r/FinasterideSyndrome • • May 03 '26

A reminder about our obligation to patient safety

21 Upvotes

In recent months, several patients have contacted us about a significant and seemingly permanent worsening of their condition. We have also seen an uptick in other such reports on our platform and elsewhere, including one report of suicide. Sadly, each of these reports occurred after further therapeutic intervention, many involving apparent disruption of androgen signalling. 

We would firstly like to remind patients to exercise an extreme degree of caution when engaging in such therapeutic interventions, whether either directly or under the care of a physician. One of the key features of this disease is that many patients exhibit a marked susceptibility to further worsening. The clinical record shows this is particularly notable when anti-androgens are involved, or when there are perturbations in androgen signalling. 

Some of the worst reported cases involve patients going back on finasteride or other potent anti-androgens. These cases can report feeling much better at first - in some instances, experiencing full symptom relief - before quickly entering a state which is catastrophically worse. Many of these events preceded suicide. 

We have also seen an uptick in reports proposing very dangerous interventions, such as the following:

The above list only contains dangerous items that we have seen gaining traction recently, and is by no means a conclusive list of substances that should be avoided. If you are unsure whether a substance is anti-androgenic, or whether it is harmful, we advise to err on the side of extreme caution. 

There is a clinical record spanning decades (mostly contained within propeciahelp.com) which shows that anti-androgenic re-exposure is highly dangerous, and that it is not a way out of this condition. 

A reminder of our platform policies

A rule exists on our platforms to prevent patients from prescribing such interventions to other patients. It is simple: Describe, don’t prescribe.

We take this incredibly seriously and it is our number one rule for a reason.

As a charity pursuing meaningful progress towards scientific understanding, we are duty-bound to patient safety. While investigation is underway, we understand this disease affects patients acutely and there is a desperate need for symptomatic relief. 

Our group has managed patient platforms for almost eight years and we are usually responsible for dealing with the fallout of such interventions. Every member of our team has personally encountered multiple suicides. We often see our prescribing rule lamented and ignored by patients, who feel they are adults and can make their own decisions. There historically has been a common sentiment of “things can’t get any worse”, although it has been heartening to see more patients aware of the risks in recent years. 

Moving forward, where available resources permit, we will do our best to place moderator notes on posts & comments that discuss drugs, substances or therapeutic interventions that are known to pose significant risk to patients. Please note that just because a drug/substance doesn't include a mod note, it does not mean it is safe.

A reminder to take care of each other

While scientific progress is our primary focus - and well underway - our second focus is trying to keep everyone in one piece. 

We have all been unfairly burdened with this disease. Living with it, without symptomatic relief, is something that none of us should have to endure. For that reason, we ask you to be kind and take care of each other.

If something has worked for you, that is great, and we are truly thrilled for you. But please be aware that it may be catastrophically damaging for your fellow patients, and act accordingly. 

Please take care of yourselves & each other.

Mitch & PFS Network team


r/FinasterideSyndrome • • Mar 17 '26

PFS Network welcomes new researcher to scientific advisory group

68 Upvotes

We are pleased to welcome Chiara Lanzuolo to the Scientific Advisory Group of the PFS Network.

Dr Lanzuolo is a molecular geneticist with more than two decades of research experience in chromatin biology and epigenetics. She received her PhD in Genetics in 2002 from the École Normale Supérieure de Lyon. Following her doctoral training, she conducted postdoctoral research at the Institute of Genetics and Biophysics and the Institute of Cellular Biology and Neurobiology, where she worked within the Dulbecco Telethon Institute under the supervision of Valerio Orlando. During this period, her research focused on chromatin architecture, nuclear organization, and the epigenetic regulation of gene expression.

In 2012, Dr Lanzuolo was awarded the competitive Futuro in Ricerca grant from the Italian Ministry of Education, University and Research, enabling her to establish an independent research program investigating genome organization and epigenetic regulation in human disease. She later obtained a permanent research position at Italy’s National Research Council and in 2015 joined the National Institute of Molecular Genetics in Milan.

