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Posted 4/16/2017 3:08 PM (GMT -5)
Hi All,
Happy Easter to all who are celebrating.
I am 5 1/2 months post RALP 4+3 after biopsy 1 of 12 cores positive at 10%. Incidental diagnosis of prostate Ca in June 2016 after TURP.
RALP was not really my choice but I took it after advices from urologists, RO and my wife who happened to work at urology clinic in teaching hospital. Wanted to do some type of radiation combined with short ADT.
My surgical recovery was very painful but somehow I recovered from it in 3-4 weeks.
Incontinece was really bad for first 10 weeks but in weeks 11-12 I recovered about 70 %. By 3 months I was dry about 98 %. By this time I would say it improved to 99%. Some dribble or squirt on excretion or heavier lifting.
ED wise now at 5 1/2 months i did not experience any sign of life even the smallest one. Started Cialis at 10 weeks post op 10 mg daily with once a week full dose.
At 4 months started VED with no results. While in VED tube my penis looks like my old one but once I pull it out of VED tube it goes faster to soft than BMW from 0-60. With penis rings it lasts for 2-5 minutes deflating quickly. Never was usable for penetration.
Recently, due to insurance change I needed to change urologist who did my TURP and RALP. New urologist did examine me and asked a lot of questions about surgery and recovery ( brought some records with me) and suggested to start me on TRIMIX. Scheduled teaching for self administering of penile injections next week. I am terrified about needles to any body part so not sure if my gut will be able to do it.He mentioned something about my bulbocavernosal reflex to be completely absent which he said it should be back unless I have spinal cord injury which I never had.
Before surgery never had any ED issues and never used any ED aids.
I am healthy, not on any other meds beside Cialis, Oxybutinin, Vit D and Glucosamine. I am 6'2''' and stable weight around 210 lbs. Also, very active.
After RALP never experienced orgasam.
Reading on many prostate Ca forums about ED and sex after prostatectomy, seems to me I found very few with something similar to my recovery.
And to add penis shortening: Lost 2''. Wondering if anything will be able to bring it back?
Would like to hear from those with not so good experience after RALP with regards to regaining sex life back.
In general: I am totaly disappointed with surgical outcome.
At 52 now, it left me without nothing to look forward.
I don't drink, I don't smoke, I don't gamble,I don't flirt, so at least I want my sex life back to share it with my wife of 29 years.
I do not think I want much, just what I should not loose in the first place.
MK
Posted 4/16/2017 3:37 PM (GMT -5)
Trimix is the next step. It's still possible that things could recover on their own, but a little extra help is in order.

Everybody's recovery is slightly different. So guys get ED problems that never resolve while others are back at it a few weeks after surgery.

Needles do have a fear factor, but like many things you can learn to do it.

Andrew
Posted 4/16/2017 3:41 PM (GMT -5)
Sorry to hear about your impotence. Did you have nerve-sparing surgery? Have you loost 2"? Don't understand how that is possible. Have you asked the surgeon for a explanation?
Posted 4/16/2017 3:47 PM (GMT -5)
Gemlin,
Yes, I did have nerve sparing RP according to my surgeon. I asked about shorter penis at 7 weeks when I lost time sew him. Answer is: it will come back with erections but who knows when it is going to happen?
Just have a second navel a few inches below the real one.
MK
Posted 4/16/2017 7:56 PM (GMT -5)
You story matches mine and I am 100% Ed and I am two years out and I also lost 2 inches as well. I use Trimax and it does work, but there can be pain with the erections, but it is worth if for sex. I keep trying the pump and everything I can to get the little guy up and no luck. The up side is I am a 0 on my PSA, but I sure would like this thing to start working a again. Good luck on your journey.
Posted 4/17/2017 6:12 AM (GMT -5)
4 & 1/2 years out and I got zip too. Nerve sparing turned into nerve losing when the doc got in there as my cancer was 'spiky' and 'sticky'. (read that as invasive and aggressive). Length loss is about 1 & 3/4 inches as measured with that neat little ruler on the Erecaid pumps' plastic cylinder.

