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