My Rapid Descent into the Living Hell that is ED: (and my first post!)

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Levelled
Posts: 1
Joined: Wed Jul 10, 2024 6:00 pm

My Rapid Descent into the Living Hell that is ED: (and my first post!)

Postby Levelled » Thu Sep 05, 2024 4:23 pm

Sorry in advance for the long-winded post...

I want to briefly journal my experience as, after seeing several doctors and reading many of these posts, it still doesn't "add up" (but likely a lot of that is denial, horror and shock at my situation), and I'm hoping that someone here can comment/give some feedback if aspects of my situation sounds familiar to them or if they have suggestions.

As some background, I was a pretty healthy man with a very high libido historically (I used to be an athlete for many years, I've never drank, smoked, did drugs or had any diabetes etc.). I would guess that my penis was probably above average as it would be somewhere in the lower 6' range to 7' range when excited, and it was always excited (for example, I'd pull my pants down and basically start getting an erection any time anywhere).

Sometime after my 49th birthday (a few months, but I can't pinpoint an exact moment), I noticed my penis had stopped acting normally, like it was just asleep. I saw my family doctor, several times and he was convinced that it was psychological. I doubted this diagnosis as I've never had that problem, ever, before, but I went along with the expert. He prescribed, sparingly, 20mg cialis, which I responded to fantastically and predictably, at least for a time. Rather than the 36hrs or so, I'd typically get about 3 good solid days and nights, and then experience a bit of an "afterglow" where my penis, while not normal, would regain some responsiveness for about 1-2 weeks. This all came to a relatively sudden halt after about 9 months. During this stretch of time, I frequently expressed concern with my doctor and requested to see a urologist, which he always responded back with you don't need to, it's psychological. Finally I put my foot down and he relented, making the appointment for me, and putting me on daily 5mg cialis (which I did not respond much to at that point and I was getting little to no responsiveness to the 20 mg all of a sudden). To be fair the 5mg gave good results for about 1 week, but then it was back to sleep. Also, the amount of loss of length and girth was absolutely horrifying, it was about 20-40% at resting state, and about 50-60% at erect state, which was hard to achieve any way.

Several months later, I got my first urologist appointment and it was a black hole as he said once you "go over the cliff", that's it, you're done for and he was recommending shots, which I had zero interest in. I was getting to the point of wanting to find the highest building to jump off of. My wife found a reputable(?) shockwave therapy clinic, run by an accomplished urologist who was using state of the art low intensity shockwave therapy (I forget which is which but it was the one that was supposed to work, not the gimmick one and it was a more up to date, "effective" one). I had a faint glimmer of hope, went through the full recommended treatment (6 sessions spread out, with a bonus 2 top ups, which my urologist didn't think I would probably need, but I wanted to throw everything at it, and then 3 months later, presto I should experience significant improvements...hopefully).

Well time passed and I was noticing little to nothing, except a couple of minor movements and maybe some minor nocturnal erections and while the resting state was horrible, I could, with serious help from my wife, get some usage from the regular 5mg (in other words, my 50-60% erection for a short length penetration, keeping in mind that I used to be able to go for hours, and now it was like in the 10-15 min range at best).

So the next, and last step was to pursue surgery. I met with another urologist, this time a surgeon, and he initially seemed to think it was a testosterone issue (it wasn't my hormones have always been excellent). After that result, he didn't seem too inclined to perform the surgery as I was quite healthy. WTF. So I'm left in complete limbo now with an almost non-existent penis?

Now here are my questions:

1) many people here say they had ED for years, but in a lot of cases it seems to have been a forever thing or gradual. Are there others who had the lights go out almost overnight?

2) even more people say that the medication worked for years before it stopped working. For me it was about 9 months to the day, which seems insanely short especially considering how well it worked initially. And the "effectiveness" I get from the daily 5mg is borderline pathetic, I'm not even sure if that counts as "working" at this point. Are there others who had this such short lived experience with the meds?

3) I've seen a lot of positive posts about getting a penile implant, even when people say they're getting like their third revision(!). Are there people who are not happy with their implant and wouldn't recommend it for someone like me? I feel like I should've gotten one much earlier now with the crazy rate of atrophy I've had (which is another question/issue as how did people manage the atrophy for so many years?)

4) Convince me I should/shouldn't get an implant. I need to get a "walking around" penis back for my psychological well being. I've already lost masturbation and sex is a nightmare, but I assume I will regain a semblance of productive sex as well. I feel like the doctors I've seen have largely done me a disservice and I need to get my information/help from this site for better or worse.

Thank you in advance for any feedback.

easymoney
Posts: 604
Joined: Tue May 09, 2023 10:28 am
Location: West Coast Fl.

Re: My Rapid Descent into the Living Hell that is ED: (and my first post!)

