Hello everyone I'm new here and am grateful to find this online support community.
Since my radical prostatectomy in June 2014 I have had very challenging ED issues and would greatly appreciate any help or information to help ease the anxiety isolation and lack of confidence that I am experiencing. So far my surgeon and friends have said my only recourse is a penile implant. Thanks you all for reading this and your ideas and suggestions.
Hi Tim. I had my surgery in August 2014 & felt much the same as you. You are not isolated totally, there are a lot of us out here, it’s just that we wouldn’t recognise each other if we ever met.
And that’s what is so weird. No-one else would ever know that we have these ed issues, yet we feel so anxious and it certainly lowers our self esteem and knocks our confidence.
I assume from what you say that no medication works for you? For me the 2 years came & went and nothing was happening except that Caverject would create an erection. We considered an implant & researched it thoroughly but decided not to go ahead but keep it as a last resort if the caverject ever stopped being effective.
3 years came & went too, and still nothing. But in the last couple of months I have regained the ability to achieve an “enlargement”. I could never call it an erection but it’s so nice to see some growth & it’s great for my wife that she can cause some reaction .
My point is that if I’d gone for the implant none of this would’ve been possible. So please don’t give up hope - not yet at least.
As for your anxiety etc, I have no words of wisdom to help. Except to say that you’re not alone, there are many men in the same boat as you. I struggled & still do as I’m a long long way off functioning normally and every day I have bad moments all because of ed.
So many people asked me what I hoped 2018 would bring & I lied to them all - I couldn’t say my biggest wish was for an erection!
Sorry I can’t be more help but I hope this has at least confirmed that you’re not alone. All the best
Neil
Hello Neil! Thank you for your concern and feedback I really appreciate it!
Question, what is Caverject I am intrigued and will google it but would love to hear from you what it is and how it still works or not?
Hi Tim. Caverject is a trade name for the medicine alprostadil which inject into the cavernous tissue of the penis & it then creates an erection, bypassing all the nerves etc which no longer work following surgery.
It works well for me & it’s not as horrific as it sounds. The needle is very small in diameter and the result is that a small prick makes a big prick! It’s great to sit back & watch it grow
I had assumed you’d tried all the usual avenues, but maybe not. I have a vacuum pump & use it daily. I have Cialis tablets to take twice a week to promote blood flow to the damaged nerves. And the Caverject
If you haven’t got these, speak to your doctor. If I can help any more, please let me know. Finally, as others have said, implants should be used a last resort when all else had failed. Good luck, Neil
Hi I know where your coming from i live on my own and due to ed i am reluctant to get involved with a lady even though i get hinted at about asking ladies out ,You do become isolated .Does any one have any ideas about the cost of the implant .Thanks
Tim, I agree with Berkshirebear. One of the most important items men forget to include when asking questions about Prostate Cancer issues and how to deal with them is YOUR AGE. While I am certainly not an expert and don't pretend to be, I am a 24 year PC survivor having had surgery, radiation, and hormone treatment via Orchiectomy (testicles removed) and a facilitator at our local PC Support Group. The other options suggested by Berkshirebear do work for some but not all. Vacuum pump worked for me, but was uncomfortable and not the same, especially for my wife. Viagra did not work, injections did. So keep trying and good luck.
Thank you Sir I really appreciate your fyi and support here!
Hi ng...after your testicles were removed, did you have any further hormone therapy...and any side effects?
Hey billy1950, just to add a info as to why I had my testicles removed instead of injections or pills for hormone therapy. At the time (1994) I was told I needed hormone therapy my health insurance would not fully cover the injections and they were very expensive, so I choose to have an orchiectomy. That procedure was considered "minor" surgery but for any man it is a "big" deal as it almost totally eliminates the testosterone, and takes away some of one's energy and "feelings" of "being a man" but is the best way to starve the cancer and it is a one time procedure, versus periodic injections of hormones which take away a % of testosterone but not quite as much. The biggest side effects I had were very frequent and sometimes severe hot flashes along with somewhat loss of overall energy as well. On occasion I had 1 or 2 per hour depending on the day and what I was doing. BUT....., NOT EVERY ONE HAS THEM AS SEVERE AND AS OFTEN AS I DID, at least according to the different doctors I saw in regard to them. Unfortunately I had those hot flashes for 18 years and tried various drugs with no luck in order to eliminate them. After putting up with them for that long, and having NO signs of cancer and no rise in PSA for those 18 years, a urologist told me he would be willing to put me on a monthly testosterone injection if I wanted to give it a try. He said my PSA would be monitored every 90 days and the dose of testosterone would be gradually lowered to a point that stopped the hot flashes. Another huge benefit was much of my energy, appetite, and sleep pattern improved. So, as of now, having PCa at age 52 and TAKING CARE OF IT, I am now 78, in relatively good health. Good Luck whatever you do.
