How many people suffer from PFS and do you think there will be a cure soon?

General Discussion
#21

Hi Bruschi,

Glad you’re feeling well. I’m surprised you’re posting the same thing again when you mentioned you wanted to share your ideas. You could use that time to spell out what helped you in a member story or the therapeutic category, as @awor suggests. As you’ll recall, despite claiming your ban was for threatening and swearing at other users (which was just coincidental behaviour), I banned you from solvepfs because you were extremely rude to me when I politely asked you to stop using the platform to recruit users there to an alternative health site. The same rule applies here - please spell out what has helped you in as much detail as possible on this site and not ask users to join other websites. Please read our rules regarding this here. If you’re short on time, write it bit by bit and share it then. It’d be a great help to users here who are interested.

Thanks.

1 Like
#22

@axolotl people ask me how I’m getting better so I tell them I’m learning a lot on an alternative health site along with my own research learning from recovery stories from PFS amongst other illnesses.

That is not recruiting.

Honestly @axoloti what happened on solvepfs was a long time ago now and this was just when I was getting my life back. Of course I was angry with the naysayers on these sites. Of course I was horribly mad that there were guys out there saying there is no way out of the hell hole I was in.

I almost took my life because of my situation when I was ill and the evidence provided before me by the naysayers.

I remember being in a mental institution screaming at the top of my lungs “I’m going to kill myself in 6 months if these studies show I’m ruined forever, I’m not going to kill myself now!”

I don’t know why you are bringing up issues between myself and you right now. I wrote above to give a person help who clearly is struggling.

I find this appalling that I am being reprimanded for what I have written in this thread. I do not believe I should be treated like a child. I am close to 30 years old and went through a severely traumatic experience in the past 19 months. I am not the bad guy.

#23

I’m just bringing it up so you know very clearly that the same rule applies here on propeciahelp. I take it you’re saying you were suffering psychologically at the time of that, but it was something you plainly refused to do, so I have to reiterate it here and wanted to provide you a link to the rules to look at so there’s no misunderstandings.

If you’re not asking users here in public or private to join other websites and wish to share your experiences on this website, as I said, that’s great and I look forward to you sharing your experiences with PFS in detail.

1 Like
#24

By the way @Darkparadise , if you haven’t already it’s a very good idea to report your effects from Finasteride to your national pharmaceutical watchdog.

1 Like
#26

I’ve read a handful of stories of guys who have been able to have children. I think the problem for most PFS patients is that they don’t feel sensation or orgasms or have the ability to get a full erection but I think it is still possible to ejaculate which is what is needed to have a child.

Even if you can’t reproduce yourself, which I don’t think will be the case, you can still make the most of your situation and adopt a child.

It will be harder to date and find a relationship but if that is something that is very important to you personally you will be able to adjust.

Take things slowly now and remember not to jump to any conclusions prematurely because you don’t know what is and isn’t possible.

Unfortunately, I have not found Bruschi11’s claims to be reliable. I have been aware of the reports of a lot of the PFS doctors and many, many patients and Bruschi’s claims that hundreds of patients “factually” recovering does not foot with the data points I have seen.

There is always the chance that you are suffering from some kind of treatable problem that coincidentally onset at the same time you started taking Propecia so it is worth getting checked out. It just helps to be mentally prepared that a lot of doctors may not understand.

4 Likes
#27

I’m now on Clomid and another medicine to improve my testerone levels. However, still not feeling any libido and erections, outside of popping lots of viagra or cialis is still dead and it’s a little less than a year from when I took procar for about 2 months only. I was wondering about CDNUTS cure… may give that a try

#28

I don’t think a cure for sexual sides is likely, if you have libido then cialis/viagara should help. But if you just have 0 libido than you are kinda screwed because cialis only works when you have libido.

Some people reports sexual sides become less over time, but no way to confirm and varies from person to person,

I think brain fog etc will go away eventually, lots of reports of brain fog going away.

I’ve read quite a few stories on here from even severe sufferers of being able to have kids

I think ED and shrinkage is probably going to be for life

source: being suffering and on those boards for 7-8 years

#29

When there will be no cure for sexual sides its okay. but i cant fucking read a book because of the mental sides. When they cant solve that i will kill myself

Write to the inventors of Finasteride
#30

Well a possible cure would more than likely effect us systematically, it’s likely all of our issues stem from one issue, fix that and you’d see body wide improvements, that’s the hope anyhow.

3 Likes
#31

I hope so devolution , i would be a new human when im cured. Because i drive a long road of hell

3 Likes
#32

Exactly how I feel, I see life completely differently now and I think if I ever get out this mess, I’d have a much better appreciation for everything, nothing would be taken for granted.