Postby easymoney » Thu Sep 05, 2024 5:17 pm

You were about the age many men start having issues .. I'm unhealthy .. started off and on in my early 40's fast forward to to about 2017 less and less erections both firmness and length of time in the saddle .. 2020 ..2021 ..only self pleasure and oral sex .. 7-2022 stroke .. 68 yrs old .. lost all libido .. 2023 the shots helped not at all .. implant Rigicon mallabble 6-2023 .. problem solved .. not sure of your age now .. bu you will shrink with age .. if your not using a VED on a regular basis you will lose size ..

Txagq8
Posts: 885
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Location: Texas Hill Country

Re: My Rapid Descent into the Living Hell that is ED: (and my first post!)

Postby Txagq8 » Thu Sep 05, 2024 6:07 pm

Convince you not to get an implant. Hmmmm.

Okay, you’re 49. The limited experience you’ve had with oral meds is a mixed bag.

You need a urologist. Not just any urologist. You need to see one who has experience in and knowledge of men’s sexual health issues. I’d love to kick a doctor’s ass when they say “it’s all in your head.”

Not all PDE5 inhibitors work on every guy. They need to try them all, in different doses. The fact you got some response (at least initially) is encouraging.

If you don’t try injection therapy, unless you have a medical condition that makes it unwise to do so, you’re a fool. I can’t put it any plainer than that.

My ED pre-dates oral meds by 10-11 years. Shots were all we had. There is a convenience concern but it’s a very natural erection. I was happy with the results for years and if the medication just hadn’t become less effective over time I might still be on them.

I was on shots for 32 years. I’ve probably jabbed a needle in my dick 5,000+ times. Ponder that before you turn up your nose at the idea. Every single time I did I ended up getting laid and there’s no such thing as bad pussy.

Before you get too carried away, here’s the bad news. You need s complete head to toe physical with bloodwork and maybe a stress test. ED isn’t just an ailment. It can be a symptom. They need to find out if there’s something going on that would cause a sudden onset.
Age 68. Physically fit educated red neck in Texas. Very married. 23 cm (18+5) of LGX installed by Dr. Bryan Kansas 12/31/2019. I fought the ED and my wife & I won. I’m either full of shit or sound advice. You decide which.

wolfpacker
Posts: 1127
Joined: Thu Dec 12, 2013 10:16 pm

Re: My Rapid Descent into the Living Hell that is ED: (and my first post!)

Postby wolfpacker » Thu Sep 05, 2024 6:44 pm

"Are there people who are not happy with their implant and wouldn't recommend it for someone like me?"

There are downsides of the implant, the biggest one for me is that it's just rather hard and uncomfortable in daily life. A nice squishy natural penis can be comfortably stored away when you're doing fitness exercise and whatnot but it's a lot harder to do that with the implant. Not impossible, but more planning/positioning and overall more uncomfortable.

But if you want to keep having sex and aren't willing to try injections, it sounds like you have no other choice.
Early 30s with ED for years from penis enlargement stretching and jelqing. Implant by Dr Eid on 24 June 2021 with a Titan 24cm with +1cm RTE on one side and -1cm cut off on the other side

My journal: viewtopic.php?t=17202

Martin6469
Posts: 605
Joined: Tue Feb 18, 2020 12:22 pm
Location: St. Louis, USA

Re: My Rapid Descent into the Living Hell that is ED: (and my first post!)

Postby Martin6469 » Sun Sep 22, 2024 2:17 pm

Levelled: I know you said that testosterone was ok, but your sudden onset reminded me of my sudden-onset ED at age 53 (see my signature). Labs make mistakes, and I recommend that you take Txagq8's advice and get a complete physical, with an endocrinologist's involvement.

To find a mens' sexual health urologist, go to the largest urology practice in your area and ask for their specialist. Many urologists are interested in kidney stones or prostates or fertility, and not our ED since they think it often has a psychological component, for which they are unprepared.

If doctors can find nothing, Trimix injections are your logical next step. I've been doing them for seven years and could not be more pleased. They work exactly as Txagq8 says. It takes two or three weeks of practice to learn, but there is plenty of good technique advice in the "Injections" topic.

Keep in touch.
Age 79 in 2024. On testosterone replacement due to hypothalamus malfunction. (Attention depressed guys: low testosterone is a cause.) Healthy health nut but ED due to getting old. Like to keep enough cardiovascular ability to thrust for 30 min.

ready2go
Posts: 285
Joined: Fri Aug 25, 2023 7:47 pm

Re: My Rapid Descent into the Living Hell that is ED: (and my first post!)

Postby ready2go » Sun Sep 22, 2024 8:07 pm

for me after i turned 50 i would say it was a slow decent to stages of ed .i never took brand ED pills but some from india ,which worked .
and coupled with supplements had good effect up to 63 years of age .
but that cialis gave me bad heartburn and another issue that has disappeared since i stopped taken it .
i tried a single ingredient shot and it worked after trial and error ,but fock that with the needle to the dick .each to their own though .
If i was your age one thing i would try is the veritca device . it uses radio frequency not shock wave . it is pricey ,around 2k . but has been proven to work on men with moderate to mild ED. with severe ED there isnt much effect .
i was going to give it a try , but didn't want to wait on the gamble .
so i went with a malleable . its always ready to go . But i think that loss of girth is unavoidable due to the spongy tissue being destroyed by the procedure they use to expand the penis to accommodate the rods .
i went from 6 inch girth to 5 . i have been planning to get HA fillers to gain the girth back .
my natural hard on was better , until it gave up the fight . so the malleable is a good solution for me . and it out lasts the girls .

oh , i had a neighbor my age who kept fit with weight training and he said he would give himself a shot of testosterone, once every 2 weeks .
and claimed it was a game changer both with his exercise and he would wake up with woody every morning . i never got into that as i had read it was complicated and had to be monitored . but that was not his experience . he would order it online and use it himself .

