Trying to get through...

What are your fears? Ideas? Hints? to coping with ED. What helps you with your mental game? How are relationships affected?

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Nocturne
Posts: 76
Joined: Fri Oct 28, 2016 11:59 pm

Trying to get through...

Postby Nocturne » Thu Oct 05, 2017 10:02 pm

I guess it still stuns me sometimes how far I've fallen in 2-3 short years. In May of 2015, I had it all, comparatively. Then came that first night of ED, followed by diagnosis of castrate-level testosterone, followed by a heart murmur that turned out to be calcific degenerative aortic valve stenosis, followed by a CT scan revealing coronary calcium deposits equivalent to a 75 year old man's heart (I was 42 at the time), followed by revelation of an Lp(a) level of 390 where 30 or less is the norm, caused by having two copies of a defective gene that raises Lp(a) and the odds of premature heart disease, calcific degenerative aortic valve stenosis, and ED. Oh, and now apparently I'm pre diabetic, with fasting blood glucose that rose ten points even as I lost over 50 pounds.

I have recovered a lot of sexual functionality, with the help of Clomid to raise T, supplements, weight loss, and low dose daily Cialis. But I know I am not where I was even three years ago and I know I will just keep getting worse until I ultimately need a prosthetic implant. Right now it is mostly just a loss of responsiveness and rigidity (spontaneous erections are a thing of the past, and I generally need manual or oral stimulation to get hard, and at my hardest I am almost always a little "bendy" and seem to feel less sensation than I used to). More subtly, sex has become a thing that is inextricably linked to anxiety and depression, instead of just being fun like it used to be. Even when nothing really goes wrong it often feels like it did, as I was so worried about not being fully rigid or feeling shorter than I used to that I didn't really get to enjoy the sex. Or worse, I will somewhat resent my wife for trying for sex at a moment when we knew there were likely to be interruptions (we have four kids), and an inevitable interruption occurred that cost me my erection and set me into an emotional tailspin. I have become a guy who sometimes is upset with his wife for wanting sex, and I hate that about myself. Especially since I basically left my ex wife years ago because she had too many sexual hang ups and resented ME for wanting it too much.

Part of me wants to just fast forward through these bullshit years and go straight to the implant. But I also worry about dying young and all the stuff I do to keep my heart beating is also stuff that is likely to prolong this period of so-so "OK" mediocre and unreliable erections.

Tonight my wife wanted sex while we were cooking dinner, which meant sneaking upstairs while food was cooking, while two kids were watching TV and two others were due to come home soon. So she coaxed me hardish in her mouth and of course the doorbell rings -- youngest kid gets dropped off -- an interruption. She lingers downstairs a bit to chat with the woman who was watching our youngest. Then she comes up and I ask if she turned the heat off the fish -- she had not. So I'm imagining the fish burning and can't relax, so I go down to turn it off and then come up back to square one or worse, knowing there will be another knock on the door any minute, not in the mood but feeling too guilty to keep from trying (because I don't want to be the guy who denies his wife or is, frankly, crippled and unable to have sex because someone knocks on the door).

And we had sex, and she came more than once, and so did I (once). But I felt too small, and too floppy, and constantly fretted about losing what hardness I had. Not that vigorous firmness from when I was younger, the kind of erection that would kick the door in and swagger into the house whether I wanted it there or not (as opposed to the doddering old man erection that needs to be guided in and helped up the stairs and then watched to make sure it doesn't wander off).

And the whole thing is a constant rubbing if my nose in the fact that I have massive arterial damage for a man my age and am likely to die young. Not a turn-on.

I feel like a miserable, grumpy old man and I am 44. I hate this.

I don't even know what kind of an answer I expect or want. Just spoke to a telemedicine doc who waived his usual consult fee because he found my condition to be "interesting", which was much appreciated but also makes me feel like kind of a sideshow freak.

"SEE! The heart-wrecked, limp-dicked WONDER MUTANT!!!"

Most of the time I am OK but at times like this I just want the damned Implant already. I know it is not time yet but I chafe at the decade or so it will likely be before I can finally have relaxing and fully enjoyable sex again. If I don't have a stroke first.

radioradio
Posts: 618
Joined: Tue Aug 09, 2016 2:44 pm
Location: Philly Burbs

Re: Trying to get through...