2 Likes
#33

This ! exactly like me

#34

read about the brainfog recoveries on this site, it happened a lot and a lot more consistently than sexual sides, I’m sure you’ll recover 90-100% mentally

#35

in theory yes but I’ve read a lot about diseases like AIDs or Cancer since I’ve gotten sick from fin, it took literally decades and decades of research with world’s best scientists and doctors to get something even resembling a cure. And there’s plenty of known diseases/medical conditions with no cure only management.

Maybe there is some magical button that needs to be pushed in our bodies and we’ll become ok again, but let’s be honest. There’s low chance of it being discovered especially since there aren’t really that many pfs sufferers out there so few will put in $$$ for it. Hell a good percentage of sufferers are probably on this website. People on this website has being using themselves as guinea pigs sometimes using incredibly dangerous hormone drugs for 10+ years and still no cure so I don’t think we are gonna discover it on our own. PFS is a really complex problem beyond understanding of modern medicine and amateurs aren’t going to stumble upon the solution.

At this point I wouldn’t be surprised if we reach old age of 85 and collect social security and still no cure for sexual sides.

1 Like
#36

Would be good when Donald Trump would get it.

1 Like
#37

Well, we are not on our own. Fortunately, we do have people looking into this who are not amateurs but top class scientists. You are right that in all likelihood we will never solve this on our own. That’s why it is so important to support the professional research efforts, to participate in the studies and to donate to the foundation. And while there is a good chance that even scientist won’t solve this problem in a meaningful time frame, it’s the only shot we have got. You never know what’s going to happen and how science progresses.

You are also right that we are a small group and do not have a lot of financial muscle. But there is overlap with prostate cancer research and there is a good chance that PFS, PSSD, Post-Accutane and other conditions have a common cause which would vastly expand the affected population. While our situation is difficult as you describe, there are also some positive cards in play. Let’s play our hand as good as we can!

7 Likes
#38

You can cure prostate cancer, but it is not allowed to make ads for that. Scientist wont solve ED problems cause you cannot earn money with cure. Just with treatment. Forget the cure by scientist. You should do on our own and read a bit. Then try some protocols. In ten years they will announce that they are on something. Oh, come on. Thats reality.

#39

If there was cures for certain stuff we’d know about it, biohackers etc would bring out their own cure, curing something means it works for everyone and that’s extremely hard to do, yes some companies try to treat stuff but i don’t believe every company does, there is a lot of money to be made in a cure for cancer and other things. I do believe if there was a cure for a specific illness, someone would leak it, you can’t hide something like that. Remember pharmaceuticals start small, they are usually just a bunch of scientists in a collage lab. Not everyone is bad, but not everyone is good, just focus on the people who are helping right now.

I don’t believe anyone has tried purposely to do what has happened to us, nobody wanted to give anyone PSSD, PFS etc, but it’s the people who blatantly deney it, who won’t help, who are too afraid to admit their mistakes, that are the issue. If we get this condition acknowledged, there will be funding because merck, roche etc will be forced to contribute by government pressure, that’s my hope.

#40

Sorry mate, the vioxx scandale showed what power is behind M. It is like that.
A cure means you dont treat for longlife long resp.you treat the root. This way, you dont earn money. Even GS said it like this.
Pharma would only help develop a cure if a catastrophy happens and people are shocked and wont buy certain products anymore. like fin. And this hurts re earning money. But anyway, you need an huge amount oft money to develop a cure FDA approved. I have been telling that for months and people dont want to understand that. No cure will come up. Or: Who will invest billions for a cure lets say 100 000 have (pssd included)? If you get the root forex of the sexual sides you get the main key. Then you dont need Viagra etc.anymore - right? All those studies are distraction. Never, I repeat, never will be a cure from the pharma. Never. My personal opinion.

2 Likes
#41

We don’t need a pharma cure at all, we just need knowledge of what to focus on so we can get independent research on board, lets say it is an over expression of androgens body wide and we find exactly what section to target, we could get people on board to help us fix the problem. We don’t need billions for an FDA cure, we need knowledge of what exactly is the issue, with that knowledge people can work out what’s the best means of action. I’m still very excited with Crispr’s profession as it can tweak gene expression without causing genetic changes, I’d be willing to let someone try it on me if they knew what my issues where, im all up for volunteering once more research comes about, we can’t keep poking a stick around in the dark hoping to find the way forward, once we know what our issues are, we can hopefully get out of this mess, a drug caused this, so i still have faith we can get out of this.

1 Like