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Erectile Dysfunction Success Stories

vellani_b
Posts: 1
Joined: May 2017

Everyone who posts on this, and other, forums seems pretty disappointed by the recovery of erectile function. I am five weeks post RRP and the surgeon (Patel) said useable erections would return in time. I am 43 and had good nerve sparing and he said they have gotten pretty good at predicting ED outcomes. I asked if that meant 100% of what I had before surgery and he said some guys do not recover 100% but I should recover at least good useable, functioning erections in a few months.

My question is are there no good success stories or do those guys who recover their erectile function satisfactorily just stop visiting the site?

Any encouraging success stories would be much appreciated. Also want to ask about erectile dysfunction drugs. Is Viagra safe? I read here eddrugs2017.com about searious side effects of ED drugs like sildenafil.

Thank you!

Clevelandguy
Posts: 470
Joined: Jun 2015

Hi,

Five weeks out is just a small step toward recovering your ability to have a usable irrection in my opinion.  Every case will vary but it took me about a year and a half to have a non Viagra irrection.  You should be taking some kind of blood improvement drug(Cilais, Viagra, ect).  The mian idea is to get the blood flowing in the groin area any way possible, this will help with the healing of the damaged nerves & tissue.  I am not saying that it can't return in a few months, that's possible.  The only encouragement I can offer is to get the blood flowing in the groin area.  If you do nothing it will greatly reduce your recovery in my opinion. If you had a nerve sparing surgery and your doctor was a good one the irections will come back over time.

Dave 3+4

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3327
Joined: May 2012

vellani,

No two guys here are the same. Logically, people are more likely to remain in contact with a cancer Board if they have problems, rather than if they don't. This is as true of ED as it is of per se malignancy issues.  Some men just desire to stay informed, and some just see it as a place of friendship.

There is no "average" ED period post RP, but some generalities from what I have read here, read in books, and experienced myself.  First, every man will have some imparment post-surgery.  I have read one guy here who claimed he did not, that he was having spontaneous sex within less than a month after surgery, but that is so astronomically uncommon as to be irrelevant when a patient is realistically considering the future.  Most guys, even on the extremely fast end of the recovery spectrum, have significant imparement and numbness for at least a few monnths.

What Cleveland said, my surgeon, who has done over 1,000 DaVincis by now, told me. You should be on Cialias within a few weeks after surgery for blood flow purposes: it usually will not give an erection, but will prevent/lessen vascular tissue damage-atrophy.  He recommended vacuum pump use also from shortly after healing.

My doctor also recommended and perscribed for me Trimix, an injection shot that nearly always causes an erection within 15 minutes after injection, even in men with total ED.  I started using Trimix about 6 weeks after surgery (I can't remember now how long after surgery now, 2.5 years later) and response was immediate.  The first shot is in the doctor's office, and is a training session: either the doc or an RN has to train the patient and his wife/partner on how to administer the injection.  Injections can only be given every other day (not every day), and therefore two days later at home we injected it and had good sex then, as I said, within about six weeks post op.  Like Cialias, this feeds-assists the vascular tissue.  Many men report a little pain from the engorgement the first few times, but usually not serious pain. The needle itself caused me no pain at all, it is tiny, and the RN told me it is similiar to "a diabetic's shot," although I am unfamiliar.

For me, Cialias and Trimix did not allow spontaneous erections until several months later, but they were therapudic of the vascular tissue, and did allow decent sex.  I do not see many men write regarding Trimix here, not sure why, but you might want to ask your surgeon about it.  As I said, it gives erection even to men who have total ED, reportedly 85% or more of the time.  I am unaware of any form of danger from it.

We used Trimix only a few months, and then sex with just Cialias was possible, so I am guessing that we were having sex with Cialias only (Trimix no longer necessary) at about 6 or 7 months.  I was 59 years at that time (61 today).   Sex without Cialias was possible by one year, but Cialias remained helpful thereafter.

