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.

I am interested in the answers too. I am nearly 9 months out from non-nerve-sparing surgery, so I can describe what it is like from a zero base.

No natural erections at all, not even nocturnal ones. Occasionally if I get up in the night, I imagine I might have a little extra thickness there, but more likely it is just wishful thinking.

I can think lustful thoughts and feel some slight movement "down there" -- and sometime non-lustful thoughts have the same effect. Just like the old days, but nothing approaching an erection. With musterbation, I can get some extra length and thickness, but again nothing approaching an erection.

Still, I live in hope. And in the meantime, injections aren't so bad.

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Age 63. Other than cancer, in good health; BMI 20

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'm at about a year out, and after months of low dose Cialis and pump use, I can now attain reasonable results with stimulation alone, although Cialis still improves things. I liked the description from another thread:

That's about where I'm at, and it took me quite a while to get there. It was certainly not "all of a sudden"! It seemed like a very gradual improvement over that year, with quite a bit of the improvement coming after 9 months. Considering your partial nerve sparing, I could see it taking a while... stay positive, and good luck!

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Diagnosed Sep 2007 Age 54 Gleason 6 (3+3)

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..

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.

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

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Eddie

I am 3 yrs post nerve sparing surgery and still have no natural erections.  I believe that for me the ED is perminant but I get very good results with trimix, so life is good.  More important is my PSA tests are still undetectable.  For those of you who have recovered from ED, congratulations.  Happy Holidays to all.

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

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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!!!!

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

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

GBINAB- I order from All Day Chemist.  I take 1/4th of a 100mg pill each day.  I've compared All Day Chemist with the brand name and the only difference I find is the cost. I highly recommend All Day Chemist.

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

thanks again

 

GB

I've looked on AlldayChemist and can't find Viagra, is there a generic brand name or am I just missing it,
Also, Is there a better med that people thinks work better?
Thanks

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Age: 51
Diagnosed with a PSA of 2.0 last winter
6 months later PSA went to 4.9
12 biopsies revealed a Gleason score of 3 + 3 in 2 out of 12 slices
Robotic Da vinci surgery on Dec. 10th of 2008
Catheter for 9 days, in hospital for 20 hours - no pain - was walking within 16 hours
Using one pad a day, none needed if I watch my fluid consumption
Not much luck down below but seeing small improvements weekly but not enough for intercourse, tried cialis and now the blue pill.
Went back to work after 6 weeks on Jan. 22nd 2009, did okay but noticed a little more leaking - I'm a PE teacher so have to be on my feet.
Next doctors appointment in March

Yes i think that ADC calls it  the Blue Pill

My husband's recovery is almost identical to GBINAB's. No noticeable recovery until 8 months post surgery (just lots of tingling and signs of recovery), then good response with Levitra improving from 8-10 months. At 12 months post surgery, improvements overall steadily with meds,  and at about 16 months return of spontaneous function steadily improving without meds now. Some disappointments from time to time still,  but recent return of spontaneous E's morning and night. Now 3 months off 2 years,  and improving so well that we forgot to take oral meds on recent 3 weeks holiday (!),  and had no problems that we could not deal with. My husband considers himself very fortunate, and he seems to think that the 2 year recovery mark for ED healing is a reality for him personally, but he was lucky that both nerves could be spared. The slow process of healing has been disheartening at times, particularly in the first 12 months,  but he saw a men's health doctor at 4 months when he was quite worried and decided to change oral meds and dosage and this worked. At this time we watched a video and considered injections.  It was his choice however,  not to use injections as he did not want to at the time. This may have been different if recovery had not been forthcoming at about 10 months. After 6 months he gave up the pump as did not work well for him but continued the stimulation and nerve Physio in his own way. I do not usually contribute to these sort of posts as a wife, but as an important topic and the fact that hubby does not use a computer, thought this may help to share given that he is similar age to you. Hope you do not mind the contribution. In answer to your question however,  for my hubby it was slow and sleady healing, but sudden and noticeable improvements noticed at about 10 months and 18 months post surgery.

cheers and all the very best to you Kark60.

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Creed_three

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)

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.

This has been accomplished with no pumps, no ED pills, or really anything but feelings of normal sexual interest and desire returing to me after being on a catheter for over 2 months.

With any kind of sexula provacation with my wife, even mild, the wee fellow wants to respond. My situation doesnt make any sense even to me, with all I have learned in the past 6 months concerning PCa.

I will be disucssing this with my dr. in less then 2 weeks, in the meanwhile, I am thankful for what is happening. I hope it doesnt go away, and perhaps will improve over time. I am in no hurry, have lots of patience.

David in SC

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Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3

Pugatory...

GB, the original accessment of damage was based on my own surgeons report, that is why I am so curious as to what he thinks. I don't know if he's a brilliant surgeon or I am just plain lucky, or perhaps a little of both.

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Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3

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Diagnosed @ 48yo 04/07

scott, there was no nerves transplanted in my case, when I came out of surgery, he told my wife that he removed by nerve bundles, but later, said the right side was left in some type of damaged state, again due to some of the difficulties he had in the operation.

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Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3

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)

Hello and welcome, iam. sounds like at least you have activity going there on the ED pretty early on. Incontinence part, in the same club, but slowly getting better each day. Never fast enough for me.

David in SC

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Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3

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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!!!!