Im wondering how long most of you are willing to accept your ED problems before resorting to more radical measures, such as an implant?
Im in my late 30s now and havent been confident in bed for 15 or so years. I try to stay optimistic but at some point I just have to suck it up and take drastic action, right? Have any of you considered getting an implant or are you all holding out for a cure?
And are we only allowing more tissue damage to accumulate by waiting? Is it best to have such a surgery sooner than later as a result?
I asked Goldstein if an implant was something to discuss and he said he doesnt think its realistic because I would need several replacements throughout my lifetime? But is that inconvenience worth another 20 years of ED and misery? It obviously wouldnt improve sensation but at least it would allow for a relationship and I wouldnt have to avoid women.
This is an incredibly difficult topic and digs at the heart of our problem.
Personally I would not gain anything from an implant. The problem is that I have no libido - the desire is missing. If I had a device installed, yes, I could mechanically go through the motions of sex. But I wouldn’t feel anything in the process.
There is also a non-zero possibility that the implant goes wrong - your junk gets infected and the thing has to be removed. You are then left with no erectile capacity all. This would compound your loss to the extreme.
After getting burned heavily with one medical intervention - Accutane - I want to minimise further medical interventions wherever possible.
As such, I’m not so interested in treating discrete parts of the problem. I am only interested in a realistic chance of treating the whole syndrome. So - I will hold out for “a cure”. (Remember, we need to understand the basic science of the condition, before we can think about a treatment. All this needs needs to happen in a specific order.)
Meanwhile, the plan is to preserve my health as best I can. This essentially involves avoiding further medication, eating solidly, doing moderate exercise, minimising stress levels. This is all standard self-care stuff. To be absolutely clear, none of this brings any improvements to my condition. It just slows the gradual deterioration over time.
I am inspired by the story of this guy, who lost his eyesight. He got a genetic treatment injected into his eyeballs and his sight came back. Whilst his story is different to mine - I’ve had this condition for around 15 years, he had his for a relatively short time - the message I took is that it’s important to stay as healthy as you can. If we work and obtain a treatment one day - our current health might have a big impact on the result.
Its insane that we are smart enough to restore human sight but cant get a grasp on our situation. I agree with a lot of what you say though. While waiting it out can seem preferable for the reasons you mentioned, we’re also letting life pass us by. My biggest issue isnt even that I cant have sex. I actually think Im abnormally content being alone, always have been. Its just physically uncomfortable dealing with day to day life with damaged genitalia. Currently Im trying to lose some weight so that Im not adding to my discomfort by adding fat that will only make my situation more unbearable. Im following Goldsteins protocol as well but besides that, Im at a loss. I think I may have 10 more years in me without surgery, at most. Certainly if things get worse, but living like this for 10 more years seems impossible atm. The previous 10 were hard enough and my situation was notably better at least in terms of physical structure.
Man, i think i will get a implant this year.
TRT help with my other symphtons with my skin, depression, brain fog, and increased a litle my libido, but not fix my ED. I think it’s a nice way for me.
Other thing libido it’s multifactorial, maybe if we get more confident to go to bed, enjoys girls, the libido can be increased litle more. And we can have a “normal” life. But it’s only my 0,02 cents
I’ll have to get an implant eventually, but I feel super depressed when I think about it. I don’t believe there will ever be a cure for PFS, especially for those of us with damaged genitalia.
I had an appointment scheduled to get an implant last year. My wife talked me into canceling it. I still may end up doing it, but first I’d like to see the results of the Baylor study before doing anything drastic. However at this rate I will be 90 years old before that study is ever published.
I probably read through over 1,000 guys stories getting an implant so I am very well versed on it and who is the best at it. Its actually not nearly as bad as it sounds like, even if you are young you will need revisions every 10 years or so but those are simple revisions. Let me know if anyone has questions on them.