Thanks ng...18 years congrats! since 1994 a remedy for hot flashes could possibly be available???
...I am assuming then that your energy, etc improved after starting doses of testosterone. However, it seemed like a lot of time went by with low energy. Were you able to get erections?
billy1950, I have not been able to get natural erections since my radical open wound prostate surgery in 1994. Over the years since my surgery I have tried the pills with very little results, used the vacuum pump with OK results and even tried the injection in the penis once but that was too painful. I got an ugly erection but dull pain that accompanied it for several hours was not worth it. The surgery I originally had was not erection nerve sparing. My surgeon was one of those who because of the current statistics at that time showing nerve sparing prostate surgery was not as successful in getting all the cancer, he said if I wanted nerve sparing surgery I needed to find another doctor. Also, in the 1990s and up until the 2010 era, taking testosterone either by pills or shot was looked upon as being a no-no as testosterone feeds the cancer and still is not recommended for younger men for any reason like building muscles mass. The only reason my new urologist suggested it might be safe for me was the fact that I hadn't had any sign of new cancer OR rising PSA for 18 years and my age being 75 at the time I started the shots.
I agree with all of the above post. An implant is the absolute last resort to achieve an erection. Make sure that you have tried every possible recourse before getting an penile implant. I have an penile implant, am very happy that I have it, with no regrets at all, but it was my absolute last resort.
I had radical prostatectomy in 2005 and no erection but now I get a semi erection. I had tried the various pills, which had different side effects that I did not like, plus the pump which was a pain and the injections worked great but I just stopped using it, the one I like best is the cockring you can get a the sex store which I fine works the best.
But I am still cancer free.
Thank you James for your fyi and experience. I really appreciate your support and sharing.
All the best and even more,
Tim
Had open RP June 2011 after a failed da Vinci a month before. Surgeon issue another long story. But, after years of trying pills I finally settled at injections. They worked great at first but kept having to increase the dose over time. I finally graduated to a prosthetic cause everyone in my PCa group that had it, said they wished that they had done it sooner. That was about 6 men and I have yet to hear one guy have a negative remark on theirs. My issue is I had a lot of scar tissue which made it hard for the doc to insert the normal size. He had to insert a slim model. Now I am going in again this year for a larger to be inserted but will still not be what I had pre cancer. 3inch loss including the inch from when prostate removed. What I am getting at is yes, it should be a last option. However, if it is a possibility, don't wait like I did. Wife is happy. She could be happier.
I don't know who told you this, There are several altrenatives other than penile implant. Try Caverject (very expensive) or some generic form of the same. It works without the trauma of having these plastic devices in your penis.
Talk to your doc. about TRI MIX, it is a compounded injection, like Caverject, in fact Aprostadil is one of the three ingredients.
The cost is waaay less than Caverject. 5ml. costs me $85.00. I use a 20 unit injection, which comes out to 5 injections per ml. x 5 ml= 25 injections @$3.40 per injection.
Actually I recently found out that some docs start you on it early, after surgery.
I missed out on that, three and a half years ago.
This is an example goodrx.com/caverject.
Tri mix, peoplespharmacy.com/2015/05....
Do some research on it. You can even get an auto injector to put the syringe in, to not have to watch the needle go into prized possession.
If your doc. doesn't know about it, see someone else.
This is new to me also, but it is much better than everything else I have tried.
Good luck with your future recovery
Hi, there is one question that I didn't see asked, and that is how old you are. I ask because my surgeon explained that the age at surgery was a big factor in what to expect for long term recovery. I am currently 52. I had my surgery just over 5 years ago. I had almost no luck with oral meds, and hated the sensation of the injections. My experience with MUSE was unpleasant as well. I am on a disability check, so haven't bothered to try orals again, since I couldn't afford to use them anyway.
But, gradually, over the years, I had more and more success using an adjustable tension band, available in any sex shop. This past year especially. It took some practice to find how much tension was needed to attain an erection, and then I back off the tension because less is needed to maintain it. I like this because with a slight adjustment I can go from a raging hard on like I had as a teen, to something more gentle.
For the record, I actually attained an erection without assistance once last summer. It was an isolated event, but hell, I was floating for a week on that high.
Just wanted to give you another perspective. Good luck
Thanks so much Jude. Your kindness is much appreciated. 60yo.
Btw what is MUSE?
