Use it or lose it...really?

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Regular Member

Date Joined Nov 2005
Total Posts : 113
   Posted 12/11/2009 9:20 PM (GMT -6)   
Ok, thanks to all who responded to my "Seem to be leaking more (urine) than before.." post from the other day. Nice knowing I'm not alone, but yet there is another burning question..(I don't mean the UTI type of burning) I had my RADICAL Robotic Prostate surgery last January of 2009.

I had both my buddy catheter and another side kick,JP in for seven weeks post op. From time to time on this site, I've heard that if you don't try to acheive an erection by way of the battery-operated Pump,or using an injection like trimax, which I've heard could cause Peyronie's disease (also known as "Induratio penis plastica")

I had been taking 25 Mgs each day for four months after the surgery,then my Dr. wanted to up it to 100Mgs. because of the cost (about 12.00 each from my Hospital Pharmacy, 16.00 each at CVS,and I think 14.00 at Costco, I decided that the cost would eat me up alive,so I stopped. I took one 100mg last month, Looked at few naked women doing the nasty,to try to get me there faster,but NADA at all! I hope I am not doomed.

So, it takes longer time for some and shorter time for others to get back the erection status, but by me not using the pump,or spending a great amount of time and effort on my most extreme flaccid member, which causes a great amount of frustration after about 20 minutes not to mention my hand falling off, with no hardness, will this cause me more healing time?

Question of the day...Will I lose all ability to achieve any type of erection in the future, if I don't keep trying now? I do have orgasms, as flaccid as I am, I just miss the hardness and sensual sensation of seeing my hard erection. TMI I know, but we are all guys, and we are all human.

I did undergo a nerve-sparing least that's what the doctor told me. Thanks...later

Post Edited (unhappycramper) : 12/11/2009 7:26:07 PM (GMT-7)

Regular Member

Date Joined Sep 2009
Total Posts : 27
   Posted 12/11/2009 9:36 PM (GMT -6)   
I think that you should see a Dr specializing in ED /Penile rehabilitation....You could get a recommendation/referral from your surgeon or your  GP....You need to work on getting erection back...sort of a part time job...Magic may happen,but you  may need a fairy with a good wand.....It is worth the trouble as a professional can get you in a more positive frame of mind...and give you some homework....

Regular Member

Date Joined Oct 2009
Total Posts : 314
   Posted 12/11/2009 9:56 PM (GMT -6)   
"Looked at [a] few naked women ...." I assume you meant pictures of a few naked women. If not, please tell us how you pulled that off. Please.

Seriously, it is important to keep trying. Just enjoy the orgasm and be patient. One guy I know had to wait almost three years .... But don't torture yourself, and see an ED specialist if it's bothering you.

By the way, psychological stimuli won't work any more. The name of the game is now physical stimulation.

I stopped using the pills also - they are way too expensive, aren't they?

In the meantime, find other ways to express intimacy. I sure will if I ever get the chance!

No family history of PC.  PSA reading in 2000 was around 3.0 .  Annual PSA readings gradually rose; no one said anything to me until my PSA reached 4.0 in September 2007, at which point my internist advised me to see a urologist.   
Urologist advised a repeat PSA reading in six months = 4.0 .  Diagnosed May 2008 at age 56 as a result of 12 core biopsy.  Biopsy report by Bostwick Laboratories = Gleason 3 + 3. 
Interviewed two urologists - the one who did the biopsy and another - the latter had the biopsy slides re-examined = Gleason 3 + 3. 
Then went to M. D. Anderson Cancer Center in Houston in July 2008 and met with a urologist and a radiologist.  Biopsy slides re-examined yet again, this time by MDA's internal pathology department = Gleason 3 + 4.   
Chose da Vinci surgery over proton beam therapy; surgery performed at M. D. Anderson Cancer Center on August 15, 2008.  Post-operative pathology report = four tumors, carcinoma contained in prostate, clean (negative) margins, lymph nodes clear, seminal vesicles clear.  Gleason = 4 + 3. 
Minor temporary incontinence; current extent of ED uncertain due to lack of sexual partner; refused treatments for ED as being pointless under the circumstances. 
PSA readings: 
November 2008 = <0.1 ["undetectable"]
June 2009 = <0.1   
December 2009 = <0.1

Veteran Member

Date Joined Feb 2008
Total Posts : 1858
   Posted 12/12/2009 3:53 AM (GMT -6)   
It is important to try and keep things "inflated" occasionally just to keep them in reasonable condition and ticking over. The vacuum device does not need to be battery operated as there are many manual devices out there (some members have purchased theirs from sex aid shops) and these are far cheaper. So far as the medication is concerned I assume you are speaking of Viagra and the outrageous cost. Again many members here obtain theirs from "alldaychemist" at a cost of from 60c to $2-00 depending on the brand of the generic. They supply out of India but have a very good reputation here as far as delivery and efficacy of the product is concerned. Just because things are not working at the moment do not give up. My surgery was not nerve sparing (too much tumour) but after the passage of two years with the drugs having nil effect, blow me down if a full dose does not get me half way there now.
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01
PSA August 09 (2 year mark), <0.01
PSA December 09 <0.01

My Journey:

Worried Guy
Veteran Member

Date Joined Jul 2009
Total Posts : 3742
   Posted 12/12/2009 7:45 AM (GMT -6)   
My situation is identical except I am only at 5 months. . I can orgasm even though I am totally flaccid. (The image of Jello comes to mind.) I stopped taking the pills because I did not see anything and they cost was crazy. I am using a pump. It works for size but the instant I hit the release button the erection goes away.
Check out Paul's site.
It is for more adult type discussions not suitable for mixed company. There is a whole section where guys are discussing the merits and demerits of various pumps and procedures. Useful information but definitely TMI here.
I figure the pump gets blood into it so vessels don't atrophy. They are not expensive. $30.
DX Age 56. First routine PSA test on April 8th: 17.8. Start 2 weeks of Cipro to rule out protatitis.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
. 9/27 2 months: Still 3 pads per day.
11/14 4 months: Still 3 pads per day. 420ml/day, 91 um leak.
12/11 5 months: Still 3 pads per day. 400-450ml/day Experimenting with Nyquil.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04 undetectable.