Postby radioradio » Thu Oct 05, 2017 10:46 pm

Wow, the hand you got dealt sucks!
I'm sure a lot of us can relate to some of the feelings you shared, but I can't imagine dealing with the health issues.
I don't know how to say this without perhaps sounding pretty shitty, but here goes....
Life in general is short, and your's perhaps especially short. I'd want to make the most
of it and not have to deal with the emotional crap that comes with performance anxiety and self worth issues. I think I'd go for it. Although I don't share your prognosis, it's pretty much the logic I used to make my decision.
Wish you the best.
Bob
2.2
Born 1952. Married '79. RALP 3/1/17. ED 50+% prior to surgery w/ meds. VED, Bimix, Trimix all ineffective for me. Looking into implant even before PCa diagnosis. Dr. Kramer 8/2/17. LGX 21cm + 0.5 RTE. Kramer replaced/repositioned pump 12/13/17.

David_R
Posts: 930
Joined: Mon Nov 02, 2015 1:03 pm
Location: Northeast Maryland

Re: Trying to get through...

Postby David_R » Thu Oct 05, 2017 11:29 pm

radioradio wrote:Wow, the hand you got dealt sucks!
I'm sure a lot of us can relate to some of the feelings you shared, but I can't imagine dealing with the health issues.
I don't know how to say this without perhaps sounding pretty shitty, but here goes....
Life in general is short, and your's perhaps especially short. I'd want to make the most
of it and not have to deal with the emotional crap that comes with performance anxiety and self worth issues. I think I'd go for it. Although I don't share your prognosis, it's pretty much the logic I used to make my decision.
Wish you the best.
Bob
2.2

I agree, brother.
Baltimore area. Age 68. Prostatectomy in 2000, CX inserted in 2002. Wore out after 12 yrs., got LGX in 2014. I am glad I had them both. My great urologist is Dr. Marc Siegelbaum. (After regular inflating I regained my original length and girth.)

antelope
Posts: 1339
Joined: Sun Nov 14, 2010 3:17 am
Location: Baton Rouge

Re: Trying to get through...

Postby antelope » Fri Oct 06, 2017 12:44 am

I can't begin to grasp the enormity of your situation, and I've had a few of my own. What I do know is that the odds are excellent that you can do something about unsatisfactory erections. My mantra was, "This is not an acceptable outcome." My advice to you is simple. As long as the quality of your erections is not what you want, "that is not an acceptable outcome." If your current regimen isn't working, maybe it's time to take it up a notch: injections. If still not, then implant. Go from less invasive to more invasive until you find the solution. In my view, that's pills, shots, implant. A lot of guys on this site have great success with pumps and cock rings--maybe that's something you might try as well. If you find that visual and manual stimulation help, use all of that as well. I'm told, ahem, that there are a lot of free porn sites out there. I'm not sure how much you can do about all your other medical problems, but I believe you can find a solution to your erection issues. Just get it done. All the best man, hard times to us all.
Born 1948, married 1969. BPH & Type II Diabetes at age 35. TURP-2002; Some ED even before that. Cardiac valve surgery-2007. ED from diabetes. Poor results with pills. Started trimix injections in Nov, 2010. Great results from the very beginning.

Nocturne
Posts: 76
Joined: Fri Oct 28, 2016 11:59 pm

Re: Trying to get through...

Postby Nocturne » Fri Oct 06, 2017 9:43 am

Thank you all for your kindness and advice.

Radio radio, THANK YOU for just coming out and saying that my situation sucks. I get SO TIRED of hearing people telling me "you'll be fine", "you'll live to 100", etc. I know they mean well but I also know they say it to reassure themselves as much as me, and in the end it can make it seem like they are dismissing my fears and concerns about my health as invalid, when in fact they very much are valid. It sucks having to admit that it sucks, but it is refreshing to hear someone admit it after all the insubstantial rainbows.

Which is not to say that I feel hopeless! At 44 an average man can reasonably expect another 30-40 years, and I am certain I can reasonably expect another 15-20 and maybe more. That is still a long time, and I know that the most stupid thing I could do with my remaining 15-20 years would be to spend them moaning about the 15-20 more I should have been able to expect but likely won't get.

