I wanted to add that I think bringing the theories forum back is the right move.
I agree that it’s dangerous, most people should probably do nothing after getting PFS because they’re most likely going to make their symptoms worse. But I think one way to combat this is to just have a disclaimer stating exactly that. Drugs like progesterone are probably going give you more side effects than you had. Same with using drugs like melatonin and goat weed to improve sleep and ED problems. Melatonin can give you insomnia and goat weed can make you actually blind and giving you hearing loss along with all other PDE4 inhibitors, including Cialis which I mentioned earlier in this topic that I wasn’t aware of it having permanent side effects when it definitely does. But there are some genuine cases where a specific treatment can help make someone’s life more bearable, maybe PDE4 inhibitors can save your penile tissue from being damaged while you wait for it to heal and you’re comfortable taking the risks associated with it, so you can’t just dismiss potential treatments altogether. Solution is put a strong disclaimer at the top and let people make their own decisions.
My biggest complaint with this site and the PFS Foundation is the secrecy involved behind the scenes in trying to figure out what is going on with our bodies and how to fix us. After over ten years with PFS I still have very little idea what the leading theories on the causes of our illness are. The Italian study seemed to provide the most insight with changes in neurosteroid levels and pudental nerve damage. Yes we need hard scientific data but it only helps if the cure comes in my lifetime.
The studies do not provide theories on why/what mechanism caused the neurosteroid levels to change or how to correct them or how to correct pudental nerve damage. It is probably beyond the scope of this site and maybe even the foundation, but in a perfect world we should like to see a world class expert hired to review all of the studies and give an opinion on root cause and possible path to fix said root causes.
We are all impatient we the slow progress on the scientific front. To get research done, papers written, peer reviewed, and published takes years, and we are just now scratching the surface. It’s like trying to cure cancer on a shoestring budget. The Italians seem to be the only ones making any headway for us. I’m glad the foundation is focusing funding on them now. I think the research and its objectives should be more open so that can all understand what theories are being investigated, what the roadmap to finding a cure is. If people knew more of what was going on they would be more motivated to donate,
We have all tried to make the best of our lives with pfs which is why this site has fallen into disuse. People have had to accept that life moves on with or without a cure. If the foundation or an independent expert were to make recommendations on things to try to cure us people would be lining up around the block to try it. People have been experimenting for years with everything under the stars to cure themselves based on little more than Google searches and charletans like CDnuts for advice.
Yes we need hard science but we also need to be informed. Awor used to speculate on what he thought was the cause of our problems, he no longer does that which is ok. But how about if he or someone else we hire examine the studies and break the data down to a level a non medical person like myself can understand. To this day I have seen very little discussion on this site about the Italian study or what our next steps will or should be.
What frustrates me most is they almost never mention the physical effects…I did not even get sexual sides but devastating physical changes and fluid retention…Can’t live life normally now the physical and cosmetic damage is unreal I look like a different man now than before I took and stopped the drug…All they focus on is mental and sexual but imo the physical is the worst and the most life altering…IE…50lbs or more of weight gain, hair brittle dry and destroyed, dry skin, greying of facial, scalp and body hair and unreal fatigue with no capacity for exercise…Long distance runner who now can’t even run 1 mile with out stopping…Some of this occurs while taking the med such as the greying of facial and chest hair…Scalp hair also greys and drys…Then after stopping huge physical changes begin and they capacity to run ie exercise begins deminishing every week…
I am having problems with physical function and huge mobility issues…Just getting in and out of a car carrying all this water around your waist is such a handi cap and strain on the back and body…And this is some one who was a runner and would drive an hour or more one way to work at a construction site for 10hrs 4 or 5 days a week…No problems…now all I can do to get through the day like this doing next to nothing…
I am pushing for the foundation to acknowledge bone loss in the jaw, chin and cheekbones. I also hope that they will acknowledge facial collagen loss (i.e. irreversible facial fat loss) which absurdly enough can go hand in hand with a fat increase in the midsection (i.e. you look gaunt despite gaining weight!). They have acknowledged weight gain, dry and thinning skin as well as chronic fatique on their website though:
Under Metabolism it lists increased fat deposition and obesity.