Veteran Member

Date Joined Sep 2009
Total Posts : 664
   Posted 12/12/2009 9:48 AM (GMT -6)   
Zen9 stated "I stopped using the pills also - they are way too expensive, aren't they?"
Yes!  That is the understatement of the year. In one word, I’d call it “outrageous”!!!! Not for me, my family budget isn’t going to take a hit for “pills”. My argument with the insurance company was is that this was suggested as a short term therapy. Kind of like other drug therapy that is covered, (or at least a significant part of …I’ll pay what would be reasonable) but I had no luck. My suggested ½ tab every other day was going to be way over $500 (my part) for the prescribed 3 months. However, guess I cant really gripe to much because the insurance portion of coverage for my surgery made that a reality. Without the insurance I would have never been able to have the surgery in the first place. It’s just all real frustrating. Sorry I’ll go vent some other place

Veteran Member

Date Joined Apr 2009
Total Posts : 990
   Posted 12/12/2009 5:16 PM (GMT -6)   
You will find very strong divergence on this issue. Some hold that penile rehab is essential and others say let nature take its course. My doc is of pretty much the latter opinion. But there seems to be little research support for either side.

We of course have the case of celibate priests who leave the church and then raise large families.

I think that the thing to remember is that the most important sex organ is the brain. Whatever your choice, don't berate yourself for it. There are many ways to have fun with an erotically inclined partner -- and in spite of total ED I say that sitting next to my wife with a big grin on my face.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day

Worried Guy
Veteran Member

Date Joined Jul 2009
Total Posts : 3742
   Posted 12/12/2009 5:41 PM (GMT -6)   
I'm willing to try anything. But, doing it on a piddle pad really dampens the spirit.

Geezer: "But there seems to be little research support for either side."
I could start another poll. The results of the incontinence poll we did here were very consistent with the large studies found later. Didn't you do an ED survey?

Elite Member

Date Joined Oct 2008
Total Posts : 25393
   Posted 12/12/2009 6:27 PM (GMT -6)   
The health insurance firms should be lobbied and griped at hard for the common approach of "sex drugs" for recovering PC patients.

I understand why they won't pay for them for any recreational use, you know, the young stud that wants to be super stud, or the lifetime drunkard that cant get it up any other way.

For the kind of ED we talk about, and for the men that need the meds, it is a medical nesecssity, not a luxury. It should be a standard part of rehab for our patients. They could at least pay for what is needed for the first year to two years, then back it off after them.

For the men that the drugs would directly help, its a shame that many, are denied them ,or forced to buy them outside the USA to get them at all.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place

Veteran Member

Date Joined Jul 2009
Total Posts : 504
   Posted 12/13/2009 7:02 PM (GMT -6)   
Hi Unhappycamper,

I stopped taking the oral meds this past summer as they were not working and even generics were adding up. Also factor in the side effects and the 0% success rate.

Instead, I went with the Trimix shots, under $70 gets me 4 amazing erections a week for 2 months, 1.5 to 2 hours, guaranteed. No stress that the meds are not going to work, no drawbacks other than quickies at the mall are out of the question now
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0

Regular Member

Date Joined Dec 2008
Total Posts : 235
   Posted 12/14/2009 12:51 AM (GMT -6)   
I had given up on the pills.  Early on I tried Viagra (some effect, but nothing 'usable'), Cialis (massive headache), and Levitra (like Viagra).
Recently (about the 1 year point), I started with Levitra again.  Lo and behold, I now (usually, but frustratingly not always) get a pretty impressive response.
So, maybe try them all again periodically to see if things are coming along.
51 YO
PSA at Dx: 8.2
DaVinci RALP: 10/31/08 -- Great MD in New Haven, CT
Negative margins, no extra-capsular involvement
One nerve spared
PSA at 0 for just over a year now.

James C.
Veteran Member

Date Joined Aug 2007
Total Posts : 4463
   Posted 12/14/2009 10:31 AM (GMT -6)   
MrGimpy, switch to bimix, it doesn't require refrigeration now, so you can take it with you to the mall, for those unscheduled moments. Or maybe a little fanny pack with an ice pack for the trimix, if you are reluctant to switch.. tongue
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, Bimix .3ml PRN or Trimix .15ml PRN

Veteran Member

Date Joined Jul 2009
Total Posts : 504
   Posted 12/14/2009 1:22 PM (GMT -6)   
Hi James,

Thanks, on the "heads up" on the Bimix, The individual Trimix shots are ok for up to a week unrefrigerated, its the vial that needs to keep cold so it can last 90 days. Good tip though for the summer

Can you imagine taking a shot at the mall, how would I get out of there, I would be stuck with a 2 hr erection and no way that baby will be able to stuff back into a pair of jeans. For those of you who shoot up you know what I mean, seriously stiff like a wooden ruler (triangle shaped ones) , totally unbendable. Sooner or later a sales person is going to wonder why I am in the dressing room for 2 hours !!
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0

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