The loss of penis length is common, there are lots of theories. "Saving Your Sex Life" docs says it is due to localized muscle retraction from the release of adrenaline from the damaged nerves. Your Cialis Daily prescription is meant to counter that adrenaline, at least as far as blood flow is concerned.

You need to use the pump for at least 15 minutes every day as long as you do not have nightly erections. You are replacing those nightly erections with the pump so you need to use it pretty much every day to keep the spongiform bodies flexible and inflatable and to avoid the buildup of scar tissue in them.

For a better, longer - lasting erection with the pump, try an "EZ Ring". I cannot use the standard rings at all, but the EZ Ring holds surrounding tissues down while you inflate an erection. As with the regular rings, exact placement is of pivotal importance as you want to allow blood in and then keep it in so those little rubber nubs need to be right over the veins they are compressing. Otherwise, the erection indeed fades quickly.

I had to get the next smaller ring as the first one I tried was too loose and allowed my testicles to get pulled up past the ring. smhair

Gratefully, I have much more going on in my life other than sex, though I enjoy that very much. More so now that I have a little bit of testosterone on board. cool
Posted 4/17/2017 7:15 AM (GMT -5)
I also had nerve sparing RP. I used a pump every day for the first two years and also have taken 25mg Viagra daily for three years now. Before I only had to think of sex to get an erection, now I get the blood flowing in and length but it is still pretty soft and not hard enough for intercourse. I am very frustrated and thinking about going for an implant but my doctor is still saying wait another year. Don’t want to go the injecting route so have a decision to make. Actually wish I never had the surgery and went with radio therapy. Anyone had erections return after 3 - 5 years???

69yo Robotic Surgery March 2014.
Posted 4/17/2017 11:55 AM (GMT -5)
Hi,
Sorry to hear you're frustrated by ED issues.

I had my surgery a month before you did, so I'm 6 months out now. I was essentially dry after the catheter was removed, so all is good there.

ED is present now as I expected. My surgeon urges therapy with Viagra several times a week. I felt pretty beat up down there for the first 6-8 weeks so I avoided any stimulation. The surgeon's PA told me to proceed at my own pace, so I have.

Recently I was able to get an erection using 100mg of Viagra. However, other times my wife and I have attempted sex, without Viagra, I achieved some hardness, but not enough for penetration. I sense my system is getting better.

I just had my 6 month follow-up appt. with my surgeon and team. They felt I should start doing more sexually, but were encouraged that drugs were helping. They confirmed what I already knew. Although about 75% of my nerves were spared, they are stressed by the operation. Nerves in that state can take a long time to fully recover; sometimes a year. (I've had some cervical arthritis causing nerve problems in my arm and fingers. That took, with therapy, about 6 months to resolve.)

So I am being patient. I've read that return of "normal" sexual function can take between 1 and 2 years. I had a normal sexual function for my age prior to surgery. I hope for something like that in the future. But I'm getting older, so who knows.

We are all different. I urge you to get other opinions, and try other therapies till you are satisfied. You're young and that should help. Keep on keeping on!
Posted 4/17/2017 1:13 PM (GMT -5)
I want to thank you all for your response.
Hope to hear more from those with not so good results.
Tennisplayer, I am glad for you. You at least experienced something, so that is encouraging sign and I am sure it boosted your hope that something is on the way. With age difference of 15 years, I strongly feel in near future you will have usable erections. Your recovery gives me also hope but still I an on ground zero.
My plan is to try injections and if that does not work than I will accept it as Gods will and stop all experiments.
Nothing goes against Gods will.
MK
Posted 4/17/2017 1:36 PM (GMT -5)

MK1965 said...
I want to thank you all for your response.
Hope to hear more from those with not so good results.
Tennisplayer, I am glad for you. You at least experienced something, so that is encouraging sign and I am sure it boosted your hope that something is on the way. With age difference of 15 years, I strongly feel in near future you will have usable erections. Your recovery gives me also hope but still I an on ground zero.
My plan is to try injections and if that does not work than I will accept it as Gods will and stop all experiments.
Nothing goes against Gods will.
MK

I'm not trying to be disrespectful of your feelings, but this is no time to give up. There are discussions about injections on this forum. Most people say they work, once you get the dosage right. Don't quit trying though; you're young and you had surgery only 5 months ago.
Posted 4/17/2017 1:54 PM (GMT -5)
It can take a year or two.