Dr Lanzuolo is internationally recognized for developing SAMMY‑seq, a chromatin-sequencing approach designed to profile genome accessibility and nuclear compartmentalisation. She first described and applied this technique in her 2020 paper, SAMMY‑seq reveals early alteration of heterochromatin and deregulation of bivalent genes in Hutchinson‑Gilford Progeria Syndrome, which demonstrated early disruptions in heterochromatin organisation in Hutchinson‑Gilford Progeria Syndrome.

Dr Lanzuolo has been collaborating with the PFS Network on our first research project, Elucidating Epigenetic Mechanisms as a Cause of Post-Finasteride Syndrome, alongside Dr Nadine Hornig. As part of this work, her laboratory has performed SAMMY-seq analysis on patient-derived and control cells. These results are currently being integrated with RNA-seq and methylation-seq datasets to enable a comprehensive interpretation of potential epigenetic alterations associated with the condition.

The project is progressing well, and the advisory group recently convened for its annual scientific meeting to finalise the analytical framework and publication strategy. We are optimistic that this work will move toward publication in the coming months and will share further updates as they become available.

We are delighted to welcome Dr Lanzuolo to the advisory group and look forward to her continued contributions to this research program.


r/FinasterideSyndrome • • 3h ago

Avoid Cabergoline

3 Upvotes

Endo prescribed for my mildly elevated prolactin and low testosterone. Did not help and made genital numbness, erections, libido worse. Also right after taking it I had the worse derealization, insomnia, dizziness, and anxiety. Just a warning to anyone who is thinking of trying in the future


r/FinasterideSyndrome • • 18h ago

I have been taking finasteride for 5 years and stopped it 7 month ago

6 Upvotes

I was 23 years old when I started finasteride 1 MG proscar every other day and I had been taking it for 6 months.
I had no idea if I had libido issues during that period of time, because I had no partner in that time and I’ve never noticed some drastic loss of interest toward women.

The reason why I stopped, was the fear, that finasteride could cause prostate cancer.

So After 6 month I stopped and there was already passed around 7-8 months since off when I started sexual life with my Girlfriend(GF) and I’ve never noticed any issues regarding libido or ED. So there was around 1.5 year since I stopped finasteride and everything was fine.
Then I wanted to get my hair back again and started taking finasteride again.
After 3-4 months, I remember, I had sex with GF and I noticed my penis dropped during sex, that was first time in my life and I thought I got tired. After that such cases were frequent. I noticed How I lose sex drive and libido over time. Looking naked woman was very weak stimulation for me.
I can compare my libido when you are full of food, you see a lot of delicious food on the table, you know it delirious but don’t feel hungry anymore.
I remember days before fin, I was hungry, I wanted women.

But I was taking it because I was obsessed with my hair loss. The finasteride and minoxidil has miracle effect for my hair.

Now I’m 29 years old, stopped finasteride 7 month ago and I would say, ED got 20% better, libido is 10% better. It fluctuates, there are days I feel slightly horny, and there are days I have zero libido.

I still use minox every other day.
I don’t lose hope, I still fighting.

#PFS #finasteride #ED


r/FinasterideSyndrome • • 20h ago

Coping 2 events have crashed me to complete hell.

8 Upvotes

First and most significant I worked a night shift job for 6 months as well as a lot of bad habits and stress. Literally nuked my dick and energy way worse like an inch loss. Then doing weed finished me off I genuinely wish I could go back to the early days of this condition I still had white semen and my dick still worked enough that sex was possible. Now its like under 4 inches on viagara (6.2 at the peak) and literally is a pencil no thickness.

My mental side effects have mostly recovered but my sexuality has not


r/FinasterideSyndrome • • 5h ago

"PFS" Full Recovery After 6 Months

0 Upvotes

HI all, I'm writing this post because I believe at least a few of you are in the same position as I was a few months back. I genuinely thought I had post finasteride syndrome, but it turns out it was all in my head.