Trimix is not expensive, Cialias is however.  I have neer used Viagria.

My timeline was not uncommon: better than some, worse than others. Some men have very rapid recoverly, some few men, either because of age or the inability of the surgeon to do erectile nerve sparing, remain impotent for life.

We have a guy here who writes fairly regularly who was dispairing of his ED at about the 1 year point post-op. Then one day (in the last few weeks) he wrote in, and described good sex following the use of Trimix. He sounded like it revolutionized his life.  I don't feel free to give his name, but a little looking around will find his posts.   Jason above mentions diet. Eat healthy, and remember that alcohol and some meds are erection-killers, even for men who have never had surgery.

At 43, you are a LOT younger than most of the guys here, but I also usually mention that most of us are no longer young bucks any more. (The current average age in the US of PCa diagnosis is 67.)   Men, by the time they hit 60 or so, routinely start to have some lessening of ability, even if they have never had prostate disease.  It is part of the normal course of life and aging.

I hope some of this helps you and others in some way,

max

MK1965
Posts: 179
Joined: Jun 2016

vellani,

sounds like max indirectly pointe to my experience so I want to give a bit more of details,

I was 51 at time of dx and survery. I wish my experience is as good as max pointed. Had surgery on November 2, 2016, RALP with bilateral nerve spared according to my surgeon in which i doubt.

Now, at 7 1/2 months post surger I still did not experienced anything spontaneous, not the slightest sign of life in my penis. ABSOLUTE ZERO. Just to mention, I experienced my first orgasam at about 6 months post op, which almost everyone experienced at 4-5 weeks post op. My orgasam is nothing to talk about, like switch was turned off without anything satisfying in it and "I run marathon" to get to that point.

I did not have any success with Cialis and VED.

Started TRIMIX in April. TRIMIX gives me erections and I had 2x succesful sex. My problem is I lost 2+ inches in length and my penis looks patheticaly small in erection like pre pubescent one. It is hard to keep it in right place while having sex, it falls out of v......a. TRIMIX gives erectione but can not stretch penis to anything close to pre surgery length. The only good is, I am in long lasting relationship and my wife is very supportive.

My confidence is damaged and I do not feel good about myself.

One thing that I want to point to is: I DID NOT SEE SINGLE SUCCESS STORY POST SURGERY HERE NOR AT ANY OTHER FORUMS THAT I POST. ISNT THIS ENOUGH SAD FOR EVERY SURGERY PATIENTS ESPECIALLY YOUNG FELLAS LIKE YOU AND MYSELF.

Before surgery I never had problem achieving and maintaining erections and I am helthy and very active guy and not on any meds.

Before surgery I was told I am perfect fit for robotic surgery and excellent outcome and recovery but as you see, I am extremely far from expected, on totaly opposing side.

SURGERY WAS BIG Disappointment FOR ME AND MY BIGGEST MISTAKE.

I hope you will be able to report something better very soon.

MK

 

 

Grinder
Posts: 442
Joined: Mar 2017

Getting a better picture now of what happened to MK, but still haven't pinpointed what happened yet. It was robotic surgery, I am guessing DaVinci? The old robotic surgery was a floor model that looked like a science fiction robot. In my DaVinci surgery, the machine looked like a giant white gleaming octopus that was overhead, with many devices on the ends of of many metal tentacles. 

I wanted to joke with the surgeon and ask just before going under "Doctor, after the operation, will my wife still be able to play with my piano?" I didn't ask.

I'm guessing either enough time has not lapsed, or maybe the surgeon was not able to spare the nerves adequately. Even so, the body has a way of finding new routes for nerve stimulation. I am still hoping MK will improve over time. 7 mos. is not long enough for a final diagnosis. I repeat, one urologist said 1 to 2 years, with active methods of keeping blood circulating to the business down there. Another circulation trick is the contraction of the muscles used during orgasm. Similar to the kegels, muscle contraction always has the dual benefit of exercising the muscle and increasing circulation to the business area.