Patience is needed. My dear old daddy taught me a prayer for patience:
"Lord grant me patience, and I want it right now."

hang in there, you never know what will come up,
Andrew
Posted 4/17/2017 3:40 PM (GMT -5)
MK,

I realize you are discouraged but you are way premature for despair. It's frustrating to be where you are (I've been there) but here are three reasons to remain hopeful for a while.

1) It's early days for you. A majority of men recover erectile function after prostate surgery -- not all of them but well more than half -- but that process takes up to two years and even in years three and four some men continue to see improvement. Adding to that delay is that it is fairly typical for ED to continue to get worse for the first couple of months. So, effectively, you are only a couple of months into a years-long recovery process. So you have to give it time. Which doesn't mean you have to wait patiently. The chances that you will recover well -- or quickly -- will be improved if you can find some way to get unnatural erections while you wait for your natural ones to return.

2) Trimix has an 80 to 90 percent success rate, depending who you read, and it'll help keep your erectile tissues in working order while your nerves recover. Men with working erectile nerves get several erections every night during R.E.M. sleep. This helps keep the tissues oxygenated and stretched out. I injected three time a week, more or less, for two and a half years just to keep my naughty bits from shriveling.

3) Trimix isn't the last thing to try. There are implants. I have one and it works. After three years I realized that a) I was unlikely to recover spontaneous erections, and b) I had a venous leak that limited my response to trimix. So I went bionic and I'm glad I did.

As for your loss of size I think you will find that when you inject you will find most of those missing two inches. They're not gone, they just ride lower and further back than they used to. They are still available when needed.
Posted 6/4/2017 2:07 PM (GMT -5)
PeterDisAbelard,
Thanks for your response. Read it twice to fully digest its message.
At 5 1/2 months started TRIMIX full strength 0.1 ml or 10 units.
It gives me erection, but I would rather say, it gives me PATHETIC ERECTION with size of pre-pubescent penis size. My short coming is even more pronounced in erection. That is worst to see than in soft state. I do not know nor my second urologist what happened to my size and my urologist while teaching 1st TRIMIX injection and after waiting for response came 3x (20 -25 min apart) to check on my penis response. After 1 hour from injecting he was not happy with the size but for hardness he said 70%. So far, I injected 19 times but no change in size and no growth/ stretch in length.
Only good thing is my long stable relationship, otherwise, I WOULD BE HUMILIATED BY MY NEW SIZE.
I would like to hear if any one experienced same.
MK
Posted 6/5/2017 9:51 AM (GMT -5)
I struggled with ED after my surgery. Dependable erections took 2 years post-op. I struggled again after radiation and 15 months of triple hormone blockade. That recovery also took about 2 years after the end of radiation.

My penis shrunk 1.75 inches and it appears to be permanent.

After surgery I used a pump and trimix to help things along. I also got Peyrones Disease, though not a bad case. I think it was a combination of the injections and the restriction bands the pump came with. My Urologist just shrugs his shoulders and says there is no proved linkage.

I now get erections capable of penetration for at least one half hour by using:

The pump without the constriction bands. Instead I use a "cock ring" I bought on Amazon that has an adjustment ball that goes around the penis and testicles. This hopefully will take direct pressure off the penis and won't aggravate my Peyrones Disease. My penis doesn't turn blue or get cold like it does when I used the constriction bands. I also am not limited to using it for less than 20 minutes like I did with the constriction bands.

100 mg of Viagra

.5mg of Cabergoline (Dopamine Agonist) three times weekly

100 mg of Levodopa in the form of Mucuna Pruriens. This boosts Dopamine levels in the brain which supports desire

5 mg of Yohimbine HCL

2 grams of L-Argineine (a precursor to nitric oxide - an important component of blood flow to the penis)

60 mg of Pycogenol (increases the bio-availability of the L-Arginine

Except for Viagra and Cabergoline, these are supplements that are all available over-the-counter. Never give up on your sex life. You do NOT need erections to orgasm. Oral sex worked for my wife and I until I recovered from ED both times.

Best of luck to you!
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