Now I wholeheartedly believe post finasteride syndrome is real, and that most of you probably do have it. I was experiencing some symptoms, mainly including loss of pleasure during sex and GI issues. I now realize I self sabotaged myself into obtaining these symptoms.

I first heard of PFS in a TikTok I watched, 2 months into taking finasteride. I was shocked about how serious the condition was, and proceeded to doomscroll reddit for the next 3 weeks fearing that I would get it.

I was so stressed and scared of all the symptoms I learned about, especially the sexual ones. I jacked my dick multiple times a day for 3 weeks straight to check if everything looked and felt okay. Turns out, if you nonstop touch your dick for 3 weeks straight, you're gonna start to loose some sensation. As soon as I noticed the smallest bit of sensation loss, I convinced myself I had PFS and that my life was over.

Shortly after this, I started experiencing chronic constipation and a burning pain in my stomach. This confirmed (in my head) at the time that I had PFS. With a shit ton of fiber supplements and completely changing my diet, I was able to pass a stool, but it was still extremely difficult. I eventually went to a GI doctor, and he recommended a colonoscopy to rule out colon cancer.

This is where my mentality started to turn around. After the doctor found nothing during my colonoscopy, I started to calm down a bit. I started to accept the "reality" that I had some mild PFS symptoms, and, if they didn't go away, I would still be able to function well enough. Soon after this, I went on a group vacation to a resort out of the country with some old friends. I had an amazing time and felt normal for the first time in a while. I also didn't get a chance to touch my dick at all.

Finally, I get back from the trip and get to see my girlfriend for the first time in a week. We have sex and it is the most pleasurable its felt for many months (go figure). I start to believe, maybe this whole PFS thing was in my head. In the following weeks, all the sex we had felt much better than before. I also started to taper off of my fiber supplements to see if my GI symptoms would come back. Unsurprisingly, my stomach and bowel movements are pretty much back to normal.

Now I have always been a mildly autistic, OCD, type A person who always pays attention to detail. If you fit this archetype, I really encourage you to reflect on the toll you are putting on yourself mentally, and if that may be causing any of your symptoms. Browsing this sub made me feel absolutely terrible 24/7, and getting away from it drastically improved my mental health.

For those of you who actually have PFS, I know you probably won't like this post. I just can't help but think that there has to be a few members here who were in my boat a few months ago.


r/FinasterideSyndrome • • 21h ago

Receding gums.

7 Upvotes

Is receding gums are permanent symptoms from pfs and anyone can heal with this.

Please suggest anything that can help with this symptoms or does it go away or this is lifetime symptoms


r/FinasterideSyndrome • • 13h ago

Question Little proposal for PSSD/PFS etc community

0 Upvotes

Can we fully replace how we use *Crush* terminology, i propose use Crush in case when symptoms appears for frist time or got permanently worse after something like (taken again SSRI's/5ari and got crushed) and to other stuff like (i got worse after some kind of 'X' supplement vitamins etc), refer this to ("Flare", "Flare-up") when PSSD symptoms got worse for some time, but overtime they get back to baseline, this can reduse confusion overall without affecting meaning and give more precise meaning what happened, especially who look retrospective -comments/reports


r/FinasterideSyndrome • • 1d ago

PFS memes

Post image
29 Upvotes

I feel like we could all use a little bit of humor among all this darkness


r/FinasterideSyndrome • • 20h ago

Is caffeine a net negative on recovery?

1 Upvotes

I pretty much have never been able to give it up longer than 30 days. Had this dysfunction for 4 years is there any chance this is crashing me?

Caffeine helps me function with all the brain fog and exhaustion which is why its so hard to give up.


r/FinasterideSyndrome • • 21h ago

has hcg helped you? Did you have side effects from hcg?

0 Upvotes

Has hcg helped erection quality, libido, derealization ? Did you have side effects from taking hcg?


r/FinasterideSyndrome • • 1d ago

Did memory improve for those that recovered?