Under Skin it also acknowledges decreased oil and sebum production.
They also acknowledge chronic fatique.
So at least as far as your symptoms are concerned the foundation is aware of them. What the studies creators/ scientists know of I dont know but I guess they are aware of the symptom list linked to above (i.e. PFS foundations symptom list).
You are barking up the wrong tree. The challenge at hand is to get the medical community to recognize the full symptom profile of PFS. The only way we are going to achieve this is by putting the facts out for everyone to see, in a structured way. I see this as a strategic priority for this community.
Our current challenge is that the full PFS symptom profile is buried in 100K+ posts on this site. I want to add a feature to our future platform that will allow us “patients” to characterize what we are dealing with in a structured way. By structured I mean database based, so we can the publish a statistical symptom profile of our over 5K members of this site. My hope further is, that even the SolvePFS guys will come back to at least fill out their profile (we need this data in one place, otherwise it’s not very powerful). Unfortunately, there is no off the shelf solution that will satisfy this requirement, at least not that I am aware of.
In the past 1 or so months I finally had some time to work on the relaunch of propeciahelp.com. I have an approach and some code to solve the characterization requirement. But I can’t do it all on my own. The core of the new platform is based on Rails (RoR). If you are a Rails developer and would like to give me a hand, I would VERY much appreciate your help. If you would like to join the effort, please pm me.
Thanks for your efforts awor. I think those two efforts do not exclude each other. If the foundation receives enough reports on a symptom, i.e. confirmations by PFS-sufferers that they have experienced it, they will add the missing symptom to their list. A few symptoms are still missing on the foundations official list; it names almost all of them already though.
The ones that are missing are:
facial collagen loss.
bone loss in the jaw, cheekbones and chin.
Altered hair texture.
Shrinking of the adams apple
slower beard growth.
Maybe more, but those are the ones I can think off at the top of my head.
I would strongly advise the new forum to inspire itself in existing successfull solutions such as forums.phoenixrising.me
I will further elaborate on this small post but for a start, id just say we desperatly need rules in this forum and the very first one must be 1) No hate speech. Anyone breaching this rule can be banned.
This will also indirectly solve the problem of people dividing the community and instigating against ongoing research being done for the benefit of us all, since the people breaching 1) are also the most likely to have this sort of behaviour.
There is way too much abusive violent and divisive behaviour in these forums.
I think that we do have enough platforms (ph, solvepfs…)
By creating a new platform you are forcing the community to divide.
Instead of that, a list of possible treatments so far, collected from lots of posts, would be more helpful.
Here is such a list ( supplements not mentioned):
People who are aggressively pronouncing how fast and well they are recovering and writing hundreds of lines every week, are not credible and should be banned. Those stories are fake. I guess what the reason is why they are acting like that. Just use your brain.
noprop this is the official platform. You’re right about people who created new platform dividing the community. But those platforms you mention were created to run away from this one, and they did divide the community.
I know!
The problem is, that lots of information which can help is widespread all over this platform.
I would like to check out some hard stuff, too and report.
As I already mentioned to someone else: if 50 people shoot themselves in front of the hq, there would be a cure very soon.
Dht blocking drugs are welcome and pushed, but dht pushing drugs are blocked (androhard).
My gosh, why the hell did I take this shit…
Some members are telling fake recovery stories mentioning they have those protocols from solvepfs and hack.
I am not quite sure but would be banning them a solution as their main goal is to divide the community and give this platform less power according to “divide et impera”. I am not sure who or what is behind them. Just my opinion. Best
I think the site is still a great repository of information that has been like a life vest for countless PFS sufferers in their darkest times.
What is good about the site:
Contains a trove of information and shared experiences from users who have been suffering continual symptoms caused by finasteride.
