ED Question

For those of you who had ED issues and then "healed," I'm curious how the healing occurred. In other words, did you "all of the sudden" get a usable erection or was it a more gradual process of slight improvement over a longer period of time?

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Husband and father of two (current ages 4 and 6).
Age when diagnosed: 47 (current)
Biopsy showed cancer only on left side.
Pre-surgery PSA: 13.7
Pre-surgery Gleason: 4+3=7
Pre-surgery Staging: T2
CT Scan, Bone Scan, PET Scan: Clear
Robotic Surgery on May 28, 2008, at Barnes Hospital in St. Louis.
Right nerve bundle spared; left bundle removed.
Catheter for 8 days with infrequent "stress" leaking. Pad-free after five weeks.
Continuing ED: attempted Viagra, Levitra, and Cialis with no response. However, had SUCCESS in October 2008 using MUSE.
POST-SURGERY PATH REPORT:
Bad news-
Gleason: 4+3=7
Involved 10% of prostate; all quadrants involved
Extraprostatic extension at left base and apex
Extensive perineurual invasion present.
Non-neoplastic prostate shows PIN, high grade, diffuse.
T3a
However, good news-
Bladder neck, lymphvasular space, seminal vesicles, 17 examined lymph nodes, and all margins are FREE of tumor.
Four-week post-surgical PSA = 0.1
Seven-week post-surgical PSA = .01
October 2008 PSA = 0.0
Next PSA scheduled for January 2009.

Piano, your reply is exactly mine, except I am at 15 months. Amazing how similar your description is....

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James C.
Co-Moderator- Prostate Cancer Forum
Age 61
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
Present- 1 year: ED- Viagra, pump continues, no response- Trimix .10ml x 2 weekly continues
Post Surgery PSA's: 3 mts-.04, 6 mts.-.04, 9 mts.-.04, 1 Year-.02.

I does take time for those nerves to heal i experinced my first real erection after 12 months and still improving , and sometimes with some setbacks as well...but i am greatful for the progress..

be patient and keep practicing!!!

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April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response.
3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.
1 year visit on June 13 2008 woohoooo!!!

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!

Things recovered gradually for 6 months before I had usable erections without Levitra.

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Eddie

Age 55

PSA 6.7

Needle biopsy: T1c Gleason 3+4=7...2 of 10 cores

Non-Robotic laparoscopic RP on 3/4/2008

Specimen pathology: T2C organ confined with clear margins. GS lowered to 6!

100% urinary continence since cath removal on 3/11/2008

ED resolved with Levitra within 3 weeks

4/18/2008  1st PSA undetectable

7/25/2008  2nd PSA undetectable

You are right Dave it does take a lot of patience and practice :)

i had the same road blocks as you do   i am at my 18 months mark now and hoping for some more progress after that ... i can acheive 80% without any meds and close to 95% with meds  so i hope from here it is only getting better ....

did you notice a greater change after your 18 moths mark ?

Keep UP the good work  lol

Dave7 said...

It took me about 12 months to achieve something useable with viagra.

It was a very slow progression.  For weeks or months at a time I wouldn't see any progression and then I'd get a little change that kept my hopes up. 

Viagra reqiures an empty stomach.  My best results are when I haven't eaten for several hours.

Good luck.  It does take a lot of patience.

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April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response.
3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.
1 year visit on June 13 2008 woohoooo!!!

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!

Thanks for the reply Dave, d you use the brand name Viagra ? or you also order them frm All Day Chemist on  the discounted price for the generic as many on here do ???

thanks again for the nput..

GB

Dave7 said...
GBINAB-you asked if I noticed a change after the 18 month mark.

What I noticed was more spontaneity.  From about 12-18 months, I had to plan things well in advance, as far as the timing of an empty stomach, the taking of viagra and things proceeding within the next 1-2 hours.  Also, things were affected by my mental state of mind.  If I thought about whether or not I was getting an erection, I wouldn't get one. I had to focus my full attention on my wife, which is probably a good thing.

After approx. 18 months I find that as long as the viagra is taken on an empty stomach, I can usually get an erection  at any time during the next 12-18 hours.  I don't have to plan so much and things can progress more naturally.

It sounds like you are doing well.  I cannot get much of anything without meds in my system.

Best wishes to all.

 

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April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response.
3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.
1 year visit on June 13 2008 woohoooo!!!

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!

tHANKS again i figured that  that is who i use  i was wondering if they were safe to use ...

thanks again

GB

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April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response.
3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.
1 year visit on June 13 2008 woohoooo!!!

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!

Yes i think that ADC calls it  the Blue Pill

GB

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April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response. 3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!

