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Spontaneous erections after RP

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Posted 7/8/2012 12:30 AM (GMT 0)
G'day from Australia, I'm a new member of the forum and had RP 22 months ago. Now 64.

Tried Ciallis tabs and Coverject injections (not regularly).  Got some 7-8/10 erections from the latter, nothing from daily Ciallis.

Can anyone tell me if they had spontaneous erections following their RP?

I haven't tried the gel substances.  Any progress with them?

Thanks

Posted 7/8/2012 12:55 AM (GMT 0)
Sticks -- Welcome to Healing Well and to the club nobody wants to be a member of. This is a great place to be though; a lot of knowledgeable caring people. If you have questions ask. I know we also have some brothers and sisters from Australia.

I did not have spontaneous erections after my RP, but I’ve heard of some that recovered from ED very quickly. I was on low dose Viagra pre & post-surgery plus a weekly try at full dose, but I could only achieve 5/10, so doc put me on Trimix injections and they have worked fabulously. At just over a year post surgery I’m lowering my Trimix dose and getting good results from Viagra and even some decent results with no meds

Asked my doc about Trimix gel at my 1 year appointment and for what it’s worth he said only about 40% of men respond to it and it’s not very good at getting the medicine where it needs to be – so in his opinion it’s not worth fooling with.

By the way let us know your stats - like mine below
:
Posted 7/8/2012 1:02 AM (GMT 0)
You shoud be able to get to a 10 with injections - will need to increase your dosage.

Typically, where you are at about 2 years out is where you will end up, unless there are extenuating circumstances. If bimix or trimix is available in your area, you can try them as well. I have not tried the gel, but others on the forum here have and have had good success.
Posted 7/8/2012 9:53 AM (GMT 0)
I can and I've read reports from another 4 people here. I think there are several factors to consider on why we were able to recover this way and all of us being in our 40s is certainly one of them.
Posted 7/8/2012 11:23 AM (GMT 0)
G'day again from me and thanks to those who have replied so far to my thread. A couple of specific questions to you:
Tigerfan53 - is Trimix like Coverject injections?
And how do I get the stats to the bottom of the post like you all do?
Im_Patient - not sure if your comment of 2 years is affirming or negative - I'm taking the latter - ie I think you are warning me not to expect to get much better in spontaneous recovery. And I thank you for that. I take it that I have to do more to get erections - I hope I haven't left it too long waiting for them to return!!
And Davidg - thanks for the positive input - but i'm no longer in my 40's - hence maybe these outcomes don't apply to me.

My stats are that in July 2008 PSA was 3.9;
18 months later in Jan 2010 it was 4.5 and DRE showed lumpiness and I had symptoms of slow urine flow - biopsy clear;
August 2010 - PSA of 5.1 - ie 0.6 increase in 6 months whereas it took 18 months previously - so another biopsy - this time 2 of 6 sites showed cancer with Gleason scores of 6 and 7 - the latter indicated surgery was required and I had a RALP in September 2010. 4 days in hospital and a week off work.
PSA's at 3, 6 and 12 months all less than 0.5 (ie effectively zero).
Urine flow recovered quite quickly and now about 99.5% controlled.
ED is another story and I'm frustrated as is my wife!
I am on strongish aspirin based medication (Asasantin) due to TIAs a few years ago so not sure if thinners effects blood flow to the penis in ED. Also I have had really low testosterone which I am having injections to correct - 2 so far and it has returned to normal at last test.
In a couple of weeks, I am going to consult with a friend who is a urologist to review where I am at - he also works with my surgeon so will have all my records available and I spoke to him at the time of my operation.
Given no response to Ciallis I am thinking at the end of this months script I will try Coverject again (or is Trimix better?).

Thanks for your interest and support.

Sticks
Posted 7/8/2012 11:24 AM (GMT 0)
Sorry should have said margins were clear and no invasion any where else as far as we know.
Cheers
Posted 7/8/2012 1:19 PM (GMT 0)
Hey Sticks,

I think you can find answers to most of your injection questions at:
http://www.ustoo.org/PDFs/Injection.pdf

The paper covers the difference in Trimix and Caverject.
Posted 7/8/2012 2:28 PM (GMT 0)
Thanks RCS - read the article - very helpful. Will help my discussion with my specialist.

I suppose one of my key questions/anxieties is whether I have left it too late to do more active "work" on my erections and not to be too disuaded from persisting with my rehab?
Posted 7/8/2012 3:08 PM (GMT 0)
Sticks: I'm afraid to say that it is generally accepted that where you are at in 18 months is were you will be for the rest of your life. I'm six months post RP and do get some nocturnal erections when I take low dose cialis. Taking a full dose with good stimulation from the wife gets me to a limp 50% full maybe. I hope the nerves continue to recover but one just doesn't know. I have heard stories of guys getting it back after three years so don't give up.

