Anyone get somewhat better after 2-3 year mark compared to 1 year?

General Discussion
#21

I don’t think it’s pointless aiming to get research done, I just don’t think it will ever lead to anything, unless in 20-30 years time PFS becomes some sort of epidemic. I have huge respect to those of you who are pushing this with the science community and media.

I mean, what’s the aim? to get research done and hopefully someone finds a cure?

I think it’s either natural recovery or medical treatment by a doctor/ self treatment or nothing. I’m willing to try anything that might help me before I off myself.

#22

Im not surprised. Anyone in bad enough situation to go to him will likely be well past this avenue, anyway.

It’s contained in his book i do believe.

Either way it hasn’t did much for me but has helped various guys myself and Enden have recommended it to on hairlosstalk forum, so it definately can be useful.

#23

I think it’s either natural recovery or medical treatment by a doctor/ self treatment or nothing. I’m willing to try anything that might help me before I off myself.
[/quote]
Catch a grip friend, you have minor sides compared to most. Your youth is no excuse, annon1 and JN to name two off the top of my head had COMPLETE IMPOTENCE at your age. Stop having digs at me when at least I am a desperate case of PFS, and actually moan about it less than you. If i ever got to your point I would be delirious and spending every night out clubbing and/or screwing hookers.

And, obviously, we can’t solve this ourselves. Studies will surely come with more media attention and the lawsuits. Plus, we need to be better ORGANISED so that guys who disappear after a while, not recovered but just resigned to trying to live their lives without thikning about this all the time, can be easily contacted and we can put together a strong pressure group.

#24

A research company would have far more resources than any doc in private practice. Our problem is way beyond that. We need to see the common microbiology behind this. No offense, but I’m just dumbfounded we have guys on the board who do not understand how huge this is for us. I think it’s very reasonable to be cautiously optimistic for the first time in a long time when Awor states he is close to the “first step” toward that goal.

#25

Fair enough. When there is any research or anymore media coverage which I can get involved in from the UK then believe me, I will get involved.

In the meantime I think it would be hugely beneficial if we had two sticky threads:

  1. outlining what people have recovered with

  2. a list of internet sources for pharmaceuticals, i.e. cialis/ viagra

Oh and luckfax, fuck off, as it’s been mentioned before, this isn’t about who has worse side effects and either way mine are pretty damn severe. I can assure you that you wouldn’t be delirious, just because I have had some fluctuations doesn’t mean I am not a bad case - I would go as far as to say I could well be worse than you for all you know.

#26

That’s in part what the “post your experience” threads are for. Users can make more of these, as they see fit to survey specific therapy attempts.

One of the things I have on my todo list is to create a web based survey to generally find out how people are doing, what helped them and what not. I would really love to compile a statistical profile of the people in this forum. I already have all the infrastructure in place to do this, but just haven’t found the time yet to complete the work. I have also not put it on prio 1 because I find the lack of response to some of my other survey questions (such as the cancer or TRT one) very disappointing. I would hate to spend a lot of time setting up and professionally validating a survey and then only have a dozen responses.

#27

That sounds like a good idea Awor. I think some sort of survery/ questionnaire to find out how everyone who still uses this forum is doing would be very useful.

A thread outlining all the possible meds/ particular supplements to try for those who are ok with that would also be useful in my opinion. If I see something someone has recovered with, and it’s not that expensive, i.e won’t cost me much more than a night out I am willing to try almost anything once I have done research.

#28

If you are thinking of starting many surveys, what about adding a section “Surveys” somewhere on the homepage of the forum? That would increase participation by users, especially occasional visitors (who definitely do not read all the new threads from their last login)

#29

I’m so fucked. Who’s had some of the worst symptoms show up 15 months off the drug when they were making progress before? seriously, every little bit of progress I have ever made has just gone down the drain. I have had a partial crash again.

All my money and effort completely wasted. Fuck this life.

#30

I had all my worse symptoms hit me almost 2 years after discontinuing the drug…

it’s the choices you make and treatment options you choose now that will tell if you make improvements or get worse…

#31

3 yrs pfs
no improvements in 2 yrs.

in the last yr improvements
cyclic sides
less severe numbness
girth (this was the most noticeable)

right now girth is very close to my old self (as far as i remember) but i have to say that
new veins appeared in these yrs don’t disappear

imao the physiologic pressure effort when ur body try to get an erection on “pfs modified corpora cavernosa” caused these veins and they will remain also when the situation is better