Has helped establish and fund studies into the post finasteride syndrome.
Contains a lot of information on people’s experiences with different treatment regimes that has helped to guide people through the medical maze of what may help them and also what can do more harm.
The forum has been organised around different theories behind PFS which has allowed members to explore each of these through dialogue with other members.
What can be improved
I think the forum can be greatly improved in the following 2 areas:
Helping to bridge the digital connections to foster real connections by setting up and informing people of support groups in major countries and cities around the world that people can then join in person. These support groups can then be focussed on researching certain aspects of PFS and reporting the results back to the main organisation.
I feel that the information can be recorded, chategorised and presented better. There have been a lot of developments in data analysis over the past 10 years and this site has a lot of information that can be analysed to help establish some of the common factors, symptoms, blood test results, experiences and treatments if it were organised in a fashion allowing this data analysis to take place. Obviously it is a massive undertaking to try and organise all of this past information however if automatic for,s could be created for entering in the results of any bloood tests taken or treatments tried going forwards then this would greatly assist in this process and could lead to further studies being performed on this data further down the line.
More moderators: Perhaps if moderators were paid for their time then this could help formalise the moderation as a service performed for all members.
Anyways, I wish you all the best in your recovery and again thank you for all your efforts with the site!
Just wanted to give everyone a heads up on the relaunch. We’ve been doing quite a bit of work in the background. If everything goes well, we’ll be ready to relaunch propeciahelp.com on May 19/20. Would you happen to be a graphic design artist? We have a proposal for a new logo, but I wouldn’t mind some competition. If you would like to make us a pitch, please send me a pm.
I would like to share how I’m getting better when the new site comes out. How several guys are getting better. I’m not going to direct anyone to a site. But I’d love for an experimentation section where guys aren’t mocked for experimenting.
I will explain things in best fashion as possible. I would like a place where I can write and guys like PVDL and Axoloti can not mock my ideas. My ideas are experience based and also based off the ideas of several doctors and recovery stories from health issues including PFS, Lyme, CFS, you name it. Also getting a huge amount of help from a website for guys who got sick from pharmaceuticals. I will not name it for the respect of this site.
I want there to be peace between those experimenting and those waiting for a cure. And I want those experimenting (with success or not) to have a place where we can at least update how we are doing and how we are doing so.
I spent 7 months in bed from Dec 2016 to July 2017 with the most severe depression, anxiety, fatigue, impotence, and genital shrinkage imaginable. I came close to ending my life at points during that time period. I was hit severely as anyone by this drug. This is no joking matter what finasteride can do to people. I am not here to mock people that are not trying. I am here to let you guys know that I am getting better, how I’m doing so, how several others are doing so. I am here to spread ideas.
I was banned from solvepfs for “abuse of a member.” I believe I said something to the degree of “I want to punch “” in the face if I see you in person.” I said these things because I feel so strongly about the ability of the human being to come back from this horrible pharmaceutical injury we’ve endured.
I feel bad I said some things in the past on solvepfs and wish I could take them back. This was just when I was getting my “2nd chance of life.” I was angry at guys on sites for posting that there was no cure and no ways of getting better. To be honest, I believed Mew and Awor’s theories for awhile and thought that taking my life was the best case for me because I would be stuck like that forever. Thank god I’m not.
I am so happy for every given day. Life is a gift. I am not recovered, but I am doing about 100000000 times better. Really no other way to put it. I’m sorry if this offends anyone and its not to shove in anybody’s face. Its just the truth.
Anyways, best of luck with the new website guys. I think we all can get better- there is no doubt in my mind. I hope we can all share that day together one day. Hang in there all!
Guys, thanks so much for all your feedback. As you can see, we’ve now completed a major overhaul of the site and forum, about which you can provide any further feedback here: Propeciahelp site news and feedback thread
As such I’ll close this topic. Many thanks to all who shared their thoughts.
