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Year Of Firsts: Your Experiences
Prostate Cancer | Last Active: 3 days ago | Replies (15)Comment receiving replies
I'm going to be perfectly honest, watching this video drove me off a cliff then yanked me back up it and drove me off again. While the information is good and to the point, the statistics he laid out seriously messed with my head.
Up until this point, based on my own reading of numerous papers, I figured ED was something I was less concerned with than incontinence. After months of preparation I believe incontinence will be controllable and now ED is on my mind. This video almost goes to great lengths to say "well, you are screwed no matter what". I'm < 60, so I'm in that preferred group but it's a tiny percentage that function without meds, tinier still are those that function naturally after surgery and then there's that bullet of "well if you are lucky enough to get an erection after the catheter is out then it'll go away and you'll build up for 2 years". All of that and it's already heavily presumed by my doctor, based on the MRI, that half my nerves will be lost.
I had a total meltdown after watching this and even considered canceling my surgery (just 4 days away) and figured that I'd rather have quality of life over no quality and instead quantity of life. It's not just me, my wife also suffers this agony.
This is a good and informative video, but it hit me hard enough that I've not been able to eat all day and am hanging on by a thread. Reality is brutal, but Jesus, that's too much reality for me to deal with. I've been hanging on by a thread already.
I'm hopeful, but not nearly as much as before this video. I went from 25% hope that I would be "one of those guys" to 1%.
Replies to "I'm going to be perfectly honest, watching this video drove me off a cliff then yanked..."
I’ve seen Dr Mulhall in person several times since I had SBRT and while on ADT. He was the most honest doctor I’ve dealt with and the only one who didn’t give the false hope so many of the other doctors gave me re sexual recovery. He was, for example, the only doctor to tell me 25% of men on ADT never recover their testosterone when they stop and most never go back to baseline. This scared the sh*t out of me and I expected the worst. But, three months after stopping Orgovyx, I’m almost back to low normal testosterone and am functional enough for masturbation with 20 mg of Viagra and for sex with 100 mg.
Dr Mulhall WILL get you functioning sexually in some fashion if you follow what he tells you to do even though, early on, it’s more work than fun.
I’ll probably be on Viagra forever and the dry orgasms bother me WAY more than I expected they would. Most times I deal with it OK by talking it out with a therapist or enjoying sex for what it still is and not what it was, though it did crush me when a partner thought I was “faking it” because there was no “evidence.” That infuriated me and I took a triple dose of Ativan just to shut my brain off for awhile. I know that wasn’t the most mature way to react but that was a setback for me not a regular occurrence.
I also stopped watching p*rn because instead of helping me it just made me see all the stuff I can’t do anymore and left me feeling sad and empty.
If I stay involved in hobbies and especially my volunteer work my life, though diminished, is still mostly worthwhile.
Good luck to you. It sounds like you’ve chosen the surgery path and I hope it works out well for you. Give yourself some grace and kindness. You’re going to go through all the stages of grief: anger, denial, depression, bargaining and acceptance not necessarily in that order and some more than once but, like any grief, it gradually diminishes but never fully disappears.
Hey bud, I was 64 when I had my RP. My wife and I had an active, robust sex life and all the articles and videos said that if you have a healthy sex life B4 surgery you should be OK afterwards…BULL****!
I too, knew that one nerve bundle was a goner and I told my surgeon to “get the cancer, don’t worry about my erections”….I was THAT scared of the cancer.
But In the back of my mind I smugly believed that I would be able to function no matter what; that I would find a way. Unfortunately it didn’t happen, but I was continent and I would take THAT over sex every single time. I tried different pills but nothing worked; was about to use Trimix injections when the cancer came back. It is amazing how quickly your priorities can change!!
I was quickly reminded of what I had told the surgeon: get the cancer, don’t worry about my sex life.
Because this cancer is serious shit and it can KILL you.
I wish you the best on your procedure and hope that luck is on your side; my results do not reflect what yours might be. But keep your eye on the ball, OK? GET THE CANCER and worry about the minor details later; sex is a wonderful thing but living is even better…
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I'm so sorry. That wasn't my intent at all. I thought the information was the most thorough I'm found so far and would be of use to you. In particular, I found his information on the recovery time required after surgery to be particularly hopeful to me as he explains why it takes 18-24 months for so many guys to recover, which for me was actually a positive. Again, I'm sorry it upset you. Best wishes.