aug 16, 3 month PSA: undetectable
Sept 22, 2 pads a day
Oct 12, PSA 0.03
Dec 1.5 pads a day
ED OK with no drugs Dec 2010

november29
New Member


Date Joined Dec 2010
Total Posts : 6
   Posted 4/23/2011 2:27 PM (GMT -6)   
notsostiff, It has been almost 5 months since my DaVinci surgery. I used a month worth of samples of 2.5 mg cialis about 2-3 weeks after surgery and noticed no results. I have tried the 250 mcg muse appox. 4 times after surgery with very little results, some burning and a partial erection maybe 2 of those times. I have 2 samples of 500 mcg muse to try but have not yet. I have been averaging about 4-5 times a week with the pump for preservation purposes. I have yet to try the rings that came with the manual pump, chose to used the wide postal type rubber bands (that I read about from someone's suggestion on this site) wrapped around the tube 3 times help the erection better than two times wrapped. I was happy to find there was not much pain from the rubber bands. With the pump and the rubber bands intercourse had been possible. I don't have any results yet with stimulation.

I still have some leakage but not too bad, I keep a rolled up wad of toilet paper in front of the pad that I change through the day as needed.

I sometimes feel some discomfort at the incision area near my belly button, which was the largest incision. I have resumed all activity now and do not feel much pain from overdoing.

I have some pain, during orgasm that seems tip and I would guess is in the urethra itself but not sure. I would say the pain and sensitivity has lessened.

My 3 months PSA was -0.01, and my doctor said it was still early regarding the ED.

I am encourage reading others experiences that maybe there is still hope for me regarding ED.


_____

November29
age 55
August 30, 2010: 1 of 12 cores positive - gleason 3-4=7
November 29, 2010: DaVinci Robotic
3 months PSA test 0.01

notsostiff
Regular Member


Date Joined Apr 2011
Total Posts : 77
   Posted 4/23/2011 3:22 PM (GMT -6)   
Davidg: I agree with the need for 'training' which I do several times a day. I find that this helps me stay focused on rehab rather than just ignore the problem and wait for improvement. Also I am convinced that it is actually making a difference, albeit small incremental changes. I find that the smallest improvement, when it happens, is a big encouragement.

ED was my biggest fear before surgery but I am finding that I can stay intimate with my wife and orgasm with oral every time and so that is helping me stay patient while a full recovery takes its time.

I see my consultant again in 3 weeks when I am hoping he will prescribe a pump.

____________________________________________________________________________________
Age 52
Bi-lateral nerve sparing but some nerves removed as I was stage T2C.
Some Gleeson 7
PSA 7.25 before surgey
PSA <0.05 6 weeks after surgery

IKE-D
Regular Member


Date Joined Jun 2009
Total Posts : 77
   Posted Yesterday 7:43 AM (GMT -6)   
I will be 2 years out 5/29. The journey has been smooth so far. I have done great without medications. Initial experiment with viagra was so bad I quit with a few pills left! Able to get usable erections from the 4th month post surgery. Training using very non conventional methods that I wont disclose (today being easter!). What I notice lately is that sometimes I have 100% and sometimes not. Still trying to figure out what I do right to get the 100%! I am also getting sponteneous capabilities back.....Getting more confident by the day...