And some of the studies I see online reveal a lot of hope that I have longer than 15-20 years. There is always hope.

But given the likely shortness of my life, I agree that wasting years waiting for an implant because I don't want to deal with multiple revisions might make less sense for me than others.

My fear is that I will wait ten years, getting worse and worse, and then be ready only to have a cardio doc swoop in and say, " nope, time for aortic valve replacement, and you'll need at least two years of non-functional recovery time before you can go for that implant, m'boy!" And then have a stroke.

I know that if I wait around for a doc to tell me it's time, I'll be waitig until it's past time.

Antelope. I am deeply touched by your sympathy. You have been through the wringer I see and in many ways have had it even worse than me. You give me a lot of hope - this whole forum does.

And you are right, "This is not an acceptable outcome" is if nothing else a legitimate and empowering attitude to have.

I think I need to talk to my wife and let her know some things. She is fantastic by the way and I am incredibly lucky to have her in my life; she balances out so much of the bad crap. She needs to know that I just cannot enjoy oral sex to orgasm anymore - slow sensual licking still feels great but once she speeds up I can no longer feel things right and get too nervous that I am losing my erection to enjoy the act.

And I need to remember, like you said Antelope, I have more control over this than I sometimes think. If it is not acceptable, it is not acceptable, and i is is time for a change in treatment. And I can make that happen.

Thanks again.

radioradio
Posts: 618
Joined: Tue Aug 09, 2016 2:44 pm
Location: Philly Burbs

Re: Trying to get through...

Postby radioradio » Fri Oct 06, 2017 1:58 pm

Nocturne,

Someone very close to me just had his aortic valve replaced (again), and I'm quite sure his cardiologist would not let him have elective surgery like an implant for I don't know how long. If an implant is in your future, far better to show up at the cardiologist with it already in hand, so to speak :lol: , than to find out it's out of the question.

And I agree that sometimes it's more helpful to hear acknowledgement that one's situation sucks than to hear that everything will be okay. People want us to be "okay" so that they feel less uncomfortable around us. I learned this after the loss of our son. For a long time it made me angry that everyone wanted us to be "all better now". But now I get it; it's just the way people deal with uncomfortable situations.

I hope your determination and communication with the missus bring you some relief and progress.
Bob
2.2
Born 1952. Married '79. RALP 3/1/17. ED 50+% prior to surgery w/ meds. VED, Bimix, Trimix all ineffective for me. Looking into implant even before PCa diagnosis. Dr. Kramer 8/2/17. LGX 21cm + 0.5 RTE. Kramer replaced/repositioned pump 12/13/17.

antelope
Posts: 1339
Joined: Sun Nov 14, 2010 3:17 am
Location: Baton Rouge

Re: Trying to get through...

Postby antelope » Fri Oct 06, 2017 4:23 pm

Three things:

1. Thanks for your kind words. You're welcome. That's why we're here.
2. Consider this: Had I been born 20 years earlier, I would likely have died from an aortal aneurysm at age 58 because they didn't know how to do the kind of surgery I had on my kind of patient at that point in time. Maybe if you can hang around 10 or 15 years, they may be able to grow you a new whatever it is you need from your own skin cells and replace whatever's not working with the new one. Trust me, they're working on that.
3. I don't understand the 2 year thing you mentioned. My medical team "discharged" me 6 weeks after my aortic valve replacement surgery. (That does not mean I never have to go back to the doctor. Au contraire! I see the cardiologist twice a years, the internist twice a year, the urologist once a year, etc. etc. It means I was cleared to go back to my LIFE.) At that time, I specifically asked if there were any limitations of any kind--from the board room to the bedroom. The answer was, "Nope, go make up for lost time." THAT was when Limp Dick Syndrome kicked in like the matsa fatcher it is. So we started on the "least invasive to more invasive" approach to my problem. We laid out the treatment plan and I would have been having implant surgery with 6-8 months after cardiac valve surgery if the injections did not work. Perhaps our cases are materially different, but I wouldn't assume a 2 year wait unless a cardiac surgeon told you that. And if he does, ask him if he would take whatever risk there might be or choose to be a neutered monk for 2 years. Certainly, I think if you needed surgery to remove a melanoma or a tumor or whatever, they wouldn't hesitate. WE know that a limp dick is emotionally and mentally just as life threatening as a brain tumor. Brother, that'll preach!

