newcomer, ED questions

Nice to find this forum. I'm 50 years old, was diagnosed with pc in June: psa 4.9, T1c with a gleason 3+4. At the end of July I had radical prostatectomy (davinci). My labs showed negative margins, and my gleason was downgraded to a 3 +3. All good. A horrible experience I'm still processing, but I have a wonderful doc, really world class, and he assures me I'm going to get to live a long time and die someday of something else. My recovery has been smooth. I'm in good shape and have always been an athlete and have resumed all activities. I was mostly continent by 6 weeks, a few setbacks associated with fatigue, but now I don't even think about it and haven't worn a pad for some time.

My questions have to do with ED. At four weeks post surgery, without much prompting, and to my astonishment--my unit hadn't gotten much bigger than an acorn by that point--I got about a 60% erection. Hurrah! But since then, I haven't been able to quite equal the performance. My doc has me on a daily 5 mg cialis, with a 20mg once a week. His stated goal for me is to get a full erection with the drugs as soon as possible, and without drugs in a year. He's given me MUSE, both 250 and 500, and so far this hasn't done much. I get some enlargement, but no real lift off. (I do have orgasms, though I find them weird.) I use the pump every day to keep the tissues healthy, and this works, though it's uncomfortable. (I haven't used the rings yet.) I am beginning to think some of this is in my head -- my first (and only) erection arrived when I had no expectation of getting one. Now it's all I think about. Before surgery, I was somebody who never had any problems in the erection department, and my libido was like a huge dog on a leash pulling me through the park. This, too, has waned substantially. On the upside, I should add that I have a great marriage, and my wife has been incredibly supportive in every respect through this process. I'd say our marriage is even stronger for all of this.

Maybe I'm just looking for a pep talk. I know many prostate cancer survivors out there wrestle with much worse stuff, and at three months post-surgery, I should be patient. I'm continent, I had negative margins, I survived. But sexual function matters a great deal to me, as it does to everyone. My doc also tells me that 60% of his patients like me--age, degree of disease, type and success of surgery--are able to get a decent erection by this point. I feel like I'm falling behind the curve. Would love to hear some thoughts. Thanks.

Welcome to the site that no one really wants to join.

At three months you're still healing.

Try the other two pills to see if they make any difference. Odds are your URO can give you some samples.

Then there are Timix injections that work on most guys most of the time.

Pills didn't do anything for me but Trimix does...

It took me about 8 weeks to get any swelling at all. I used a pump from 3 months until about 5 months and was able to achieve penetration with a ring in place. At about 5 months I was able to have sex with no aids however did use generic Viagara occasionally. After about 1 year I was enjoying the same sex life I had pre-surgery but with less firmness. Today, about 2 1/2 years out from surgery things are back to normal, no drugs or aids and things get pretty firm...the trend here is that things do improve but its a long process, be patient, it will come.

You can look at my husbands post that he posted(impotence and no urge) and you will see where we are at. You are still real early in recovery and also hvc you are too.  Dont give up on the penile rehab. My husband has been at rehab for almost 4 yrs, and right now we are still hopeful that an natural erection might happen. We are just now getting to the point where maybe an implant might be the answer. Scot really does not want that,,but we are to young and to happily married to give up on our sex life.

Thanks for all the responses. This is a test of patience and faith, but what isn't. This Thanksgiving, I'm thankful for: 1) my skillful, confidence-inspiring doc; 2) negative margins! good labs! 3) my baseline PSA; 4) continence!; 5) some signs of manly life in the southern hemisphere; 6) my friends, who all stepped up and took good care of me; 7) my family; 8) my amazing, amazing wife. Some days it doesn't seem like it, but I'm very lucky. Thoughts and good wishes to all of you undergoing this challenge. Happy Thanksgiving to all.

Notsostiff: Thanks for your reply. An encouraging story. Bless your wife. I look forward to pouncing on mine. Being very dutiful about rehab. Seeing some marked improvement this week in fact. Not sure what the term "spontaneous erection" means, but if it means responding to your mind, not direct stimulation, that has started to happen. Takes a bit of concentration but it's definitely there. Significant increase in size and some lift. It actually works better than direct stimulation for some reason, probably because it allows me to take my mind off getting an erection. I then use the pump and with only a few pumps and the little guy is up. Thankfully, after twenty years of marriage to a woman who never ceases to ignite my rocket, the memory banks are full of good stories to recall. So, baby steps, but steps. Any improvement at all seems to make it easier to get more improvement, because my head is in the right place. For a while there any attempt left me feeling worse, as in, "Look at this pathetic thing. My nine-year-old has a bigger unit than I do." Now I feel more confident.

Golfnoch: Thanks to you as well. Have to say, I'm not that excited about Trimix either; sticking a needle in my Johnson seems like one more indignity forced upon it. And yet, if my doc says give this a whirl, I will summon the courage, and would of course be very happy to see it in action, since I hear it works. I'm wondering: have you, or anybody out there, tried MUSE? I've used it a couple of times without much to show for it, though my doc is very confident in it and has told me to keep trying. He upped the dose from 250 to 500. The first time I used it, I was pretty freaked out; seriously, putting something into my urethra? Are you joking? I feel like from the minute I came in with a high PSA, somebody's been putting something in through the out door.

I didn't read all of the replies so I apologize if I'm repeating the advice of others. You really need to watch the three video links that were provided. Also, a VED pulls in veinous blood which is very low in oxygen. You need to get some oxygenated blood from the arteries into you corpus carvinousous{SP?) to help keep it healthy while you heal. You can do that by starting injection therapy with trimix being the most common drug. MUSE only works about 20% of the time. Trimix works 90% of the time, and I will say in your case it will work 100%. The pain you imagine that you will have is a whole lot worse that the real pain from a very small needle that comes from injection therapy. It takes two years to fully heal and some studies have shown that you get more healing the last year than the first year so be patient. Lastly the joy you will get with your wife using trimix is surely worth a little prick to make a small prick a big prick.

Thanks. It's possible there's some Trimix in my future. On an encouraging note, in just the last few days, I've started getting good response--first with MUSE, and then without. Hooray. Not all the way there yet, I'm about 60 percent, but at four months post op, it's very encouraging.