Will we ever get cured?

Coping
#1

I don’t care about wishful-thinking-helpful supplements, positive thinking, meditation or acceptance. We all know, especially at this Christmas time, nothing of this makes us (feel) any better.

The only thing I wish for, surely as all of you here, is to get cured.

My question is: Do you think, we will ever get really cured? I mean for it to be meaningful in our lifetime. In 25, 30 years?

Or, to make it simple… Do you think we will ever in detail know, what is wrong with us, what happened to us? Do you think, our condition will ever get acknowledged by worldwide medical society?

Really in need to know, what those “wise”, “knowledgeable” and “realistic thinking people” here think.

My whole life is nothing but PFS, trying to find any hope and forgetting this sadness.

I really do appreciate your answers and y’all stay strong…

5 Likes
#2

Plz make a member story here brother. We will know atleast what is ur story… :slightly_smiling_face:

1 Like
#3

Search for Chi, Reason, Mitch, Charles, English/english1

1 Like
#4

Lol…did u get cured from any of these so called protocols?

1 Like
#5

Some of us including me have had ‘moments’ where things return to normal.

I’ve had moments where sleep has been back to normal , erections (of a quality enough for intercourse and procreation say) , I feel loved by others and I feel gratification from loving others myself (which is actually the most important thing) and I’ve been able to continue my craft of songwriting , music arrangements and singing , being able to perform , to create and to have the will to work hard .

When I first went through PFS I wasn’t able to do any of these things above but over time some of these have improved . My answer to your question is if you’re able to feel a ‘moment’ of normality there again in one of these areas even just for fleeting moments , there’s the opportunity for this thing to be cured somehow, someday.

The frustrating things are the up and down of this and the way it seems to return for episodes , for instance now I’m going through one of the worst relapses I’ve ever had of this thing . It’s as bad as it was during when I first discontinued if not worse . I may need some kind of hospitalization soon to be honest , but I’m still not giving up on being cured as I know those moments I mention above are still within me to be felt again …

6 Likes
#6

If more research is done by experts we may have hope that a valid hypothesis, etiology and diagnosis can be established. Whether it’s curable depends on what it is and whether we can safely alter it.

In my experience, I have my rare better days, with increased genital sensitivity, harder erections, better ejaculate quality, less trouble sleeping.

Sometimes on these good days very rarely (a handful of days per year) even a spontaneous erection pops up. On these days, I feel closer to a pre-PFS state. I can’t put a finger on why these moments happen and go away again, I can’t find any connections with mood or food. But…

Those short surges of symptom improvement lead me to believe there is some kind of imbalance or bodily process that has potential for positive change.
The question is: What is happening in the first place and how can we stimulate the body to recover safely without disrupting other body processes.

I don’t think we will really find the answer ourselves. Some kind of very specific endocrine/neurological/autoimmune effect has been triggered since consuming 5ARI.

The condition has potential for reversal, at least in mild cases, is what I believe. My hope is this is true for more severe cases as well. But first we need to find the needle in the haystack.

3 Likes
#7

As a scientist from another field, I believe we will get a cure within 5 years of getting research started. The problem is that the community hasn’t done anything to make that happen. Thus far, we remain a fringe group of people complaining about being wronged by the medical industry while doing nothing to advocate for themselves.

As soon as we publicise our problem, show the world it is real, unify with PAS and PSSD victims, and give scientists faith that investigation of our problem is a fruitful pursuit, we will get a cure within 5 years.

That is why we need to stop dicking around with miscellaneous pills and herbs, make a serious video, have serious conversations with the other groups, seize on every opportunity to gather as much data as possible for the scientists, and generally start acting like credible people who have a real problem and are committed to seeing it resolved.

Until we do those things, we will never get a cure. As soon as we do, we will. It’s up to us. Here is an example of a course of action that I think would get us started. I would love a critique of my suggestions and to see the topic of conversation here turn from doing the same failed things we have been doing for 15 years to actual action that takes us forward.

8 Likes
#8

In 5 years is not going to happen. Even if we were organized within 20 years is wishful thinking. Pfs is not a virus and as easy as corona. I hope within the next 30 years or so we have a cure if it is curable at all.

1 Like
#9

Following…

#10

Not even tried

#12

Let’s get moving.

