Just asking some we can have insight on how many user are still active on this site. I have a bunch of friends who still take finestride and I want them to quit, so I want them to see exactly how many people are effected here
The Post finasteride foundation has 19000 registered cases and thatās those who made the connection there will be many more.
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Trueā¦but I was asking for this site
There are thousands on here but not many are active. Sufferers tend to post here regularly to begin with
We dont talk much anymore, there isnt much to say.
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ā¦then they realize no one has the cure, and they slink off to suffer in silence.
If they repeatedly discuss their ills they are told they are a bad influence on newer victims who still may have hope.
Perhaps theyāll be a lucky one whose symptoms resolve themselves in 3-6 months. Theyāll return to share the good news and invariably someone will say they probably werenāt sick with PFS at all.
Maybe theyāll just sit back, visiting the forum daily in hopes of good news that never comes. Jim
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Yes sir, I understand. I guess what Iām asking is, is there a reliable place for people to go for statistics and emotions support. I like this place but I think alot of misinformation and dangerous information on supplements and healing methods are begin post here. One post I saw the person said doing āmethā help him his but to his pre self. Alot of other post have show per existing health(mental, and hormones concerns)that should have been address before Fin was taken. Please donāt take this as me talking down on you or any person on this form. In fact, I say this in order to help get a accurate picture for who really(myself include) are a victim of this disease. I had ask about active users, because in a survey the group did in 2019-2022 only about 500 people actually participating in the survey, with the information not even share to the public. Again this isnāt criticism but advice so we can really be taken seriously by the world and FDA(2022 feb) who just recently rejected the lawsuit put forth by the foundation due to incomplete data on the victim. Please I ask on behalf of all victims, and to the founders and leaders of this group please take this into consideration.
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Many are that traumatised, have lost so much, have zero drive, motivation, male characteristics, low emotional state, physical collapse etc etc are defeated and feel that itās pointless, hopeless
situation, lost cause which I understand and I feel all of this too. BUT accepting this and doing nothing wonāt get us out of this mess. Many have tried to rally the troops over the years. Despite constant reminders only a few completed the survey, the same goes for reporting symptoms to the authorities, speaking up, talking to journalists, being interviewed, making a video, telling oneās story. Many do none of this which is why the needle has hardly moved in 2 decades. Reliance on a small group of people gives this no credence to the outside worldā¦ I know of 2 guys who took their lives who lived less than 10 miles from me. Simon Breidert knew of a few people personally, one of his friends committed suicide. This is more common than people believe, there are thousands that we know of yet they mostly hide in corners and do nothing to help the cause. This has to change, the cloak of shame needs to be shaken off and sufferers need to do the right thing and play their partā¦ Complaining, self wallowing and doing nothing but expecting everything is the thing to feel ashamed about (sorry but its the truth ) so stand up and be counted. We canāt even persuade new fellow cases of the numbers, visibility is key, step up and be men. This will help in many ways and may even bring a feeling of self worth back.
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(Raises hand) Count me hereā¦
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Again, going by the criteria set by the foundation, I believe many people here would probably not fix the PFS diagnosis(I.E, The problem is present for ā„3 months after stopping treatment.). Something as simple as this could go a long way in examining who has PFS and making sure people arenāt doing something prematurely to their body(I.E taking unnecessary supplements) that could pontentally cause side effects.
I completely with you, again no criticism. I just see so much potential with this form in a way to voice our issues.
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All public forums Iām aware of are of limited use for emotional support, due to the stigmatizing nature of the condition and poor prognosis. I personally try to actively think about this as little as I can most of the time, which doesnāt lend itself to offering direct help.
If no one has DMed here you might try submitting your contact info to Philip Roberts at the PFS Foundation so he can mass email people who have volunteered to respond. Iāve not tried it myself. A non-PFS specific setting such as a depression support group or public āwarm lineā may be another option.
I should add that I am thankful to the staff of this site for enabling all of us to post here, however disheartening some of the discussions may become.