All the best. Hang in there. Peace and grace.
Born 1948, married 1969. BPH & Type II Diabetes at age 35. TURP-2002; Some ED even before that. Cardiac valve surgery-2007. ED from diabetes. Poor results with pills. Started trimix injections in Nov, 2010. Great results from the very beginning.

bldoink
Posts: 410
Joined: Mon Apr 03, 2017 12:58 am
Location: Fl.

Re: Trying to get through...

Postby bldoink » Fri Oct 06, 2017 7:16 pm

^^ :D ^^
R.R.P 2011 Mayo Jacksonville by Dr. Michael Wehle. Nerve sparing but damaged. V.E.D, Viagra and Alprostadil manually injected. Originally Edex20. Switched to Alprostadil from compounding pharmacy - cost. Injecting 5-6 yrs. It works. Treasure coast of FL.

robnine
Posts: 40
Joined: Wed Jun 03, 2015 4:39 am
Location: Inner city SYDNEY NSW AUSTRALIA

Re: Trying to get through...

Postby robnine » Fri Oct 06, 2017 8:52 pm

Those "You'll be fine/ Live until 100"commiserations are indeed horrible. And oif course, they come because people don't know what to say.. . . .
But they also have a component of "trying to shut you down" , inadvertently, of course.
I am in this situation myself with a recent bereavement, and some of the so-called helpful comments , from my closest long standing friends, felt like a rubber stamp or computer tick-the-box.
But places like this forum are where you will get real support, albeit, from total strangers, but with experience of at least a little of how devastating ED is.. . . .
I unloaded on FaceBook about my bereavement. My old friends thought I was stupid, but I found support from unlikely places, and inside my family too
I don't know your full situation, but if otherwise plausible, I would advise not to waste a minute of your sex-life, and get the implant done. ASAP.
You and your wife just love the naughty and slightly risky side of sex, and while it is true that you have to pump it up, you can do that, and make it as part of the sexy play, too..
Gay men had tro learn to use condoms in the 1980's. "Oh, but (staying alive) ruined the spontaneity".. . . .
One has to make many "lesser of two evils"choices in life, and turn any negatives into positives.. . . .
And in the unlikely event that any of us want to live until 100, you will still be missing morning teas because you ran off together to a broom closet at the adjoining nursing home.. .
Your sex life can be spontaneous when you have no worries about your erection...
AMS 700 Implant July 2015 Sydney Australia . St Vincent's Private. Dr L Carlo Yuen, and team including Dr Brenner. Excellent. It changed my life... . . .

geophd
Posts: 98
Joined: Sun Oct 08, 2017 11:08 pm

Re: Trying to get through...

Postby geophd » Wed Oct 18, 2017 4:04 pm

That is a tough deal. I feel so down about my own shit all the time so I can imagine what you feel like with everything in your life. I'm not what I was like 6 months ago and I'm only 27 taking 10 mg of Cialis and trying to stay hard. I hear you when you say that sex has become a stress instead of enjoyable. Losing that fun activity is shit. You probably don't like country music but there's a famous one titled: Live like you were dying. Find a jolt of energy and tell your wife exactly how you feel about sex right now and that you want an implant. Tell her it's for you because you loved having sex with her but your loss of function is taking the enjoyment out of it. Or do injections or higher dose cialis?

I agree with antelope, if you do not have an acceptable situation to you right now then keep exploring, try higher dose cialis (headaches/poor erection?), try injections (don't like them/don't work?), then move quickly to implant. The longer you're in this state the more long lasting negative mental affects you will suffer. It's like ED, the longer you have it the worse your dick gets, the longer your mind is fucked up over ED, the worse you self respect gets. I'd be stoked to read that you started attacking the problems you could in your life while you have it. We're all gonna die.
27
Peyronie's: 6 months, indents cause loss of 0.5 inches of girth, fibrosis growing, caused ED.
ED: 10mg Cialis daily, getting headaches, not interested in VED/injections.
Considering implant to avoid a lifetime of cialis and to correct deformity.


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