UPDATE AS OF Dec 2008 (18 months out)

PSA  still Undetectble!!!!

No continance issues!!!!

ED Mostly  getting better  with oral meds and the right woman  = good  sex

80% without any help   and 95% with oral Meds ... 100% with  VED

hope to keep progressing and by 24 months get back to 100% potency  WooooHoo!!!

scubadave

Cialis ...... active ingredient........Tadalafil 20mg
Viagra......active ingredient........Sildenafil Citrate 100mg
Levita.......active ingredient........Vardenafil 20mg

creedthree
The perspective given by the wives on the forum are invaluable to us fellas. Thankyou.
Bill

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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)

Pugatory...

Great News that is a fabnulous recovery at that stage of your  post op... seems that damages are not   as bad as you thought ... way to go !!  keep it UP   (literaly ...lol)

Creed_tree

thank you for your input i was following your hubby progress for a while now  (through  your posts of course...) and you are right we are almost indentical ...after 18 months i feel better progress and i think any open RP experience in reality would be more like  18 to 24 months to get back to normal functioning ... i do have natural erections with the right woman and the right state of mind , at the worse case scenario, i call on the "Little Blue Friend" and enjoy sex life again ...the only worry i stil have in mund  is  my desire level is still low and not back to the High Energy and burning desires for sex as i had pre surgery, but i hope in time (i am now at 19 months post op) i will regain the burning desires for 2 or 3  times a night sex as i used to have ..

keep us postyed as your hubby journey provide an encouragment to all of us ..

thanks again

GB

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April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response. 3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!

UPDATE AS OF Dec 2008 (18 months out)

PSA  still Undetectble!!!!

No continance issues!!!!

ED Mostly  getting better  with oral meds and the right woman  = good  sex

80% without any help   and 95% with oral Meds ... 100% with  VED

hope to keep progressing and by 24 months get back to 100% potency  WooooHoo!!!

Purgatory said...
For those that didn't read about my "event" from a thread further down, I had non-nerve sparing open RP on 11/14/8. The left side was 100% removed, the right side as described as heavily scarred and damaged by my surgeon. This past weekend, started experience errections on their own. By Sunday evening, was able to have "session" with the wife. Would estimate what I had was in the 60 - 80% range of pre surgery erections. I was able to experience what might be described as a mild, distant somewhat, small orgasm.

David in SC

Dave, this makes a lot more sense as it was my understanding that you had to have intact nerve in order to have either spontaneous erections or for that matter even erections with the aid of oral meds.  In some cases a nerve is transplanted, I think from the ankle at the time of the surgery to aid in the recovery of erections.  I continue to be unable to acheive any activity either spontaneously or with oral meds, have to inject.

Scott

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Diagnosed @ 48yo 04/07

focal, low volume tumor gleason 6

RRP 07/30/07

Persistance of PSA

IMRT 11/07-01/08

Emerg, cysto obstructed bladder 01/08

Persistance of PSA

08/08 learned Dr. left significant amount of prostate

12/08 saturation biopsy 36 cores 24 having normal prostate tissue

12/08 referred whole to med malprac attorney

I had my surgery 3 weeks ago and my catheter out last week. I'm taking Levitra to try to stimulate the blood flow. I'm not getting full erections (and from reading the posts, it might not be for a while now), however I am able to self-stimulate and obtain orgaism. Once I get over the incontience issue....

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Diagnosed: November 2008: - PSA 4.5 - 3 Cores out of 12 Positive - Gleason 6 (3 + 3)

Surgery: Nerve Sparing RRP on January 6, 2009, Age 53- one night in the hospital

Catheter: Removed on January 20, 2009.

Side Effects:    Incontenance - leaking like a sieve

(as of 1/27/09)  Impotence - half-staff with Levitra

iam144 said...
I had my surgery 3 weeks ago and my catheter out last week. I'm taking Levitra to try to stimulate the blood flow. I'm not getting full erections (and from reading the posts, it might not be for a while now), however I am able to self-stimulate and obtain orgaism. Once I get over the incontience issue....

Hi 44

You are wayyyy   early in the process  .. take your time ... do your  Penile rehab , and  be VERY patient ...seems like you doing well and i am sure you will get there  before you know it   Realistic tim frame is between 6 and 24 months ...

Good Luck   an keep us posted

 

GB

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April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response. 3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!

UPDATE AS OF Dec 2008 (18 months out)

PSA  still Undetectble!!!!

No continance issues!!!!

ED Mostly  getting better  with oral meds and the right woman  = good  sex

80% without any help   and 95% with oral Meds ... 100% with  VED

hope to keep progressing and by 24 months get back to 100% potency  WooooHoo!!!