Penile Rehabilitation

[MIDBOB293]

Maybe this is the spot where I feel comfortable commenting on my status and asking a question. I really want to note success with penile rehabilitation after radiation treatment and see what success others have had. My welcome post tells of how I got to this point after radiation and seed implants. I had great success with Viagra at age 74 a year ago prior to starting treatment. Once a week regularly and twice a week not uncommon. Prior to treatment, erection was good, ejaculation good and orgasm great. Post treatment I found erection minimum and not long lasting, and ejaculation dry and orgasm not much. I read about penile rehabilitation and started Cialis 5mg daily over 4 months ago and found slow but steady improvement by using Viagra for the sexual event with my wife. I am back to weekly now and erection longer lasting most of the time, ejaculation still dry and orgasm somewhat better but my ability at age 75 now is not remotely as good as it was a year ago before treatment. I am very disappointed that my cancer doc did not even want to talk about ED and told me to see how it was at my follow up visit later. I find that fantasy thoughts with my wife participating and oral and sometimes masturbation to finish up at times has helped significantly. I do have some pain when urinating but not too bad. I am hoping that I continue to improve over coming months but I find a disparity in articles about Ed following treatment. Some articles say ED following radiation starts slowly after treatment and continues to increase while some state it differently. I am finding that I am improving over these post radiation months. I am having difficulty figuring out where I am on the scale of doing great or not so great and whether I should see an urologist specializing in ED. My cancer doc is obviously not much of an ED source. Anybody have any comments? Thanks.

[antelope]

Hey MIDBOB,

What a story! Thanks for sharing. No doubt others on this site who have gone thru cancer treatment will have more insight than I do about that part of it. My ED is driven by diabetes, so our circumstances are a bit different. At the same time, a limp noodle is a limp noodle. I did try varying combos of the pills without any substantive results. It seems you're having a bit of success with the pills, so that's good. For me, the silver bullet proved to be Trimix injections. Perhaps that is something you might consider. Certainly, I think you should visit a competent male urologist. I don't have any problems with female doctors; but I think I want whoever is treating my hoohoo to understand what a hard-on feels like. Just sayin'. Good luck and best wishes. Keep us posted and drop by the chat room when you have a chance. that rowdy bunch will make you laugh if nothing else.

Greg

[MIDBOB293]

Greg: Thanks for the reply. How do you tell if anyone is in the chat room? I tried it but found my post showed up but could not see anyone else there. Perhaps it was empty? Midbob

[antelope]

If anyone else is in the CR, their screen name will be listed in the box in the upper right. If that box is empty, then you're the only one there. Whether you find one, none, or 15 guys depends on the time of day you check in. I can usually find some of our FT buddies after 8:00 or 9:00 in the evening. And sometimes it's totally random.

One thing you can do is log in to the CR, then go on about other business if no one is there. As soon as someone shows up, you'll hear a "ping" that announces their arrival and you can open that screen back up and say howdy. Many of the guys are much more expert than I am in the CR. Maybe they'll chime in. Guys?

Look forward to chatting with you soon.

G

[regain-is-the-aim]

Midbob:

Welcome to this clan. I am PCa but with robotic surgery and the resulting ED. The docs are mostly out-to-lunch on the ED stuff. My surgeon was brilliant but cared little about hard. And I didn't get as focused until I joined FT. This is a good place. Hopefully, over time the Foundation we have formed can have an impact of better care and improve outcomes for most of us.

We are all different and it is difficult to place our selves and our progress on any real accurate comparison graph. I am very pleased to hear you are making progress. I am coming to the conclusion any progress is good, usually inconsistent, but being headed up and out is a good thing. Keeping at it is important. Using him often is important and keeps everybody down there thinking. The radiation does harm nerves and in a different way than surgery but there is science which indicates that nerves can, at time, heal themselves to some extent. If I were you, I would consult with an MD specializing in ED. It wouldn't hurt and his/her thoughts may assist you in making additional progress. The sooner we address our ED issues the better chance of an improved outcome.

With what I have learned here I am still making some progress almost 5 yrs post-surgery. And, I INTEND to make additional progress over the coming years. Penile Rehab is fun!!

Regards,

Dick

As we all know this is tricky but keep at it and keep us posted as to your progress.

[MIDBOB293]

Just wanted to update my status. ED is about the same, Cialis for rehab and Viagra for activity. Erection ok but not long lasting, ejaculation dry, sensation not great - still trying, better than it was two months ago - I think. Good news in that 3D color Doppler ultrasound found no trace of cancer 10 months after seeding. However, some pain over past 60 days when urinating, the ultrasound found what appears to be a calcium deposit at one seed that has inflammation. Now on 30 days of Avelox. Also lab shows very low White Blood Count of 2.3. My WBC has been low (in 3's) for long time but neverthis low. WBC should be up in fighting the inflammation. Red Blood Count and other lab results ok. I have read where radiation can drop the WBC but nothing definitive. Anybody have any post seeding issues with low WBC and painful urination due to inflmmation at a seed?

[capybara]

I would definitely suggest seeing doctor who specializes in ED issues. Many urologists aren't really that interested, and don't have the time. Many major university hospitals and cancer centers would have someone.

[PhilipS]

My doctor was also not interested in helping me recover after the surgery (3 1/2 years ago). He wouldn't let me try the shots, but that's ok. He did give me Muse, which worked sort of, and also Tri-Mix gel. The problem with Tri-Mix gel is getting the medicine inside your urethra - it tends to squirt out to the side instead of going in. At any rate, both these drugs are too expensive if you're going to need it twice a week. I use a pump, which works as well as the drugs and is way cheaper. Some guys use the pump for rehab, just pump it up for a while every day, but I read that this doesn't help that much because you need arterial blood (with oxygen in it) and the pump pulls in venous blood which is already spent as far as oxygen. I chose a therapy which is on the internet as penis enlargement exercises. It's called "Jelqing" and I couldn't say it has enlarged my dick, but I haven't lost as much as I've seen others report after RRP. I try to do it for about 15 minutes every day. If nothing else, it feels pretty good.

[drjohn]

I had radiation therapy 4 1/2 years ago. At 64 and with low PSA, I was told that it was a toss-up between radiation and surgery - I chose radiation since I'm phobic about surgery and couldn't imagine having a catheter in me for days. I've had ED issues throughout my adult life, but when I discovered Viagra everything changed - great & immediate erections, could pop 2 or (on a good day) 3 times in a hour, etc. After radiation, things changed substantially. My old standby "blue magic" works intermittenly and unpredictably, I usually achieve orgasm, but minimal if any, ejaculation. Things have gotten somewhat better lately, but I've accepted the fact that it'll never be like it was. Some boot-leg "professional" Viagra from India seemed to work pretty well. On the other hand, I tried "extra strength" Levitra and that was a complete failure. The important thing is not giving up on yourself - it's all you've got.