CanGetItUpButNotOff
Posts: 115
Joined: Mon Sep 20, 2021 1:34 pm

Re: My Rapid Descent into the Living Hell that is ED: (and my first post!)

Postby CanGetItUpButNotOff » Mon Sep 23, 2024 1:53 pm

A lot of good advice here. Just to add my 2¢ ....

I've done shockwave (Storz SD-1, the real thing) and I can't say for sure that it helped much, but I think so. I'm throwing everything at this problem, so it's hard to be scientific in evaluating what works and what didn't. I'm going to do more.

A qualified men's sexual medicine urologist is absolutely necessary. If you have gotten shockwave, it seems like that is a good criterion that the doctor is innovative in his approaches. I'd start with him/her.

You didn't elaborate on why you don't want to try injections. I have not gotten to that point yet, but I'm sure I will, probably sooner rather than later. When that day comes, I will gladly take the shot to get some kind of workable erection.

Hopefully, an implant is even further off, but likewise, I intend to embrace it rather than give up sex. With both injections and an implant, this board gives high reviews to each from which I take great encouragement.
Born 1954

Old Guy
Posts: 2699
Joined: Tue Mar 31, 2020 4:31 pm
Location: Ohio

Re: My Rapid Descent into the Living Hell that is ED: (and my first post!)

Postby Old Guy » Mon Sep 23, 2024 2:51 pm

Have to agree with some comments here about seeing a good men's sexual health urologist. When a doc says it's in your head, run as fast as you can away from that idiot.
Your experience is typical of many guys, and yes it can happen fast, or drag on for years. For me pills worked for maybe 2 years before I had to increase the dose which got me another year or so before they became unreliable. I did the shots for a couple years too. Started out good then they became unreliable.
When ED first hit I tried so many "men's help pills" that did nothing but give me heartburn. Waited too darn long to ask my doc for Viagra, and when that quit working another long period before starting shots. I'm sure all that time spent in limbo with zero erections led to losing near an inch in length after my implant. That belief alone says don't wait. Get it done asap.
It is a tough decision. It is a very delicate piece of our male anatomy to consider letting some doc take a scalpel to it. On the other side it will make a huge difference in your life, increase your confidence and ego. Best of luck making that decision.
Nov. 8, 2019
4+ years, Coloplast Titan OTR
Married 36 years to my beautiful young bride
Always here to answer questions if you PM me

Budward
Posts: 190
Joined: Thu Feb 01, 2024 5:12 pm
Location: BC Canada

Re: My Rapid Descent into the Living Hell that is ED: (and my first post!)

Postby Budward » Tue Sep 24, 2024 5:06 pm

I can totally relate to your aversion for needles, I feared them so bad. When things went south in my early 50's I got onto Levitra and it worked great for about 4-5 years. So 7 years ago I stopped having sex. After heavy Covid depression, lost my business, gained a lot of weight, I decided to take my life back. Got on Ozempic and started experimenting with Peptides PT 141 and Melanotan 2 and found erections again.

After all the needles with Ozempic and the other peptides I started to say I wanted to have real sex again, so I ordered some Trimix from Olympia. After several failed attempts, I got it right and wondered why I have not been sticking needles in my dick for the last 7 year. My friend and pharmacist told me about Trimix years ago but because of "FEAR" I wasted a lot of time.

Levelled, I would recommend you at least go the Trimix route before such radical surgery and expense of an implant.
Now I actually look forward to the moment when I get the needle next to Mr. Happy and very slowly inject the needle in. No pain at all, doesn't hurt and the erections are rock hard.

I am 68 now and hope to continue with Trimix for the rest of my life. If I need an implant down the road I am definitely going with a malleable.

Martin6469
Posts: 605
Joined: Tue Feb 18, 2020 12:22 pm
Location: St. Louis, USA

Re: My Rapid Descent into the Living Hell that is ED: (and my first post!)

Postby Martin6469 » Tue Sep 24, 2024 5:48 pm

Speaking of needles, I find that I can often inject painlessly with the thinnest, 31 gauge, because I can get the needle between nerves. And thanks to a tip from bldoink, I find the "EasyTouch" brand the easiest to use.
Age 79 in 2024. On testosterone replacement due to hypothalamus malfunction. (Attention depressed guys: low testosterone is a cause.) Healthy health nut but ED due to getting old. Like to keep enough cardiovascular ability to thrust for 30 min.


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