Where are all the victims?

General Discussion Media & Awareness
#1

Supposedly over a million people use or have used this crap yet there seem to be few active users here with the full permanent sides.

Rather than say that this proves the numbers are limited I think that we are not reaching many men for some reason. I know some have left the old yahoo group and just got on with their lives but what about all the users on askadoc etc?

What about all the men having fertility problems who don’t even know why?

We need to get the word out so we have a stronger pressure group.

I reckon there must be at least another 1000 men out there with permanent sides, going by a 1% of users being long term victims.

#2

I was in denial for a very long time, especially about the sexual dysfunction. I think there are a lot of men in the same position. It’s sort of like an AA meeting where the first step is to admit you have a problem. It took me a long time to admit to myself that I had sexual dysfunction. I’m sure there are a lot of men out there who have not come to terms with what has happened to them yet.

#3

A lot of guys probably dont know how to find this website, or know one even exists. There are lots of people who dont bother looking online for information, you’d be surprised…

#4

I’ll put my hand up. i guess i was in denial for a while but i also just didn’t connect the dots. i was so naive that i actually thought it couldn’t be propecia cause the doctor had told me any side effects experienced from it would be temporary. i didn’t even know what dht was, except that it caused hairloss.

no doubt the biggest lesson i’ve learnt from this whole experience is that you have to think for yourself, do your own research, and trust no one, no matter how smart you think they are, with your health, but you. if i had done that to begin with i probably wouldn’t be in this mess.

i should probably add that i am very confident of a full recovery.

#5

Many users may be relatively old, therefore either they don’t realize to have sexual problems (they may blame the age) or they don’t use internet as much as people in their 20s and 30s

#6

People have already touched on a couple of good points. Another one might be that a big chunk of those millions of propecia users are from foreign countries, might not know English, don’t use the internet quite as much as we do in the West, etc.

Also, not everyone who uses the internet is necessarily familiar with forums. Just because someone finds this site and absorbs some of the information doesn’t mean that they’ll take the next step and register, introduce themselves, become involved and so forth.

Oh, and on top of all that… from what I remember of the hair loss forums, some guys don’t even consider some of the symptoms a major problem… they see it more as a bump in the road in their greater battle against hair loss. Sounds ridiculous, I know, but there are people like that out there.

All things considered, I think we on this forum are a very tiny fraction of men suffering with post-finasteride syndrome… even if perhaps slightly weighted towards the more extreme cases. The total number of men with PFS is probably impossible to calculate, not least because of differing definitions (do we include someone who had frequent ED for ten months after quitting?), but I really doubt it’s just a negligible chunk of total fin users… I think a large fraction of fin-users (10%? 20%?) will end up with varying levels of these symptoms if they just keep at it long enough.

#7

luckyfax,

I think the number is much much larger than 1,000. I am only speculating, but I think like many of the other guys in this thread mentioned denial is part of it. The other part is the embarassment with coming to grips with this. This is one of the worst things a guy can imagine dealing with. If you come on this board and admit you have a problem, the next step is to go talk to a dr. Most men don’t want to deal with the humiliation associated with ED.

I believe a class action lawsuit in the USA would cause a ton of guys to come forward and admit this drug negatively impacted their life.

#8

Yeah those freaks gauge the responsiveness to fin by wether or not they get morning wood, if not then it’s working! I know one guy in particular who was one of the most vehement defenders of the drug and he’s got ed!

#9

I’m sorry but I have no shame when it comes to the side effects this drug has caused nor do I have reservations about verbalizing any of the most sensitive info to my doc. not that they have hlped much but if you are a male American experiencing problems you should be on this site…

#10

I agree with you Mickey they should be on this site if they have problems. However, I do believe most men do feel embaressed to discuss the topic with their doctor. I know I felt that way and thought if I wait things should return to normal on their own.

#11

What I want to know is where are all the guys who have been treated by Crisler for this? He says he has seen a couple hundred guys but there’s only been a handful on here. I can’t believe all the rest wouldn’t be aware of this website. If anyone has made good progress via him it would be vital information.

#12

I’m still bemused by this, there only seems to be a handful of guys active just now, some of whom have mild symptoms. If there really isn’t that many of us it will make getting interest from the medical world difficult. OH MY GOD I’LL BE LIKE THIS FOREVER!!!

What about these guys who got breast cancer or any of the other horrible adverse reactions? You’d think they would at least be investigating…

#13

Where has he said he has treated over 100 people? If he had treated over 100 there would certainly be more of them on here giving information, I find that very hard to believe. Back to the topic at hand, sghcnt made some great points as well as others, but at the end of the day I think this is really rare, but like Mew said a lot of people really don’t use forums, some haven’t even came across them especially older guys that don’t use the internet much. But then again all it takes to find this place is a ‘propecia side effect’ search on google so if this were more common than some of us think, I’m sure there would be more active users on here.

#14

The people on this site represent the percentage of people smart enough to connect the dots. People rarly connect the dots with any meds sides. its why the first question the doctor asks when you have a problem is “what medications are you on”. They rely on the doctor to do the detective work. In the case of FIN, even when sides are noticed the “party line” is that if you power through them , they’ll probobly go away. So most people take a great deal of comfort in believing that if it gets to intense they can just stop.

I have read some sad and pathetic things from guys on other sites, like “the loss of libido is kind of nice. lets me concetrate more on my work” ???WTF!

i would not be surprised if 100% have sides, but either are so fixated on their hairloss or attibute them to something else. Remember: most people on this planet have chosen “not to take a drug that would alter their hormones” for the purpose of looking cool. So is it so hard to believe that some of us would even chose “to ignore” the sides, in our quest for “cool hair”

I all honesty, even if they printed that the sides were permenent on the warning, many would have tried it…but perhaps would have stopped at the first sign of trouble , and would not have “powered thru it for another year” (thereby doing the BIG damage)

To be comletely honest: exept for the penis changes & out of range labs…I could have probobly been convinced that the other 15 symptoms were due to my age or crappy diet or drinking or whatever…

I no longer buy 1% to 2%. Its got to be like 40 to 90%

#15

I stopped at the first sign of sides after 1 month and i am not in a good way.

But also the amount of doctors that have told me fin could not do this and my own family say they dont believe that they would let or keep a drug on the market that would do this. Some guys would believe this and look else where for the root of the problem.

And you cant forget the ones that have taken thier own lives cause im sure theres plenty.

#16

I would hope not but there may be a few. Sexual sides are bad enough but the rest is just too cruel. I’m sure guys that came down with the full range of symptoms in the early days if there were any, before the yahoo group and this to compare with others, must have gone through a worse hell. I salute them.

#17

Quit the clowning