It seems that Viagra and other ED meds just arent working like they used to for me. I did injections for a bit but it wasnt fun and def would have caused peyronies. Seems like the stress free route of an implant is my best option.
It is demoralizing but its also demoralizing to visit a forum 5 times a day, praying for a miracle that never comes. Having dealt with this to some degree since 2003, I can say that all of my symptoms have resolved except the sexual sides. I may be a bit more reluctant to consider this option if I thought that recovering from the other effects might give me some hope but its starting to feel like I can count that out.
What surgeon would you be going to? The only big name I remember was Dr Eid in NYC. Many of us are in our 20s and 30s. Is there a particular risk for having an implant in us for 6 or 7 decades potentially and undergoing that surgery 6 or 7 times? I imagine that each subsequent implant will only become more and more reliable. I agree that waiting for the Baylor study seems like a good idea in case theres some revelation, although Im not gonna wait 20 more years for them to produce something either. I also agree that it doesnt sound nearly as bad as one would think. Satisfaction rates are extremely high and given how particular men are about their penises, I think thats pretty encouraging. My biggest concern is its effect on the glans. Mine is currently still responsive and fills when erect. Id hate to lose yet another ability that Im hanging on to.
If course Man, my actually doctor is not the best surgeon for this, it’s,s great guy helped with trimix and anothers stuffs, but i have a consult with one of the best of my country next month, and will see what he can do for me. Maybe the surgery will be more expensive, but however health it’s the most valuable thing.
You can give a search in franktalk.org, there has some cases of young guys with PFS who has been implanted and got great results.
My tip for you is for not spare money with the choice of the doctor
I feel like an astrologer, and I don’t believe in astrology, in terms of having all the stars aligned for things to ahem, function.
I have to have the right about of supplemental T, and neither too low or too high a level of E2, and avoid any other medication or substance that causes or worsens ED, and make sure I have had enough sleep, and recognize if I am feeling attracted to my potential partner, and make sure that I have taken viagra or levitra not too soon nor not too late before the attempted sexual encounter.
Thus I have penetrative sex very rarely, since all these things have to be aligned. Plus I have to do my cognitive behavioral self talk to prevent any anxious feelings that might come from worrying about all of these things being aligned. An understanding sex partner is hard to find, pun not intended, and it is easier for me to take matters into my own hands, so to speak.
I’m hoping to try Cialis soon. Hopefully, it will make me “good enough” until my condition improves. In the event that my condition continues to worsen throughout the years, then I’ll probably try to get an implant.
I benefit greatly because I only took large doses of Minoxidil for 6 months, not Finasteride or anything else. I considered getting on Accutane at one point when I was 15 but my mom forced me not to. Thanks, mom.
But yes, my worse side effects are in my skin and hair quality, my libido, penile feeling, and muscle/bodyfat distribution. I’m becoming feminized despite my testosterone being 900ng/dl+. Yet my DHT is only 45.
I’m trying Creatine as an absolute first measure, from what I’ve heard it doesn’t do much for PFS sufferers but I’m basically testing the waters. It’s coming in tomorrow and I’ll try 10g at first, then maybe even go as big as a 25g load and see what that does.
But if that doesn’t do anything which I don’t expect it to, I’m trying to get my hands on Andractim gel right now. That seems safer than proviron especially considering it’s just raw DHT rather than a synthesized version of it. I’m trying to keep my hope up. I want my dopamine back, I want my libido back, my emotions back, my looks back, and my quality of life back.
I would probably elect to date women with very low libido over getting an implant. For example, a girl with ASD who wants a companion but doesn’t like sex. In theory, not wanting sex might actually make you more attractive to girls in this category, therefore giving you a competitive edge where you otherwise have a (severe) competitive disadvantage. Whether any girl is actually ever attracted to an impotent man regardless of her libido is an other question, however. It may be the case that sex is the “glue” that holds men and women together at least for a period (5 years?) before a deeper bond can take hold.
