For those who crashed from ALCAR or any other supplements after being progressively improving, how long it takes to come back to the baseline you weee before this crash, I was nearly 80%. but due to lack of knowledge and not knowing that the improvement aren’t linear I took the ALCAR in one of my (bad days) and horribly crashed, then I knewed that it’s one of the most dangerous things to take while you have PFS and the regret is killing me because I am not taking any supplements without researching about it everywhere and this is the only time i took a supplemental without research, literally the only time..
It gave me a crash that I think it’s double or triple worse than how the intial PFS Crash was.

Kindly if you have negative comment just don’t reply I don’t need any negativity now I am already regretting hundred times a day taking this ALCAR.

I’m going to finally get a Doppler done and see if I have a Venus leak or fibrosis then I will know the truth. Enough coping about lifestyle and diet, if it shows I have a venous leak it’s over and I will get euthanasia.

I swear I'm not lying, I don't understand what it means to feel sexual lust towards women, to find them sexually attractive. Sometimes I see sexually explicit posts on social media, from women to men, writing about how sexually aroused they are, and I don't even remember what that means anymore. I was in a terrible state for 17 months with a damaged penis. Maybe in the coming years I'll be functional, even if not fully, but I'll be very sad about the years I lost.

So I recently recovered from severe depression from Fin, But I still feel fatigued everyday even after sleep is this normal?

Those who recovered or had any sort of recovery. Can you please share how bad the journey was and what protocol did you follow and how long did it take.

I’m loosing hope.

https://www.reddit.com/r/FinasterideSyndrome/s/q9Qv2HiTxP

i can’t even do this shit anymore though some people will say i am not a severe case but my mind is so fucked that i don’t know anymore. emotional blunting, anhedonia, contamination OCD, permanent hearing loss and tinnitus. plus i don’t think i could ever work a regular job ever again so i guess ill end up homeless or live in poverty

Did anyone else have Achilles pain, heel pain, or posterior calf pain while taking the drug or when you stop it?

If there is specific timeline of the with PFS onset?

is it changed or it same as at beginning?

how do you describe this pain?

what make it worse?

any alternations in intensity, is it correlate with other PFS symptoms?

I’ve had PFS since 2003 and was part of the first ever yahoo w hat that consisted of a few dozen people suffering from PFS. After decades of suffering and seeing people lose their minds and their lives from PFS it is strange to say I’ve made huge progress in the last years or so and am now mostly free of PFS.

We would like to share an update on the progress of our scientific research, along with a new opportunity for patients to contribute to further research into PFS.

Scientific Research Update

We are pleased to report that we are well advanced in preparing our first scientific manuscript for publication.

Our research team is currently preparing the figures and writing the interpretation of the findings, with our collaborators at the University of Kiel working closely alongside Dr Chiara Lanzuolo's team to finalise the manuscript.

We will notify our community as soon as the paper has been submitted for publication.

While we cannot discuss specific findings before publication, we can share that our research team is encouraged by the results. We are hopeful that this work will help establish a stronger scientific foundation for understanding PFS, opening the door to more informed, targeted research into the condition.

More broadly, we hope these findings will contribute to a meaningful shift in how PFS is understood and approached by the scientific and clinical communities.

We are also preparing a second manuscript, which we hope to submit following the first, while discussions around future research are already underway.

Although the publication process can be unpredictable, we are encouraged by the progress being made and the opportunities that may emerge from this work. We will continue to share updates as more concrete information becomes available.

New Research Opportunity: Documenting Patient Experiences

In the meantime, a promising opportunity for further collaboration has emerged through our research partners at the University of Kiel.

A team of historians at Charité Berlin, one of Germany's leading university medical institutions, led by Professor Birgit Nemec, is conducting an oral history project exploring people's experiences with finasteride and PFS.

The researchers are based at the Institute for the History of Medicine and Ethics in Medicine at Charité Berlin, as part of the Collaborative Research Center SexDiversity.

Their aim is to document and preserve the perspectives of people living with PFS, making these experiences more visible and available for future biomedical research, medical education and public discussion.

We believe this work has significance beyond documenting individual experiences.

One of PFS Network's broader objectives is to help change how PFS is represented and understood in scientific literature. Publishing rigorous accounts of patients' lived experiences can help bring greater recognition to the severity and complexity of the condition, while improving awareness among clinicians of the potentially significant and lasting harms reported by patients.

There may also be opportunities to connect this project with the work of our Kiel research group through a broader scientific publication. Such collaborations could potentially support future grant applications, helping establish funding pathways for both molecular and qualitative research into PFS.

These possibilities remain exploratory, but we are encouraged by the growing interest in examining PFS from multiple scientific perspectives.

Invitation to Participate

We are currently seeking 3–5 patients who may be interested in participating in the Charité Berlin oral history project.

The research team is particularly interested in hearing from a diverse range of individuals, reflecting different backgrounds and experiences of the condition.

Participation would involve an interview about your experiences with finasteride and PFS. Please be aware that participants would need to be willing to share their experiences on the record, with further details about the interview process and how their accounts may be used to be provided before participation.

If you are interested in being considered, please reply to this post expressing your interest, or send us a Mod Message. We will review expressions of interest and coordinate with the research team regarding potential participants.

Looking Ahead

We recognise how long many in our community have waited for meaningful scientific progress. As patients affected by the disease, we have also long awaited progress.

While there is still much work to be done, we believe the research now underway represents an important opportunity to advance our understanding of PFS and build a stronger foundation for more targeted future investigation.