I don't mean to step on tigerfan's reply, but caverjet is also called alprostadil, postagladin E1 or pge1. Some guys like me get one hell of an ache from it. Trimix is a three component blend of alprostadil, phentolamine, and papaverine. These three components work synergisticly to produce a very powerful ed med that doesn't normally cause the ache. I still get an ache from trimix but it is manageable. It has been great having fun with the wife again and the needle prick is just a verrrrry tiny prick in a small prick which makes it a big prick.

If you look at this page near the top on the left hand side you will see "Logoff | Profile". Click on profile and then click on "edit profile". Scroll down to signature and add you stats in the signature dialogue box keeping it very brief because you are limited to how big you signature can be. 'When you are done click the "submit" box at the bottom.

Hope this info helps
Posted 7/8/2012 3:26 PM (GMT 0)
sticks,

i can answer "yes" to your question, thought i seem to be in a rare club. i had open surgery late in 2008, and was on my original catheter for 63 days. i was having full natural errections not long after surgery, while still on the catheter. when i came off the cath, they were fine for "normal' sex. the amazing part, and my surgeon still won't take credit, is that all of the left nerve bundles were removed during surgery, and the right side was suppose to be removed, but were left "damaged" in place due to surgical difficulties. despite that, i have never had any ED either post surgery or even post-Radiation. i just consider it the luck of the draw, and so does my doctor. it can happen that way, but i have come to believe it's pretty rare.

my best to you,

david in south carolina
Posted 7/8/2012 3:49 PM (GMT 0)
Thanks purgatory - you are indeed a lucky one!
And desertrat1 thanks for your info - I'm going to ask for a trial of trimix and stop the daily ciallis - I've not tried a higher dose of ciallis just for "the event".
I'll keep you all posted now I've found this site!!
My wife would love me to get some better action happening - at just turned 60 she doesn't think she should retire from activity just yet!!
Posted 7/8/2012 5:47 PM (GMT 0)
Hey Sticks,

As to your starting penile rehab too late, all I can say is that you won't know unless you try.

My recovery has been very slow. At three and a half years, I am still seeing improvement and hope to be able to not have to use the pills in the future. This may be wishfull thinking on my part, but as long as I'm seeing improvement I'm sticking with the rehab.
Posted 7/8/2012 8:25 PM (GMT 0)
Thanks RCS, I'll go with that attitude and let you know.
Cheers
Posted 7/8/2012 8:34 PM (GMT 0)
sticks, while i was fortunate on the natural part, unfortunatley, i deal with so much chronic pain and fatigue, my "mood" isn't always there, even though the ability is. but i am not complaining, not any spring chicken either, as i am turn the big "60" this coming friday. my youth is behind me, sobs, lol.

btw, we have some great aussies like you here at HW, we love our mates from down under, so you should fit right in.

david
Posted 7/9/2012 2:42 AM (GMT 0)
Hi purgatory,  Again thanks for the encouragement and the Aussies reference - and you ain't that old at 60!!  It's the new 50 don't you know?

I'm still trying (at nearly 65) to improve my golf game, was swimming open water (ie ocean) funswims until a couple of years ago, in the gym 2-3 times a week and playing cricket every summer (old fellas ie veterans but competitive nonetheless).  The show ain't over mate so relax and enjoy for as long as you can I say!!

Cheers

Sticks

Posted 7/9/2012 3:08 AM (GMT 0)
Sticks,

My uro suggested that I do a 20mg Cialis once in a while in place of that day's 5mg. Just to see what happens.

You should try all the pills (Cialis, Levitra, Viagra) before going off on shots, if for no other reason than (at least in the US) you are more likely to get pills paid for than injections. Or at least get some sample packs from the doctor.

Don't give up - but "spontaneous" erections may not happen. It seems that some stimulation is generally needed when nerves are removed or injured.

Posted 7/9/2012 3:10 AM (GMT 0)
good advice, sticks, sounds like you are living the full life, so to speak. if it were not for my chronic pain and fatigue issues, i would be more active than i am currently capable of, so i have learned to substitute a lot of former physical things to things that i still can do and love. just making the best out of it.

david
Posted 7/9/2012 7:40 AM (GMT 0)
G'day 142, thanks for your advice - I was wondering about having a boost pill like a 20mg once every now and then and that was one thing I am going to talk to my uro about.

Sorry David that you have other things going on for you - I guess we are getting to the age when other issues crop up.  Chronic pain and fatigue are very difficult and compound the issue when together as you know.

And to everyone - it seems we don't have Trimix available here in Australia.  Just spoken to my GP by phone and he is going to look it up.  Any other Aussies on this forum use an equivalent - or is Caverject the best we have?

More later perhaps.

Sticks

Posted 7/9/2012 1:54 PM (GMT 0)
I had my robotic surgery in 6/2007 at the age of 56 and from the day the catheter was removed I was getting rock solid erections without drugs, but,,, only with a lot of manual stimulation.  I could not get spontaneous erections at that time.  I could look at naked women 24/7 and feel nothing, but as soon as a little manual stimulation was used, it was hard as a rock.

At about the two year mark, I started waking up every morning with a rock solid erection like I use to have prior to surgery, but as soon as I was up and walking, it would die immediately. 

