I have noticed there are like 1600 members and yet there are just a few that show up weekly or daily (MatinM, BostonUSA2009, Boston332, Luckfax, Joe-91, Oscar).
Where the hell is everyone else - curred?, semi-cured, given up?
Although sometimes the post lead us in circles it would be helpful to see what is working or not working with sufferers.
Cured and just not letting us in on the cure. Come on guys, what gives?
Seriously though I’d bet almost all have given up or sick of dealing with it. Maybe its easier for some to “accept” it best they can and try to forget about the life they had pre-Fin. Also, I see some view the forum but don’t feel like posting for whatever reason.
I was wondering about a couple - one of the mods - “golf” and member “cantsleep”. Cantsleep was in pretty bad shape last I knew. Honestly first thing I wonder after I don’t see someone for a few weeks is suicide. I think there are more of us that have ended it than we know about.
Im surprised there are only 1600 members to be honest…
I second Boston, a lot of people have given up or don’t have the energy. There may be 1600 registered users but there are a lot more lurkers. Add on the people who have no fucking clue what’s happened to them or why, in addition to the people who haven’t found the forum or are on other forums, and you’ve got a lot of people…
I think most of the people don’t have the energy (including me). Many people are lurking around. I was for a very long time. I thought time will will fix the problem. For me nothing has changed since.
Id say this is the best answer
Thing is though, there’s no doubt 100’s of people who havent recovered but yet, despite having looked at lots of different treatments they didn’t actually commit to anything or try that much.
I am not trying to get anyone upset - it is just odd to me that there are 1600 memebers but only a few posters. I am hopeful that many have made at least a partial recovery with time. I do realize there are many lrukers as well (myself included who check in advice from various folks (mostly on those who find something that is working).
I do sometimes worry that maybe it is something beyond the propecia that gets a few of us to this state - fin maybe the catalyst but at this point there is something else that causes us to not get any better.
My original point was that any feedback (positive or negative) could help others on these boards. I know there are a few mad scientists amongst us but one of us is going to hit on some tactic that will work for someone else.
I totally agree. I believe there are 10’s of thousands of men suffering from this poison, all of which are at different stages of damage from it. Think about it, we see posts from men all around world posting on this forum. Surely, they can’t be the only 1 or 2 people suffering in their country.
I think the whole thing has to play out. Many men are in denial and those that were here likely are just coping and accepting the lower quality of life.
I think a clinical study that proves Propecia has long term damaging effects to men and much higher percent than the 2% Merck claims would change things significantly. It would open the door for a lawsuit and that will bring many men forward that are in hiding. I really wish these lurkers would just join and get out of denial.
I recall Mew saying there are about 3x the number of lurkers as there are members. The interesting thing is, I was lurker here a few times before joining. I had all of the sexual sides. When I read some of the posts on here, I started realizing other health problems I was having that I never realized were due to this drug. As a result of this site, I quit and of course I crashed.
scaredtodeath,
I see your point. If you look through the members’ stories you can see guys who have had severe sides for years but don’t look in to often, most probably just continue with their lives to avoid dwelling on it too much. Perhaps they concentrate on work or other stuff to keep them occupied. I don’t think anyone has gone off and got cured then not come back, there may be the odd exception.
I have posted about this before but I’m surprised there aren’t more sufferers. I’m sure multitudes of men are having problems on the drug, perhaps the vast bulk get back to an acceptable level when they quit. I don’t think we are missing anyone really as I recognise people who post about PFS elsewhere as also posters here for the most part. I think it’s the worst affected of us who hang around in the main.
luckyfax, Yes they are all over the muscle chat boards. There are hundreds of them on those boards. I see them all the time.
Not to argue but just to give some hope Dury said he was cured with clomid treatment recently. So, there are “some” but yes there are very few who are cured and don’t come back.
Does anyone know what happened to the mod “golf”? He used to post all the time then suddenly a few months ago disappeared.
Golf said he had to cut his time on this site down because of a new job, i see him online every now and then.
I also think alot of the 1600 members who have signed up come of the drug, are in a bad way, freak out, find this site, sign up, then make a recovery as per advertised. But yes im sure a few have just given up coming here.