Hang in the guys, it's a gradual process!
>Age 41 (At Dx-July 05) -Psa during annual physical went from previous 2.8 to 3
>Biopsy by 'primary' Urol Aug 05 - Gleason 6 low grade. 2nd opinion at  Hopkins confirmed Dx
>Chose Active Surv (AS)- modified diet etc.
>Around Oct 07 Psa moved up to 5.5. I decide to treat at Hopkins. Not sure what kind yet. My doctor decided on re-biopsy first.
>2nd Biopsy Dec 07 at Hopkins was NEGATIVE for Pca! Nothing found in 14 cores!
>'Primary' Urologist baffled. Planned a saturated biopsy (22 cores) to settle issue once and for all. I wasn't going to do 22 cores wide awake!
>July 07 - Did MRI just for comfort. Nothing significant found. No spread. I'd live! Still in AS mode.
>July 08 - Saturated Biopsy performed. Cancer confirmed again (of course, you took 22 cores)! Same Gleason score, same grade, similar numbers but Urol says treat very soon! I am thinking not so fast - numbers are same and you told me it means not aggressive! In any case I agreed with Urol that I will go the way of the Seeds. I research seeds more and I don't like it.
>July 08 - Dec 08 I re-lapse back into AS mode but seriously researching/considering treatment options beside surgery - went on to Mass Gen and Georgetown to explore proton therapy and Cyberknife respectively. Anything but Surgery! Both experts who are about my age were unanimous in strongly declaring they will chose surgery 'if they were me'. In addition, I learn that if either if these radiation methods (and seeds too!)  failed, no backup plan (or will be complicated)! I got the message!
>Jan 09. Went back to see my doc at Hopkins. I decide to put my fate in the hands  of the 'Da Vinci Robot' then!
> May 09. Had surgery. some Pain and discomfort but normal. Pathology all clear. Gleason 6 as before. Feeling very lucky. I gambled (based on my numbers and got 4 more years!) on the slow nature of the cancer and took my time. Very happy I finally did it. Hoping for a great recovery of all 'key' functions. Great wife and family helping out.
> Sept 09 - 3month PSA - Undetectable!
> June 10 - 1year PSA Undetectable!

jacknoon
Regular Member


Date Joined Sep 2009
Total Posts : 27
   Posted Yesterday 5:06 PM (GMT -6)   
   Two steps foward and one step back....I am just past two year mark and have gained 80%..of the aspects of penis /sex.health....Things that I have found usefull include...1..more is not better with the ed drugs,,2 the qualityand quanity of the stimulation is more important,,3,,Keep your lifestyle in check...good sleep,only A drink,NO MORE...Lots of vegs and fruit....Have used the pump in the first year and use rings now most of the time....Keep positive AND DONT FEEL SORRY FOR YOURSELF.......Keep pluging away...

notsostiff
Regular Member


Date Joined Apr 2011
Total Posts : 77
   Posted Yesterday 5:17 PM (GMT -6)   
Thanks for the advice and encouragement jacknoon. Its a new journey and so it helps to have people like you who are further along the road passing on some advice.

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted Yesterday 5:38 PM (GMT -6)   
I think Jackmoon is on to something vis-a-vis his comment about lifestyle. Stress and fatigue and not eating properly are definitely connected to the results of rehab of our "thing" with or without meds.
40 years old - Diagnosed at 40
Robotic Surgery Mount Sinai with Dr. Samadi Jan, 2011
complete urinary control and good erections with and without meds
Prostate was small, 34 grams.
Final Gleason score 7 (3+4)
Less than 5% of slides involved tumor
Tumor measured 5 mm in greatest dimension and was located in the right lobe near the apex.
Tumor was confined to prostate.
The apical, basal, pseudocapsular and soft tissue resection margins were free of tumor.
Seminal vesicles were free of tumor.
Right pelvic node - benign fibroadiopse tissue. no lymph node is identified.
Left pelvic node - one small lymph node, negative for tumor (0/1)

AJCC stage: pT2 NO MX

Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted Yesterday 6:35 PM (GMT -6)   
Notso ...

+2 years post surgery here. Nothing much positive to report in all that time.
Nocturnals are the only thing that seems to be progressing somewhat.
Way back in September 2010 I did have my very first absolute sure sustained nocturnal erection.
Then it just went back to sleep for all the months since, but seems to be activating some
now again -- possibly because I have started up Trimix shots in the last month plus. Some say that does
tend to kickstart dormant members. For all the 2 years have been using a pump daily and also doing one of the
Big Three ed drugs almost daily -- sometimes MUSE also. Coulda saved like 700 dollars by just giving up on those pills -- oh well -- I am stubborn and persistent.

Also I did have a 100+ gram prostate at time of removal and we've had anecdotal evidence here that the larger the prostate the less likely to recover abilities (or at least the longer it takes) -- maybe because they tend to be tougher to operate on while not damaging the nerves.

Will see what this year brings, but Trimix is doing a nice job in the mean time.

J
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