Whats really sad, this that so few people believe us.

General Discussion Media & Awareness
#1

I just felt like writing because again today I heard from someone close to me that its probably all in my head for the two hundred thousandth time.

No matter the fact that we now have doctor’s studies supporting us, the FDA has finally decided to give a shit and look into it, and there are OBVIOUS physical and hormone issues at work here, we still have people who say that this isn’t possible/its in our head.

Sometimes I just don’t know what to think about this world anymore, stuff like this just makes me hate humanity as a whole. Logic and reason truely do not rule our species.

I’ve had a doctor walk out on me when I told her I was suicidal and begged her to admit me for comprehensive medical testing. I’ve had a psychiatrist say that I had dismorphic dillusions. My mother didn’t believe me for 4 months until I actually showed her my 3-adiol-G results that came back out of range low and showed her the corresponding information that said this is a sign of herrmaphroidism (she is a nurse). 95% of the friends I talked to said it was in my head and would get better over time… until that men’s health article came out… then they just shut up with that.

Believe it or not, even thou I have spoken with several doctors who know about our situation and are trying to help men like us. It has been the nurses who in fact I have found to be more aware of the situation with this drug then anyone else. Nurses I met who were working in hobunk little outfits at that. One of them just when I merely mentioned finasteride already began asking me if I had this side effect or that side effect that she knew guys were getting from finasteride. She even gave me some encouragement saying she knew things would be coming over the horizon to help guys like us soon. I don’t know how she knew any of this because the doc she was working under didn’t seem to know shit.

But with most of these doctors I think the problem is simply pride. They believe that our society is so advanced in our understanding of medicine that something like this is impossible because they don’t have a simple cut and dry answer, they can’t fit it into one of their pre-existing disease state “holes”. And they eat up whatever garbage the pharma reps shovel down their throats when they are touting their drugs.

I have lost my job because of this, I have lost all my will to do anything I ever wanted to do, I just sit around most of the time trying to be positive in the face of a horrible situation. I am sure many of you all do the same or try to.

Sorry for the rant. Sometimes I think it helps me to write, and get some of it out.

#2

man I feel sorry for you.
So you have lost your job too just like me? that is sad.
Just have courage and spend your time creating awarness and write letters to universities professors.
I wish some one doing PhD pick up as his PhD project.

#3

Yeah man, pretty much lost the job. I was a cop, co-worker knew I was depressed and ratted me out… donno if he was trying to help me or he just got sick of me and my lackluster additude/performance. Anyway they had IT check my computer and saw some of the depressed/suicidal convo’s I was having through email on there with my dad. I was stupid for having that on my work comp I realize. But you know what this stuff does to you and your sensability… goes right out the window.

Had to go to psych eval and my doc cleared me to go back to work. Then they put me on medical leave, stopped paying me and took away my health insurance for 6 months and then told me I had to go see one of their contract psych’s. Well surprise, surprise their contracted doc decided I wasn’t fit to work. (even though I feel the best I have since this all started)

I have a few more weeks to fight it so I am now spending the last of my savings (money I having been saving for 6 years to buy a house with) to hire a lawyer to fight it.

I have thought about going to school and basically making it my “life’s work” to help solve this. Makes pretty good sense seeing as its basically ruined me… just wish I had the drive I used to have.

#4

We are basically looking into the abyss right now. We will over come this and find treatment, or we will die trying. We must stick together and support research and each other. Maybe it works, maybe not. Either way, never give up, the reward is simply too great. Normal, everyday life will end up being truly special, something I know I used to take for granted, but would never again, not for one second, and that may be a great blessing. Stay strong, no matter what, refuse to give up. We will beat this, it will not be easy…obviously…but we will be whole again. I believe this in my heart.

#5

I’ve made it my “life’s” work to solve this shit too. And I plan on doing it not through scientific investigation, but through civil disobidience.

What do we want? To get cured.

What does Merck want? For its stock prices not to crumble.

If we can find a way to make Merck’s stock prices fall dramatically, we might be able to get them to help us.

#6

I’m with you on the street activism. I think it would take more than P.F.S. sufferers but those who been harmed by many other Merck drugs as well working as one advocacy group.

Then again, I don’t know, even it it were possible if I’d want to tank Merck’s valuation until settlements are pursued and they place $50 or 100 million in another fund for independent research.

#7

Absolutely the case with M.D.'s, if they haven’t heard it from another M.D., it can’t be believed. I’ve worked for M.D.'s, and I think I mentioned I briefly worked for the most well known hair transplantation M.D. practice in Beverly Hills (around '98).

I feel really badly for you losing a profession you probably fought to get into. I’m barely performing at my ‘job’. With the possibility of a sex or a relationship off the table, it’s hard to keeping hold of a reason to keep struggling. I don’t think this PFS thing will kill me…but there’s not much to look forward to now.

Trying to be positive is definitely the case.

#8

On the other side of the coin, this yet to be (fully) discovered disease gives doctors and scientists an opporunity to get their names published/gain reputation/advance their careers by publishing articles. We need to find a way to exploit that.

#9

Yup, I thought about that too. But it seems it isn’t enough incentive for them.

#10

Completely agree with you broken pecker. The ignorance surrounding this drug blows my fucking mind, especially given that:

  1. it can completely screw up a male foetus’s development if a pregnant woman absorbs it in any way

  2. the drug was discovered through studying hermaphrodite’s with a 5 alpha reductase deficiency. Who’s genitals were somewhere in between clitoris and penis.

The ignorance does not surprise me though. Turn on the news and you soon realise that the whole world is backwards. We are direct victims of corporate greed and for Merck, we are probably not even a big deal considering they have caused mass deaths and mass sterility with other medications.

I have shown my dad numerous sources about finasteride’s dangers and yet i brought my issues up with him again recently and he just started laughing hysterically.

#11

I’m sorry. Mine hasn’t been much better.