Im a bit dissapointed i didnt get a mention in the top post, joking, but i am here rain, hail, or snow everyday 
I knew about this site since March 2010, when I quit Propecia and realized I wasn’t getting any better; I only just joined in December 2010, so I was a lurker for a long time. My reason for the delay in joining was simply a matter of resource allocation; I was spending all of my effort to look for doctors and get blood tests done and everything else. Basically, my first priority was saving my own life, and I couldn’t afford to use the time blogging, since that would only delay my ability to find more doctors because you can’t do both at the same time. Probably also, there was some hesitation to put very personal information like this on the internet (i.e. how my penis is doing), which seemed a little weird to me and I shyed away from doing that for a while. And of course, I’ve been so damn tired I was hardly able to do either of these things anyways; it was tough to get around during the day and perform at my job, let alone “work” on this site too.
I work Monday through Friday, and that occupies most of my day; and when I get home, the last thing I wanted to do when I got home way to go blogging on this website and have a freakout right before I go to bed and end up not getting any sleep that night and then having to go to work the following day. Any time I spent doing any of this stuff was either on Friday evening, Saturday, or early Sunday, so that I had enough time to calm myself down before bedtime and so I wouldn’t have to go to work without any sleep the next day.
I’ve recently gotten hold of a doctor I can trust (Dr. Goldstein in San Diego), know the routine to follow in terms of getting blood tests periodically, and am just listening to that doctor and taking my prescription drugs untill something happens. Now I have the free time to blog, since I don’t have to spend all my time looking around in a panic, and so I log on here now to tell my story and appraise everyone of my progress so that hopefully people will learn from my experience and maybe also help themselves.
You guys in the u.s are really lucky…i have NO help here, atleast you guys have doctors willing to try things.
Tim
If there really is nothing in New Zealand its not as if you cant access certain drugs if you wish. If you have bloods you should have a good idea of what might be helpful.
Sorry tim1911983 - - did not mean to leave you off…
I am actually really hopeful most of the 1600 have made at least a partial recovery. But that also makes me panic and feel like I am one of the few that is not really improving - perhaps stuck in the wrong protocol.
I am also pissed when I see a really important thread that just goes unanswered for months - surely one of us has feedback on these items? Honestly I still feel lost when looking at this forum because there is so many folks pursuing treatments that end up deadends. Surely there must be a few protocols that help individuals who meat a certain hormonal profile (not cure but help)
BTW - not sure why this thread got moved into Social awareness?
I totally agree with AeroEngr.
I was a lurker myself for several years. Why? Because I thought time will fix things and I was too frustrated and too tired to read all the sad stories here. I tried to keep away from the forum and think positive in order to get better. Unfortunately nothing got better. I am suffering for almost seven years now.
However, you can be sure that if I had recovered (or had gotten better), I DEFINITELY would have become a member and posted my story here as this problem is one of the most threatening things I have ever discovered in my whole life.
I am a patient of Dr. Alan Jacobs now (even though I am from Germany). Hope he can help me somehow. I had tried almost all supplements - without success.
I guess we will never know why there isn’t a larger number of active members here. I can tell you that I am far healthier now than I was when I was taking the medication and I was lurker a few times.
The point is, I think men generally try to push problems like this under the rug. They avoid seeing the doctor, until they no longer they no longer decide they want to deny it. I have seen similar studys before. Woman are more likely to see a doctor sooner.
Tim,
I’ve seen 2 of the “PFS docs”. Right now I really don’t see how you’re missing out on anything. There really arn’t any of the docs who are having any success with treatment. Most of us are just thousands of dollars poorer than when we started. I think it will be interesting to see how some of the members in Asia now are treated considering how much difference there is in opinion on causes and treatment here in the US. Very easy to give up when you consider how complicated this is and the fact that so few are attempting treatment.
Having said that, its important to note we are lucky to have a hand full of docs trying to treat PFS. I do believe that the more of us who seek help the closer we will get to some answers.
I reckon Dr Crisler has more success than many on here seem to realise.