Bad circulation as in type 2 diabetes is also a culprit in ALL forms of ED and other anomalies. Blood fails to circulate the oxygen necessary for cell function. Robbed of oxygen, organs can atrophy and malfunction. Same for your business. Without blood circulated oxygen robbed by the diabetes, there won't be any organ function in the business.

All these things must be considered, but one bad side effect is inevitable in RP... Like MK said, you lose 1 to 2 inches of length. So you may recover the hardness, the sensation, and the "diameter" before RP, but you won't regain the lost length. 

 

GeorgeG
Posts: 127
Joined: May 2017

As above, it can take time. My surgeon told me about 18 months for most guys to get what they get but that he has seen it take up to 4 years. Everyone is different. He also told me that most guys get the best results standing. I found out quite by accident that squating helps me get started, like as if you were a baseball pitcher. Never read or heard that one so we are in fact all snowflakes.

 Also as above, use it or lose it. Decide on how you want to get blood flow to the area with a specific choice or a combination. I have alternated Cialis, a vacuum pump and my wife getting overime hours. I am 8 months post op and have partial unaided activity now. For the first 2 months it was absolute zero. I am 62 and had partial nerve sparing with RP.

Nothing wrong with seeking encouragement here, I hope that a few guys chime in that are back in the saddle. In the meantime, visualize your own success story. There are no gaurantees but it has worked for me in many areas. Your brain and nerves have some work to do and it's not all autonomic. You get to participate. Have you ever had trouble with performance during stress or maybe at least a decrease that needed more work? The opposite can also be true. Vince Lombardi once said that we didn't lose the game, we just ran out of time. IOW, keep working the problem and move toward success. 

Good luck,

George

 

MK1965
Posts: 179
Joined: Jun 2016

George,

As you quoted V. Lombardi: “We didn’t lose the game, we just run out of time.”, it was perfect match how I felt at 20 and 22 months post RALP. Men are mentioned they recovered EF at 6, 8, 12 months post RP and many research papers are mentioned what you have at 18 months post RP that is what you gonna have for the rest of your life with considering age decline. At 18 months, I was still at zero spontaneous activity and no response to PDE5i like Viagra and Cialis.  TRIMIX was extremely painful up to 24 hours post injecting and BIMIX was not producing erections suitable for vaginal penetration. On my imaginary monitor, I saw flat line like PEA on cardiac monitor when heart produces last small bit and goes into flat line. At 6 months, I had a feeling that my erectile recovery is going nowhere but I still continued it very aggressively because I was not ready to lose the game. As monthis were passing by, I started feeling time crunch but still losing the game was hard to accept.

 

At 18 months, while entering 4th quarter of the game, score difference was getting larger and larger an I realized winning the game for me was out of reach. At 20 months, my score was disastrous and losing the game was inevitable for me. At that point in the game, I made decision: Ihave to win this game despite score and time being against me.

At 22 month, I made successful throw and scored 3 points from distance which led to win at 23 months post RP.

what I learned from this game is that endless waiting is leading nowhere.

That would be summary of my 29 months post RP with adding my PSA is <0.01.

MK

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3327
Joined: May 2012

Mk,

Delighted, and a bit surprised, to read this after the troubles you had.

You'll be a closer pitcher for the Dodgers in a year !

MK1965
Posts: 179
Joined: Jun 2016

Max,

i scored sex with IPP implant only.

in my case, everything else failed.

MK

Clevelandguy
Posts: 470
Joined: Jun 2015

Hi,

Got to keep trying, it took me about a year to get a usable erection but was still having "limp" sex in the mean time.  Keep on getting the blood flow in that area to aid in the recovery.  I feel my firmness is back around the 95-100% range and seem to have better erections in the morning.  The pressure of performing I feel did impact me but as I get harder, the mental thing started to go away.  Never heard about the squatting thing, hopeofully my wife won't think I am freakin out LOL.

