ED after 16 months and counting - I'm pissed

Welcome to the forum Airborne72

I am sorry you have had complications. I'm not sure I agree 100% with your lawyers opinion on the basis of what you say. This aspect cannot be making your recovery from surgery etc easy for you.

I am sure some other guys with ED will reply with some helpful advice. (I'm one of those without ED at present, so can't recommend much on the basis of my own experiences)

Perhaps you could post some of your stats (gleason score grade etc) as well as your PSA, (ie a Signature) as that info will help explain your total situation a bit more.

And you are not the only one who has confronted by the frustration. And ED isn't the only thing the guys at HW get frustrated about.

It often seems like it is, or was, a straightforward choice between:
Option one cancer and no side-effects such as ED.
or
Option two side-effects and no cancer.

But it is not quite so simple.
Yes a functioning penis is an important part of your quality of life, but cancer affects your quality of life too, and can definitely after the quantity.

When I got erections after surgery, but then also got a PSA test or two that said I still had something growing in me I can assure that that didn't make me feel too good either.

My view was that untreated PCa wouldn't necessarily have killed me, but it could have, but it also most certainly wouldn't have made me better as the years went by.
I was diagnosed at 48 and my dad lived till he was 95 which is almost twice 48. Now I reckon that if I have the possibility of living as long as my dad, but with side-effects, then that might not be too bad an outcome. I might be able to do a lot in 48 more years.

Alf

Hey Airborne
Welcome to HW.
Your stats and mine are so close it's scary - except I have the added enjoyment of incontinence to go with the ED.
Injections work. Period. If you have tried everything else (pills and pump) ask your doc for a prescription. Having an occasional hard on will help you physically and mentally.

The franktalk.org site listed above in Paul's signature is great. Lots of good discussions and advice that really should not be printed in a family website. Go for it.

Jeff (the leaking one)

I agree, start the injections. Not too pleasant in the beginning but it jumps starts everythign down there!! Good luck!

Hi Airborne,

I had open surgery at Johns Hopkins late June 2010 at age 52. 27 months later I still have ED. Viagra, et. al., do not produce a usable erection. Trimix does, but I have developed fibrosis. Whether it was caused by the Trimix or something else I don't know. Very depressing.

I truly appreciate everyone's comments.  I quickly tried to figure out how to list my stats below my post like everyone else, but I am apparently chat room challenged!  Anyway, here they are.

My PCa was discovered during a routine medical exam in Feb 09.  I was, and still am, considering spinal fusion.  When my spine surgeon recommened surgery I thought it best to have a physical since I had not had one in over 13 years.  During that 13 year interim the PSA blood test was invented and that is what indicated that my PSA was 17.  Doc told me to chase this rabbit because it was life threatening; the back issue was a quality of life issue - and still is.

DRE was normal.  Biopsy showed cancer in 7 quadrants, all of which were Gleason Scores of 3+3 except one was a 3+7.  I got three separate opinions and each urologist recommended the robotic prostatectomy.  After review (mental anguish) I opted to go with the most experienced and mature doc (2,000 procedures with Davinci).

According to him the surgery was successful with no evidence of spread.  Subsequent blood tests (Aug 09; Feb 10; Jul 10) have all shown PSA as non detectable.

However, a piece of plastic was left in my bladder and subsequently migrated through my ureter and caused scar tissue.  During that time I was religiously following their "penil rehabilitation" regimen and I truly believe that is what aggravated the issue and caused even more scar tissue.

Long story short - my use of prescriptions has not worked.  I have little trust in the medical community because I feel as if I was an "ideal" candidate for the state of the art Davinci procedure and my nerves/blood vessels were not spared.

And, to the heart of the matter, I am feeling strongly that the doc's are quick to cut and even quicker to prescribe solutions.  Medical science has vastly improved its ability to identify cancer, but what happens after that is still a crap shoot.

I say this knowing that so many have experience otherwise (personally, relatives, friends, etc.), but if I had this all to do over again, I would have opted for watchful waiting.  My life has changed radically, and I often question medical technology and medical practice.  I walked into a urologist's office with a PSA of 17; physically fit and only 58 years old.  Did he automatically categorize me? 

Believe it or not, I had absolutely no urinary issues. This whole thing hit me from the blind side. However, after the surgery I am now the "old" man in the restroom who takes so long to pee and who moans and groans.

I did suffer from incontinence for a couple of weeks after surgery and that really was humbling. Men + diapers = failure. Thankfully, that resolved itself. However, my ED still persists. Guess I should count my blessings, but my self-esteem and male pride don't see it that way.

What is trimix - a prescription drug or what?

Airborne: Worried Guy has it right. I must say when you get frustrated enough with the pills jump into the injections. It really is much simpler than you would thing. Some guys like my friend Worried Guy is scared of needles. I on the other hand dont even think twice about it. Pop and Go.

The fun out weighs the fear by a long shot! You do need a prescription there are several different joy juices. Caverject, Tri-Mix, Bi-Mix and Quad-Mix. Each has its advantages. The Uro whould almost always give you a practice run in the office to make sure that it works for you and to teach you how to use it.

Hope this helps. I can tell you it is the one thing that made me feel like a Man again.

Cajun Jeff