 Now at 5 years post op, I still have morning erections when I get up, and  I can get a pretty good erection with some good visual or mental stimulation, and without any need to use my hand or may partners hand.  If a little manual stimulation is applies, my erections are as solid as I had prior to my surgery.  Matter of fact, if I take 100mg viagra, I can have an erection that will last for a couple of hours, but I just don't have the stamana any more to make use of it.

Posted 7/10/2012 2:07 AM (GMT 0)
Sticks,

Nope, no spontaneous. Zero libido, too. Still perform well enough, not great as before, with wife, perhaps due to 18 yrs of love. That's with 5 or 10mg levitra.

Docs put me on 5mg cialis daily for better blood flow, since levitra is just as needed. On it two days now. No "big" changes yet.

Bobbie
Posted 7/10/2012 11:07 AM (GMT 0)
NY-Sooner and Bobbiesan,  what a pair of contrasting posts!  But thanks for them both.

I'm jealous of course NY, I'd love a rock hard erection - even just once a month! rolleyes   I didn't get it with Ciallis first time around, then only 80% a couple of times with Caverject and nil with Ciallis currently.

And Bobbiesan, patience my friend - all in good time as you seem only to have had your operation 3 months ago!  However I am getting the picture from comments on this forum that the earlier you start bloodflow medication like Ciallis, Viagra etc the more likely you are to have better flow later - or am I wrong about that?  And of course you need stimulation - self or other provided!

Anyway, only 3 weeks to my appointment with another uro (he's an old friend from primary school who works with my uro surgeon and who I expect to be straight with me about prospects for future recovery) with whom I will review everything to date!

As regards libido, I understand that low testosterone has an effect on this but not on ED - any comments anyone?  I had very low T 2 months post op which has been corrected by HRT injections (2 so far - back to normal at last test).

Good health everyone in this unwanted club!!!  Supports great though - wish I had found it earlier!

Cheers

 

Posted 7/30/2012 2:18 PM (GMT 0)
G'day everyone again,

Had my review with new uro AC (old school friend as per my original post).

Progress good in AC's view, and he said spontaneous erections could occur up to 3 years post surgery.  That's a bit more hopeful.  tongue

AC has changed my daily 5mg ciallis to 20mg ciallis as required (for sexual activity) with another review in 6 weeks.  He also wants another PSA then which would be 6 months after previous one.

My uro surgeon despite doing an excellent surgical procedure according to his assistant, is not reknowned for his followup and only sees me when I want to.  AC wants 6 monthly reviews with PSAs.

AC predicts that I will probably return to caverject injections and return to the uro nurse for further "reinstruction or training" and maybe use a different needle (similar to a diabetic injector).  And outcomes should be better with the right dose.  Hence more activity and performance.  yeah

And all that mirrors a lot of what you people have also been saying on this forum.  So thanks for the support and I return same to everyone.

 

Posted 7/30/2012 3:41 PM (GMT 0)
Sticks,

Technically, we don't have Trimix in the states either. That is, there is no FDA approved drug sold as 'Trimix'. The only way to get it is to have your doctor prescribe all three of the drugs it contains and instruct the pharmacy to put it all in one vial. Every urologist seems to have his own preferred mix and the only way to get the prescription filled is to go to a compounding pharmacy (a place that makes custom medical mixtures).

I have a thread going elsewhere on the forum (Trimix w/ Training Wheels) that compares the various formularies used by various members of the forum.

There is nothing wrong with Caverject aka Alprostadil as long as you are not prone to the the prosaglandin ache. If you find the Caverject painful (not the needle prick or the initial sting but a long-lasting ache) then you might want to look into the Trimix (or Bimix) option in more detail.
Posted 7/30/2012 5:52 PM (GMT 0)
Sticks,

I guess I was one of the lucky ones, I had no ED before or after surgery and even had a few erections with the catheter. Afterwords I was having sex with my wife in a few weeks and have not used any ED drugs. My surgeon was very pleased and from what he saw while performing the surgery gave him a positive outlook for me in the ED department, but even he was surprised on how well I was doing without any drugs. It took some getting use to the dry orgasms but the intensity was just as good most of the time. Now 9 months later I am getting more nocturnal erections and still get arosed with no issues. Hopefully you will begin the road to ED recovery but from what I read before surgery and after each person is different, depending on the extent of surgery needed and the ED health prior.   

Good Luck! Hope things start looking up!

Posted 7/30/2012 8:34 PM (GMT 0)
I think I waited a bit too long between my RPP and starting trimix...about 9 months. But, my ED doc was great and after having continuous reductions in trimix, now the orals like levitra work good.

I consider myself lucky. My first dose of trimix was around 0.1 mL. My last was less than .02 mL..and that almost caused a 2nd ER visit due to priapism.

Now, < 5mG levitra is good.

Trimix/bimix does help many in recovery. My doc said about 25% of men after RPP that do trimix, advance to low dose orals..

Good luck.

Mike

PS: I'm almost 3.5 years post RRP

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