My dear Sir, I too had the opeation , have tried all the ED "treatments" the only ones that work are the penile injections TRI-MIX, is one of 3 meds that will do it but it is a medical procedure (alcohol swab, streatch cock out, inject the right place, wait 5-10 minutes, hard, don't inject to much or your will have a painful erection that will not give over 4 hours. The penile implant has complications. Two of my friends have had it implanted 1) lost sensation feeling, reduced orgasm 2) took 2 x as long to have orgasm 3) One man had a problem with the resouver that holds the saline solution and it will not drain out of his cock , leaving a constant partial hard on 4) Their cock were shorted another INCH in addition to the INCH they lost from the PC surgery, Thus, their cocks were over 2" shorter. Not cool. The pump is painful. Etc. I have not found the answer. To me at this stage, I have not had sex in over 5 years with anyone. If I found a man who was relationship available, I would make it work. I go to the gym 3x a week keep myself in shape which helps dramatically to boost the sexual libido. If you want to talk more about this off line, let me know
Hi vituviusman,
I am 13 yrs. out from radiation therapy...sometimes can get hard but doesn't last long. Single man so I am not looking for any meds to prolong erections. I would like also to be intimate with another man once in a while...is it happening for you?
How nice of you to ask. I perceive you are a very nice man. No it has not happen for me. I tried the ED med, the tortuous pump, and the injections. The injections were the only things that worked, and there are side effects of it, bleeding, bruising, had a hematoma (blood bluster), gave it up after that. I do have intense orgasms but no erections and of course the male fulfillment of shooting sperm is over. We are built to deposit and shoot sperm. It is like building a building and not finishing it or running a marathon and stopping right before you win at the finish line .
Makes good sense...I like your imagination! Basically dry orgasms too...
Yes, Dry orgasms..feels very strange....In some way I feel emasculated.. Am I alone in feeling like this?
No you are not. I was aware the surgery would eliminate ejaculation, but honestly, it is the thing that bothers e the most about it all. Even more than needing injections to get erect.
Yes Mr Vitruviusman I would like to talk more with you off line. We are both in alignment on a very similar journey. I go to the gym 6x/wk and having lost 90%+ of my sexual confidence; have not had sex in 4 years. Like yourself, if I found an emotionally available man I would make every effort to get to know him and date him if there was mutual interest. I really like your confidence and moxy!
Tim, hi same thing with you and Virtru...would like to find a guy in the same situation...has it happened?
Hi Tim,
I absolutely know how frustrated ED makes you feel.
I developed ED Post-Prostatectomy in 2004 and was not at all satisfied with Treatments such as PDE5 Inhibitors (Viagra, etc.), VED (Vacuum Erection Device), etc.
Finally, in 2007 I was implanted with the Coloplast Titan IPP (Inflatable Penile Prosthesis).
My Penile Implant completely corrected my ED and restored both my sex life and the emotional bond with my wife. I would do it again in a heart-beat!!
You can visit ColoplastMensHealth.com for valuable information on the Titan Implant, as well as, a list of highly skilled Implant Surgeons in your area.
Hope this has been helpful.
Bob
THANK YOU, BOB!
ED Management: Trimix vs Sildenafil
Anti-depressants (Sertraline) and ED support pills (Tadalafil)
Update, 21yo ED
Tim, We really need more of your story to help you. Penile implants are typically the last choice. What else have you tried? There are vacuum pumps, viagra/cialis, muse, and injections which typically are tried first: what were your experiences with them? Also there are a few ED specialists who sometimes find treatable conditions that your average doc will miss. Have you seen one?
Note I'm not negative about implants, they work fine for several friends. It is just a rather expensive and permanent solution, so all other options should be explored first. Tell us your whole story.
Thanks BerkshireBear for your reply. Cialis/Viagara have not helped nor has a cock ring. I will try the vacuum pump thanks
Injections work but only for up to 2 hrs and the anticipation of the needle puts me out of the mood but still it is an option that I often do not act on. What is muse? I will research an ED specialist yes for sure. Something needs to shift in favor for me with the ED and again thanks for your help.
Talk to your doc. about TRI MIX, it is a compounded injection, like Caverject, in fact Aprostadil is one of the three ingredients.
The cost is waaay less than Caverject. 5ml. costs me $85.00. I use a 20 unit injection, which comes out to 5 injections per ml. x 5 ml= 25 injections @$3.40 per injection.
Actually I recently found out that some docs start you on it early, after surgery.
I missed out on that, three and a half years ago.
This is an example goodrx.com/caverject.
Tri mix, peoplespharmacy.com/2015/05....
Do some research on it. You can even get an auto injector to put the syringe in, to not have to watch the needle go into prized possession.
If your doc. doesn't know about it, see someone else.
This is new to me also, but it is much better than everything else I have tried.
Good luck with your future recovery
Hi Tim, if you are uncomfortable with needles, you may want to try an autoinjector such as Inject-Ease. I just started using one with BiMix injections and it is very simple to use. They are OTC and you can google for prices.
ambimedinc.com/inject-ease/
Thank you Mr Prost for your fyi. I do appreciate it! Like very much your sugg of the autoinjector and will order one. How has BiMix served you better than the TriMix?
Again thanks so much,
Tim
I am really a newbie (1 week) on injections but just trying to put out my experiences.