Dave 3+4

GeorgeG
Posts: 127
Joined: May 2017

After my accidental discovery I was demonstrating my strange find to wife and she said I don't remember seeing that in the take home instruction package from the surgeon. I think I'm going to need a diagram.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3327
Joined: May 2012

Welcome, vellani.

I believe you are correct: Boards such as these are the perview of men who need them, who have some issues to resolve.  RP continues to be either the most common first-line treatment for PCa in the US, or tied for first with Radiation overall.  Thousands upon thousands of surguries annually.  But the number of men here posting unsatisfied with surgery is a handful.  Hence, one would have to agree with your insiight that men who have done well simply leave the Boards.  Statistically, logically, the overwhelming majority have moved on, resolved their conflicts, are out living life.   The primary objective following the discovery of any cancer is its eradication.  Side-effects, by definition, are secondary.   Important, but not primary.

In terms of men I have actually known (personally, face-to-face) with PCa there have been about 10.  All (100%) chose surgery as first-line therapy.  I never heard one complaint of side-effects later in life from any of them, ever (some have since died,and of recurrent PCa).  Like me, they were blessed to be success stories, or at least regarded themselves as such, at least for a long time.

Perspectives differ with every man, as they should.  But yes, most men, obviously, are pleased with their outcomes following prostectomey. No doubt all would prefer to have never had cancer, to have never suffered pain or any side-effects.  But well enough to give thanks and move on with living life.

The surgery-radiation debate has raged here for decades, and will continue to do so.  Why ?   Be well and live life.  No man here can tell you what your sexual function will be in a year.

If you imagine the song below sung to prostate cancer, or to the gland, or to sexual ability generally, rather than to a person, then it fits the survivor's situation perfectly.   Round and around and around and around we go.  Where it all ends, nobody knows.   As Shakespheare wrote, it is "a sound and a fury, signifying nothing."

If you have surgery you will at some future time regain potency with relative quality if your experience is like most men's.  If you are like a minority of others, then not.   Any commentary beyond is bluster.

https://www.youtube.com/watch?v=InZ8OfFEmdQ

 

hewhositsoncushions
Posts: 279
Joined: Mar 2017

The success rates are many and varied but definitely not as broad brush gloomy as MK1965 makes out. On my other forum a member is in a circular kicking competition with themselves after RT with poor side effects.

I have about 60% function after over a year (can get an orgasm with a good run up but the horse occastionally just sits down to eat grass instead of running to the finish line) but have had about as much luck with full <Content removed by CSN Support Team> as Theresa May is having trying to thumb Brexit in. I suspect much of it is in my head.

Honestly I think it is about the patient's specifics not the treatment.

H

jmikew
Posts: 19
Joined: Jul 2012

I had robotic surgury 6.5 years ago...I was 51 at the time and I was able to get an erection in about 8 weeks with the help of Cialis (or one of the other ones) I found that taking the whole pill made my head feel all stopped up...so I would break it into quarters and that worked for me...after about 6 months I didn't use or need them any longer.  First few orgasims were kind of painful, but not any longer...now they are just weirdly different than pre-surgury.  My only issue is that I found out two weeks ago that my prostate cancer has returned and I am sick about it!  Meeting with radiologist today...looks like they will be doing 7 weeks of radiation and 6 months of hormone therapy...so I guess I can kiss erections goodbye for a while and just hope that they come back after the 6 months of no use.  Best of luck for your recovery and I hope they got it all.

 

all the best,

 

Mike

lighterwood67's picture
lighterwood67
Posts: 219
Joined: Feb 2018

Well, I am 68; Gleason 4+3=7; RP; Badder neck Reconstruction; Pelvic Lymph nodes dissection; RP 3/20/201 Davinci.  I am fully continent (this happened around the 4 to 6 month time period).  I am experiencing ED issues, but at this point I am able to get around a 75% erection capable of penetration without the aid of Viagra or Cialis anymore.  More importantly, my PSA is undetectable. I am what they call a NED (no evidence of disease).  I too like success stories whether you choose, AS, AT (Active Termination RP), or hormone and radiation or any other of the myriad of options available.  I am not doing as good as some, but I am doing better than some.  The main thing is I am still doing.  Wish you luck on your jouney.