There really arenāt reliable statistics because there is no known diagnostic marker for our condition, so all available population data is from self reports. The only studies with statistically meaningful controlled data are the original clinical trials, which failed to detect anything conclusive (either due to the condition being rare, or other flaws in the design of said trials). There were cases with persistent ED in the trials but the data collected was not sufficient to characterize anyone as having what we now call PFS.
I personally think that uncomplicated cases with issues persisting more than 6 months are rare (less than 1%). However, given millions of prescriptions, that is adequate to explain the thousands of self reports that are not reflected in the clinical trial data. I believe this is Dr. Michael Irwigās position as well.
I would certainly encourage everyone to submit a report of their symptoms to their respective regulator. The FDA is sadly not in a position of leadership on this issue - thankfully regulators in other countries have been more receptive. I am hopeful that perceptions will change as more and more countries revisit their consumer labeling, but we need to keep pushing.
If you are trying to convince people you know, links to PFS Network or finasterideinfo.org may be convincing.
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I understand this, but what Iām trying to say is all Iāve seen is people given medical advice to others and theyāre not even doctors. Also reading lab reports of others without know all of thier possible medical conditions, thatās dangerous.
For example even before finestride already had documented mental health issues(anxiety)
As a matter of fact in Dr. Michael Irwig 2014 study in which 24 people was examining, 6 people after taking finestride showed being very low in testosterone or DHT or both. But since there was no previous test before finestride nothing conclusion could have been made.
Unfortunately thatās unacceptable, for something like pfs for everyone suffering we need people to continue to voice our suffering. On this website I have seen 7000 people who have made a account, imagine if all 7000 collective shout our problems. The FDA and new media would have no choice but to take notice if a headline read 7000 people effected by finestride. I understand your pain, but unfortunately thatās not a option
Whatās the difference whether a person had anxiety before developing PFS, whether they are sharing their experience with various treatments (this forum doesnāt allow direct medical advice,) or that the protocol of some of the previous PFS research wasnāt entirely comprehensive?
This sounds like nothing but fruitless complaining about the community and the way this forum is managed.
Iām asking straightforwardly, do you have any suggestions or constructive criticism to offer?
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Blaming the forum is one of the stages of PFS grief. Iām up to āblame the universeā. Itās very existential.
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As all my dear elderly friends @JimWildman, @mstone, @LazarusRy mentioned we detiorate away to a permanent sleeping state. So many others are sitting in wheelchairs or spent their days totally bedbound. So many others suffering like hell. Young boys crying for help or just to be heard. But they donāt show up here or anywhere, no more.
Because itās totally unvouge to talk about severe issues in a clean recovery spa world with work out, healthy diates, effective hormone cycles, sex multiple times and morning woods, the daily recovery, the daily theory and protocols, so thatās what Iām talking all the time the wishful thinking reality and the awful reality of this disease are two totally different and incompatible entities meanwhile. A little return to reality would be helpful.
Even all the huge engagement of little community forcing incredible things in research, regulation and awarness isnāt vouge in the recovery spa, because there it seems to be only one more hormon cycle between ED and shrinkage and the recovery lands promised multiple times, with the āmenange a trois and seven times in a row with shijat saltā.
But what can be done?
First a chat group for speaking out for the severe cases not feeling ashamed, lovley support and all who want to speak out free. This idea was positive moderated but Iām in a to miserable state to manage it.
Second, I saw many animations how epigenetic regulation functions. I dream about an animation the cell, the hormones, the 5ar, the AR activation, the docking to the DNA, the feedback to the AR genes, zooming into the location, the epigenetic landscape, the potential mechanism. All to take more interested in the boat.
A regular feedback from the groups to the campaigns what have been done already to give a second opinion to have an outlook from desperation medication to a goal oriented aproach for the younger and hopeful ones.
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I will agree that the forum does not have a great image here.
Part of this is because the forum is many years old and the posting rules have changed over time. In many cases, old posts that predate the latest restrictions on self-reporting and theorizing have not been re-moderated. I donāt think thereās an easy way to address this, short of adding a disclaimer to the page header for every thread that predates the new rules.