Our priority remains supporting credible, rigorous scientific research that can ultimately improve recognition, understanding and, we hope, lead towards effective treatments for those affected.

Thank you for your continued patience, trust and support. We look forward to sharing more when we are in a position to do so.

Take care,

Mitch & PFS Network team

has anyone tried LSD with this condition?

I’ll start saying that i’m a big believer of the gut theory. And I’ll go as far as saying ALL of the problems of this conditions are caused by severe dysbiosis (there is also an official study on pubmed showing consistently the same dysbiotic traits in all PFS patients compared to healthy control). Also there are many people with gut problems and dysbiosis Who never used finaateride but show the same symptoms. Yesterday before sleeping i took a mix of probiotics, more than the standard dose (like 3-4 doses, various lacobacillus sp. + bifidobacteria) and this morning i felt really strange. Like if life had color again. I felt a bit happy. And horny, i was at work and i had continuos sexual thoughs and i wanted to be close to girls and talk to people. It was strange, and at first i didn’t even remember i took the probiotics so i doubt its a placebo. I realized it this afternoon. Now i’m back at anedonic baseline, which is my worst symptom (i couldn’t care less about ED since i kinda like the idea of an implant that can never fail even with anxiety). I’ll esperimento again and see of it was just a coincidence , but I’m sure I’ll try an FMT and let yall know.

Think I’m at the stage where I’m gonna try some stuff, seen a lot of good with hcg. I’m also aware it fully puts ur pituitary to sleep, what I’m afraid of is if I crash or if it just doesn’t work I’m gonna end up with another issue of trying to get my natural production back to normal. Is it easier to recover from than anabolics for example. Any advice will be greatly appreciated. Hope everyone is doing well too. Cheers guys

So to cut a long story short, the first time i ever did coke i felt the effects, then 3 days later i started taking lionsmane, i don't know when my symptoms started but it was within the first month of me taking lionsmane, in this month i was also doing cocaine and drinking alchol. I have no idea what one of the 3 caused my symptoms as I can't really pinpoint it as its all so blurry but in the beginning i remember blaming the lionsmane for my symptoms. After spending alot of time in the lionsmane recovery sub l've noticed that the symptoms i have differ greatly to the symptoms others have from lionsmane, genital numbness being one of them, alot of the people in that subreddit do not seem to be suffering from genital numbness hence why im now thinking it has something to do with the combination that i took at the time and not just lionsmane. My symptoms consist of emotional blunting, genital numbness, reduced cognition, blank dreams, reduced pain sensations (i can still feel pain but it seems blunted too), blunted need to urinate, unable to daydream, unable to think properly, the list goes on. Ive been dealing with these symptoms for 2.6 years and i feel so alone as i cant find any stories like mine. Ive spoken to Al alot about this and it suggests my nervous system has and receptors have basically downregulated and are in a frozen protective state, obviously I can't know for sure whats going on, id like to believe thats the reason as it is reversible but i keep doubting it as even though I assume its the combination of what i took im still worried that this is some rare effect from taking lionsmane and obviously lionsmane has hardly any research.

I heard that there some kind of subset of people report worseing of symptoms after MRI, so can you tell what area was targeted by MRI spine cord or brain? is there someone who get worse after ct scan as well?

I was already fixed, but I decided to take fenugreek for libido not knowing it had 5ar inhibitor properties. How could I be so stupid!

Anyway I had been taking fenugreek on and off for a month, I got drunk which has never affected my PFS, and I woke up with a hangover the next day feeling very off. I had brain fog and anxiety. No sexual sides, I'm still able to get hard. And also I have no insomnia, I actually have the opposite. I've been sleeping and taking way more naps than usual.

Idk if it's my hypochondria since I am a huge hypochondriac or if it really is a crash. It gets worse the more I think about it but idk. I'm crashing out. Are second crashes worse than the 1st ones? Has anyone recovered from a second crash? How long did it take?

I'm really just losing hope here. I thought I was done with this mess.

Title says it all. A lot of people regret taking the risk to save their hair, but imagine if you destroyed your life with Fin in an attempt to preserve something that wasn’t even going yet, only for the PFS to bring about the exact opposite effect for the very first time!

No imagination needed here 😎 started Fin at 25 with essentially no visible hair loss whatsoever, minor hairline recession with nothing noticeable at the temples. 8 months later I’m getting pretty close to Norwood 3 and I can’t help but wonder if starting Fin unnecessarily is going to be the difference between going bald at 40+ and going bald in the next year or two. If my severe insomnia and cortisol dysregulation post-Fin have anything to say about it, gonna be the latter 🙃

From the bottom of my heart, fuck Merck, fuck Him’s, and fuck every other organization promoting this shit as essentially “risk-free”. What I would do to go back in time just a year ago.

What I refuse to understand is how is this chemically biologically possible that once I stopped finasteride and developed PFS my hairloss has completely reversed and hair started growing. My scalp was always visible throug my hair, I had extreme Dht itchiness whereas now my hair is the thickest it’s ever been. But at the same time I have 0 sexual symptoms, I can get hard as when I was a teenager but I only have mental symptoms and I want my hairloss to restart which will indicate that I have recovered and body is working as before.

I have thought through many theories but non of them makes sense, okay maybe it is dna methylation on a tissue level but then my hair in some spots would still falling considering that my dht and testosterone, oestrogen are all normal. The only theory that I have brainstormed about is possible systemic inflammation or autoimmune response.

I have posted about this before but posting again as it completely does not makes sense, you stop finasteride your hormones go back to normal but somehow you start growing hair???!?! Howw?