Blogsite
Posts: 1
Joined: Feb 2019

I'm 40-ish days in (not keeping track, but my badge will say) and my ED problems are pretty much gone. I'm not back to the point where I can get hard just thinking about sex, but when my girlfriend and I start kissing and caressing in a "let's have sex" way, the little guy pops right up. So my advice would be to just give it a shot with the girl. Maybe it'll you'll get hard, maybe you won't. You won't know until you try. legal steroids for saleWhatever you do, https://www.diethealthsupplements.com/don't test or edge to make sure everything works.  

fdg
Posts: 6
Joined: Jun 2017

Well, I'm in an in-between spot. I am 18 months out, taking daily 20mg viagra, using the pump and trying to masturbate at least once a week. I have recovered some, but not enough for penetration.  Wife is helpful, but I'm beginning to despair i'll recover even 75% of prior potency, which was good but not great before. I occasionally needed cialis, but not always. I'm 54,  6', 215lbs, fit cardiovascularly, no medical probs other than the prostate cancer. I'm on zoloft, at a minimum dose, which I understand can cause ED, to some extent, but the drug is worth it, so....   Anybody else now have decent function after not regaining erections over 18 months later???

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3327
Joined: May 2012

fdg,

Zoloft commonly causes sexual problems, but not (usually) the ability to get an erection. What Zoloft mostly does in men is impede the ability to "seal the deal," or orgasm.  I've used Zoloft, and it has never prevented erection, but did do the other.

MK1965
Posts: 179
Joined: Jun 2016

fdg,

At 18 months post RP, I never experienced even the smallest sign of life in my penis despite using aggressive penile rehab.

At 20 months still no sign. That was the point in time I made decision to get an implant.

At 22 months post RP, I still did not experience any response from my penis. Was using BIMIX which did not produce usable erectionfor penetration. 

Had my IPP 3 days after I turn 22 mony post RP.

I had my RP at age of 51, was and still I am very healthy, not on any meds except Clomiphene for low T, excercising regularly, 6’2” and 215 lbs. My RP was nerve sparing bilaterally and still I did not recover anything usable for penetration. Before RP, never had problems with achieving and maintaining erections as long mywife and I wanted and needed. Before RP, never tried Cialis or Viagra because it was no need for them. RP screwed me up So badly to something I would not even expectthe in worst case scenario.

Thanks God for implant. Other wise I would never be able to have sex.

i am same age as you, 54. Don’t waste your time waiting to long for erections to happen. If it did not happen by now, 18 months post RP,

chance to recover erectile function is very slim. Make your plans or you have already plan B ready.

MK

fdg
Posts: 6
Joined: Jun 2017

Thanks, MK.  I do have signs of life. I’ll guess about 60% of the way to having an erection capable of penetration.  Was nearly zero first 6 months. I also read a recent study that many men are getting improvemeets as long as 4 years out. That said, I appreciate your thoughts and am considering them. 

MK1965
Posts: 179
Joined: Jun 2016

fog,

i am glad, you have some responses. Since you had ED before RP, then it might take longer to get to the point of penetrative sex.

But, at least, some hope is there. You might want to try injections to get that ability to have a sex, and also, injecting might boost and speed up of erectile recovery. Everything less invasive, is worth trying.

Good luck!

MK

Clevelandguy
Posts: 470
Joined: Jun 2015

Hi all, like my one friend told me several years ago, use it or lose it. Got to keep you buddy stimulated by any means chemical or physical. I noticed that the longer I let “my friend” rest the less morning erections I have and the softer my doing the business erections are.  I am a firm(no joke intended) believer that you have to keep getting that blood in there. Don’t let your buddy take too long of a rest between duty calls.

