How long must we wait?


#1

How long do we have to wait? Every day feels like an eternity. Sympathy and support are given to those with serious illnesses around the world. Yet, some of us continue to silently suffer in this isolated hell, pretending to be able to function as a normal human being.

It’s embarrassing, even people I trust and are close to me don’t want to hear about how my dick is mutilated from a drug that thousands maybe millions take on a regular basis. They don’t want to hear about how sex, the one thing in life that has been consistently something that gives me pleasure and something to look forward to no longer does so. They don’t want to hear about how I can no longer connect with other humans, or how I’m now a recluse who spends most of his time trying to distract my mind.

This condition is an absolute nightmare, and while we have a few ongoing studies, people continue to try their best to distract themselves long enough to dissuade themselves from suicide or worse. I’m trying to remain optimistic but the heartbreaking nature of this condition could make the strongest willed individuals drop to their knees in defeat. The same doctors who haphazardly give out this poison have no incentive to believe you or even care. It’s a real shame and incredibly hard to accept. I’m trying my best to live a normal life, but every day I try to find answers and end up with nothing. I feel guilty. I feel guilty for taking this in the first place, I feel guilty that I don’t do more to spread awareness, and I feel guilty that I haven’t done more to try to find normalcy, but at the end of the day it seems that my efforts would be futile nonetheless.

Baylor finished in 2015, here we are in Februrary of 2019 and there are crickets. I was told there was something substantial found in the study, thus the delay - however, if it was so substantial, they would see the miserable condition we are all in and at least make some sort of public effort. I remain optimistic, but nothing in my life has ever been this difficult.


#2

I’m pretty frustrated by the lack of any info from the study as well. And share a lot of your sentiments in the rest of your post…


#3

Very well said my friend.


#4

This is my 10th year of PFS and I’ve only gotten worse. I don’t think there will ever be a cure and if Baylor actually found something substantial it might never get released. After all we are a few thousand unlucky idiots vs. multi-billion dollar companies.

Besides, all the drugs we are now forced to use (viagra, vitamins, sleep-aid, etc.) or try, and money we donate for research is profit for them. Also, we are potential candidates for other diseases as well, such as prostate cancer, so we are very good for business…

Do you honestly feel that the medical community actually care about what we are going through? Why would they ever want us cured?


#5

The application for a treatment derived from studying PFS could be far and wide. The findings that PFS studies will deliver could and likely will lead to all kinds of breakthroughs.

I’m going to assume neither of us are scientists but let’s compare the way that PFS affects us and the way other members of society are affected.

Got no energy, got no libido, losing muscle mass?

Sounds like being old.

The cure for PFS could well be the fountain of youth and if you don’t think there’s billions to be made keeping wealthy CEOs, actors, executives and whoever else you might think of feeling fit and healthy and productive, I think you need to think again.

A treatment for PFS could be a treatment for 100 things.


#6

That is just wishful thinking unfortunately. Similar symptoms doesn’t necessarily mean anything. When you have those symptoms at 20 or 30, it means you have a very serious health problem. When you have them at 70 or 80, it’s nature… A treatment which works for a sick young person doesn’t mean that it’ll work for an old person who has similar symptoms due to age.

My father was a pharmacist and there are many doctors and pharmacists in my family so I’m not unfamiliar to medical science. I really hope that time proves me wrong but the truth is that our chances of winning the lottery is probably 100 times more than getting a treatment for our condition in our lifetimes.


#7

when thats really the case i will kill myself NOW


#8

I think it really depends on the scope of the problem. It could very well be permanent damage that has no cure in our lifetime, but I think the scientific community will need to confirm this before we all give up hope.


#9

But you are improving! Don’t say that


#10

but not sexually. i really have 0 libido …


#11

i think that would be the biggest pharma scandale after contergan…


#12

I think it is pointless to speculate whether this is curable in principle and whether we will have the means to cure this in practice. We don’t know. Maybe it is, maybe it isn’t. Maybe we will, maybe we won’t. Let’s find out instead of indulging in pointless speculation and thoughts of desperate measures.

There is research ongoing, there are community projects ongoing and in the pipeline. There is Sage-217 which may alleviate some mental symptoms. And while all this is progressing much slower than anyone of us wants, there is progress. Let’s see where it takes us.


#13

i only want to know from the rest here: 10 years pfs and no improvement, even worse. is this common ? when im honest i dont believe these guys claim to be 80 % themselves really had pfs in first place. they may had something else… i mean while i took the drug i was 80 % of „me“. after crash 10 % , now 1 year after i would say 20 % me. but thats more because of my brain adapted to this, not because it can fix itself from this mess… fucking pharma. really hate them.


#14

What needs to be happening is fundraising to hold these studies outside the US where they actually publish and without bias…As Awor eluded to earlier it would take around 400k to do this…

If there were enough people or famous and or rich people this could be obtained and new studies launched…I dont trust a lot of these that have already published such as Harvard and bingham’s women hospital was a waste of their funds…I wonder if any of the foundation has reached out to celebrities as some are quite charitable for certain causes…

The longer Baylor goes the more is gonna be expected and it is casting doubts about the validity of what they are doing…


#15

*eyeroll


#16

you think hes too pessimistic? i understand him. 10 years pfs and no treatment. i would have given up as well!


#17

good for you both


#18

lol. dont be mean here. we are all in the same boat. i mean i understand him, that doesnt mean i think the same. i think 10 years before it looked much worse than now. because from 1997 to 2012 there was no progress or awareness of pfs. the foundation will do everything to help us. they spread more media awareness and fund studies. im optimistic that we are much further in 10 years. and i dont think its incurable. no disease is incurable. for everything is hope. even cancer and hiv


#19

IMO this condition is curable, the only issue here is that the doctors are too dumb at the moment to find a cure for us… I don’t count on those studies at all if I have to be honest.


#20

If you’re discounting the studies what steps are you taking to cure yourself?