#13

Or, to make it simple… Do you think we will ever in detail know, what is wrong with us, what happened to us? Do you think, our condition will ever get acknowledged by worldwide medical society?

I am fairly confident that we can figure out what is going wrong with us and that awareness as well as acceptance of this condition will increase the more we find out. It is already happening. Ten years ago there was nothing on PFS. Since then there have been dozens of studies and literature reviews, there have been amendments to the labeling of Finasteride, there have been countless newspaper articles on PFS patients and increasingly doctors as well as the general public are becoming aware of this condition. Progress is being made.

Obviously, all that is far from enough and everything is happening way too slow. Unfortunately, we are in a situation, where little awareness and acceptance yield little resources, and little resources do little to raise awareness and acceptance. That’s a vicious cycle we need to break free from and that is not easy, but we have to and will try.

The good thing is, science is constantly progressing and sometimes rapidly so. CRISPR did not even exist 10 years ago and is rapidly changing and impacting research, diagnostics and therapeutics. We think that we have a fairly interesting condition with relevance far beyond the Finasteride-affected population. Once we have convinced a critical mass of people (particularly scientists) that this is the case, we are hopeful that the ball will be rolling much quicker.

Currently, we are pushing a massive rock up a steep mountain. It’s tough, slow and grueling. But once we push that rock over the hill, it will roll down on its own (and hopefully not been caught up in trees).

It’s impossible to give a time frame for all this and quite useless to discuss potential time frames, because obviously we are dealing with the unknown. We have to deal with this one step at a time, but with every step we will unravel a bit more of this mystery and in time we will have a better understanding of this condition and hopefully some ways to treat/cure this. The important thing is that we all do our part. We cannot rely on other people, we are a small community and we all need to chip in.

6 Likes
#14

I’m not replying directly to you here, NS, just trying to offer a thought.
I think a reasonable way to think about the time frame is that if we say that a treatment is the final stage, then we can think of the steps leading to that. So, every little thing that gets us closer to the research brings that treatment forwards. Alternatively, doing nothing means the treatment does not get any closer. As I’ve written about many times, one of the problems we have is that people often think that multimillion €$£ research is the first step.

Getting more awareness, getting more acceptance gets us closer to that research. Anything an individual can do to that end is a big help, far bigger than researching herbs, scientists or tweeting billionaires.

2 Likes
#15

No

What will hopefully happen is that these drugs are taken off the market to save future people from suffering the same fate as us. I truly believe these drugs will be considered barbaric in the future. But we are the statistics we will never see a cure. lets hope our suffering will not be in vain

4 Likes
#16

@hippydoof Love your attitude man, never for sure!

#17

Sorry but im far past the point of optimism with this. I truly believe there is no cure. Life for us will forver be a blanacing act of trying to manage symptoms but there is nothing that can reverse the damage done. If however i am wrong and a cure is developed it will certainly not be in our lifetime. The research on how accutane and propecia fuck you up to begin with isnt even there let alone a way to reverse it.

If you want to have hope then thats good. it kept me going for a long time. But the deeper ive sunk into this disease I just don’t have it anymore

5 Likes
#18

From the childhood we started to believe that the life is perfect. But unfortunately when something bad happen to us on the way of our life we are getting very frustrated. If you think deeply you can understand that every feeling is in our mind. The poor and famous multi millionaires also get suicide when they can’t handle the frustration. So we can see what’s important in life to live is reduce that frustration when they coccur. No frustration means happy and calm mind. How to achieve happy and calm mind is the process of ’ Accepting things as they are’. Accepting that life is not perfect because getting ill, aging, accidents happens, Accepting that we will die sooner or later then nothing is matter, Accepting that Buddha, Jesus and every other prophecy had to leave this world so nothing is permanent. Once you started to accept tragedies that happen to you, your mind and body will heal and come to a status that frustration replaced with happiness and calmness. Then you most of the time remain in the present rather than past or future. Then you will no longer desperate for a cure which is a harmful action. We MUST look for a cure, but desperation is harmful. that’s what I meant.

4 Likes
#19

If there is a cure to our own version of PFS we will find it on our own while being guided by the research and studies

The medical community will never cure us. Not enough vested interest

#20

So it means for the severly effected, suicide is the smartest option?

1 Like
#21

@anon74895881 that’s how it feels a lot of the time. But we can’t succumb and let those cunts at Merck have another victory. God is with us. Keep hope

1 Like