I have only had TriMix once and that was a low test dose my urologist used in his office to see how injections would work. It gave me my first semi erection since prior to the surgery which was great. Unfortunately, it hurt like hell. So he prescribed the BiMix which has worked well so far, albeit have only used it twice but with absolutely no pain. I am updating my injection experiences in another post, "TriMix vs. BiMix" I think...
Thank you Prost and look forward to your next post re tri vs bimix.
Take good care
Tim
Hi Tim,
Update on BiMix experience:
1st time I used 10 units, partial erection w no pain.
2nd time, used 15 units, not quite as good result but possibly from bad aim with the injection.
3rd time (today), used 15 units again but was more careful w my aim, GREAT results,very close to a full erection, especially with the help of a cock ring. I was able to masturbate to a dry orgasm but boy did it feel great stroking with an erection! Yahoo! I have renewed vigor looking forward.
BTW, I read that MUSE is a "suppository" version of alprostadil, essentially a gel tab that you put down your urethta (the eye of the pocket snake) and it dissolves into the same membranes that the injection shots go to. Supposed to be for men who don't like injections. Sounds more painful to me, lol.
Good luck with whatever you try...
Mr. Prost (Dave)
Huge thanks there Dave.
Will try the cock ring to get better results.
Where do you reside?
Tim
I live in Southern NH. Married for 31 years with a lousy sexual partner so went the masturbation route for many years, got divorced and developed prostate cancer, probably deserved it, lol... Anyways, had the little bastard out and came out of that with some doubts but, as you can see, am trying very hard to enjoy my life with excellent results lately. If I can do it, anybody can...
Dave
Well Dave you are one (I mean Big
little trooper.
Thanks for your fyi and inspiration.
Keep on truckin lol
Tim
Hi Tim,
I hope you didn't suffer too much since your surgery was in 2014 and that you find some relief from the ED. Luckily, and with the fine dedication of some individuals, there is plenty of support and information in forums like these. I was kinda worried when I couldn't even get a twitch from the little fella 8 months post-surgery, thought there would be something. I tried Viagra but it did abolutely nothing. Then I started doing more diligent research and injections sounded like the most promising avenue and so far it has worked very well. I hope the injections won't lose their effectiveness over time. I will also do more researech on the use of cock rings, they seem to help a lot as well.
I will probably try generic Viagra (Sildenafil) in conjunction with the injections. My insurance company has already denied the need for Sildenafil as it was prescribed for ED. In my opinion, it should be approved to help recover a bodily function post-surgery. My urologist prescribed it and I can get it from a reputable pharmacy but have to pay retail, still not too bad. It's to be used at 20mg three times a day to help expand the blood flow in the penis. It can also be used for intercourse with a higher dose. Still have research to do on this.
Most of these treatments are steps on the road to eventually getting back natural erections, at least on the physical side, by getting blood flow to increase in the artery running through the Corpora Cavernosa, essentially the pockets that fill with blood to cause an erection. This is the area the BiMix injections go into causing them to enlarge and allow blood to flow in. (I am not a docter but I play one on TV)
flspinalcord.us/deep-dorsal...
Although I'm extremely pleased to be cancer-free, I look at getting erections as a quality of life thing.
Sorry to ramble but just putting some of my experiences and what I've found on paper.
Dave
Update after BiMix 4th day experience:
Did the 4th dose (15 units) of BiMix today, did not work quite as well as the 3rd, but still pretty damn good. I'm beginning to think that the location of the injection is at issue. The first injection (10 units) was on the right side (decent erection), the 2nd (15 units) was on the left side (no improvement), the 3rd (15 units) was on the right side (great results), and the 4th was on the left side (not as good as the 3rd). The right side has had much better results. Not sure why...
UPDATE - 5th injection
I tried using 50mg of Viagra along with 15 units of BiMix, same result as before. I have tried Viagra alone with absolutely no stirring...
UPDATE - 6th injection
I upped the BiMix dose to 20 units and things continued to improve. I'd say I got about a 90% erection, eureka! Gotta talk to my ED Urologist to see how much more is safe...
UPDATE - 20 Units
Used 20 units on the right side, good results. Used 20 units on the left side, okay but nowhere as good as the right side results. Enough experimenting to think that the nerves on the left side were damaged more from the RP surgery than the nerves on the right side.
UPDATE - Knicked Urethra
I injected the right side and felt a little pain. Within a few minutes, there was a small amount of blood coming out of my urethra. Also, my erection was nowhere near what I managed before so I probably perforated my urethra and injected most of the BiMix into it. Masturbation was painful so stopped. I read somewhere where you shoud press the needle in until you "dimple" the skin. I probably used too much pressure with the auto-injector and it pushed in too deep. I'm going to back off the pressure and also look at shorter syringes (5/16" instead of 1/2").
Not expensive, its actually covered by medicare and many other insurance plans.