Dave 3+4

Juma
Posts: 1
Joined: Nov 2019

It's November and men across the world are leaving the moustaches unshaved to pay tribute to men's health. The idea behind Movember and No Shave November is meant to remind the world of the hair men and women lose when undergoing treatment. This is also a good reminder that there are little things in life that humanity tends to take for granted like being healthy and in shape. Those are things money can't buy here in this world. So, let's all appreciate the opportunities life has to offer and be supportive to the quest of good health management practices.

r656565
Posts: 3
Joined: Dec 2019

I am 3 months out from my surgery, 54 years old and in great shape.  Had sex 4-5 times a week before surgery.  After about 4-5 weeks post surgery I was getting 3/4 of an erection with 20 mg Cialis.  A week later I got 3/4 of an erection with nothing at all.  I thought I was on my way.  Now well over a month later I am stuck in the same spot.  I even tried 20 mg Cialis with 100 mg Viagra and it made no difference.  I did try the Viagra before the surgery to see the effect and it worked like I couldn't believe, so I know it works on me.  I even tried the trimix the other night and it got me to the same spot (although I could blame the mental aspect of sticking the needle in which left me shaking, plus it did hurt some).

Has anyone that has had success hit a wall like this at any point?  My doc is telling me that I'm doing great and to be patient, but I just hate not seeing any progress.  I am doing what clevelandguy said and making sure I do have orgasms at least a couple of times a week.

Any positive words would help.  Thanks!

Clevelandguy
Posts: 470
Joined: Jun 2015

Hi R6,

In my opinion at 3 months out you still have a lot of healing to do.  I noticed ED improvements well past my first year and leveled off around two years.  So give it some time, every case is different so there is no one fits all time frame. I agree with your doc, be patient and keep getting the blood flow to that area by any means possible.  Taking the Viagra on a daily basis might not be a bad idea.

Dave 3+4

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3327
Joined: May 2012

Similiar to Cleveland,  I continued to have improvements up to the three year point or even beyond.  There is absolutley no reason to think that you will not continue to get additional improvements over time.

lighterwood67's picture
lighterwood67
Posts: 219
Joined: Feb 2018

Well, I am still hovering around 75% recovered from ED (20 months post RARP) and I am able to penetrate.  Look we all know we will never be the same after having our prostate gland, seminal vesicles, maybe some lymph nodes removed, maybe bladder neck reconstruction.  The physical intervention causes problems (incontinence; urethra shortening; ED).  This is not an easy journey.   I keep telling myself with all of the side effects (most of which I am doing fine with, I am 69).  I tell myself, just maybe, with all the surgery and side effects that I may have dealt this cancer a knock out blow.  At this time, I am doing just about everything I was doing before the prostate surgery.  Impact to Quality of Life minimal.  So, take care on your journey.

Clevelandguy
Posts: 470
Joined: Jun 2015

Hi All,

Diddo on what Lighterwood said, my robotic surgery has not slowed me down one bit. Yes I wear a light pad daily and yes I am not as firm as I was but still get the job done according to my wife. I am not going to allow my cancer to slow me down or change what I want to do.  If I need to I adapt.

If I had it to do all over again I would still choose surgery as I hope it has removed my cancer for good(four years undetectable) thanks to great doctors and facilities.  Let just hope all of us that have had some kind of treatment remain cancer free as long as possible.  The lasting side effects for me are well worth the chance that I will be cancer free. The future will tell............

Dave 3+4

Grinder
Posts: 442
Joined: Mar 2017

I was a year removed before I had complete recovery of erectile function ... my only complaint was I was significantly shorter .. But Stubby was just as rock hard as before surgery at age 62 three years before.

But I did want to mention the vacuum pump... it draws blood into the corpus cavernosum which helps heal surrounding tissue and nerve endings.

They are easy to use and not painful at all and they create enlargement to help get you on the way to erectile function. 

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