7 Upvotes

I feel like my short term memory isn't as good anymore. Anything that helped recover that? Any vitamins or anything


r/FinasterideSyndrome • • 1d ago

Calculated torture⁉️

4 Upvotes

The question is if pfs are something planned or if it’s not.

IMO you need to be seriously naive to think that a guy with perfect health is rotting up on every spect of his body because of a pill to fix your hair.

In the end the only problem mankind has is that we are to many people on earth so is pfs just something unlucky or is it a calculated torture from inside from the people that really runs the society.

And is it someone with a great mind willing to look into it, maybe we will get some actual answers🤔

Im from Norway so do not mind my English.


r/FinasterideSyndrome • • 1d ago

Does pelvic floor muscle tension cause erectile dysfunction?"

2 Upvotes

​"Has anyone here treated their pelvic floor tension and experienced an improvement in their erectile dysfunction?"


r/FinasterideSyndrome • • 1d ago

Is any improvement secured?

5 Upvotes

If my symptoms improved after PFS at 8 months, but for the past month I've gone through a major period of stress and now—even though it's over—I feel like I'm back to day 0 post-cessation? Please reassure me, is this temporary? Did the crash from this intense stress period completely wipe out the partial recovery I made over those 8 months?"


r/FinasterideSyndrome • • 1d ago

Symptoms My supplement stack (22M)

Post image
0 Upvotes

These are the supplements I’ve been taking to try and aid with the side effects Ive been experiencing from accutane damage (brain fog, sexual dysfunction, Anhedonia)

Recently started lithium orotate, so I’m excited to see if that does anything

Let me know your thoughts 💭


r/FinasterideSyndrome • • 1d ago

How screwed am I? By blood report after experiencing painful loud heart thuds, panic attacks, doom, no erectrions.

3 Upvotes

ADRENOCORTICOTROPIC HORMONE (ACTH): 19.9 pg/mL (Lab Normal: < 46 pg/mL)

PROLACTIN: 17.7 ng/mL (Lab Normal: Men : 4.04-15.2 ng/ml)

TESTOSTERONE: 526.63 ng/dL (Lab Normal 240.24 - 870.68 ng/dL)

FREE TESTOSTERONE: 19.92 pg/mL (Lab Normal: 1.00 - 28.28)

SHBG: 17 nmol/L(Lab normal: 10 - 57 nmol/L)

ESTRADIOL/OESTROGEN (E2): 23 pg/ml (Lab Normal Males : 11 - 44 pg/mL)

DHEA - SULPHATE (DHEAS): 238.8 µg/dL (Lab Normal 106-464)

HOMOCYSTEINE: 18.13 µmol/L (Lab normal: <15)


r/FinasterideSyndrome • • 1d ago

Please help me😞

2 Upvotes

Please help me, I’m begging you. 😔 I’m asking from the bottom of my heart.

My only symptoms are erectile dysfunction when standing and problems with ejaculation when standing.

I stopped taking finasteride 8 months ago.

I’m mentally exhausted. For an entire week, I’ve been sleeping under the effects of Valium and reading people’s stories here.

Is there genuine hope for recovery? Or at least for improving by 70%?

Eight full months have passed, and I’m still struggling.

Has anyone recovered from these specific symptoms? Please share your experiences with me. I desperately need some hope.

I live in a third-world country where nobody seems to know anything about post-finasteride syndrome. I feel completely lost, with very little access to doctors who understand this condition, and I don’t know where to turn for help. It makes this whole experience even more frightening and isolating.

Please, if anyone has experienced something similar and recovered or significantly improved, I would be incredibly grateful to hear your story.


r/FinasterideSyndrome • • 2d ago

Our job perspectives

12 Upvotes

Hello, I know many guys here are struggling to find a job, while still there are employed / running their own business and may share their experience.

I also used to work for big4 and IT company, presently, trying to adjust to new reality.

Some are not into IT / tech, found themselves in security jobs, photographer, etc

I believe that would be useful survival guide at job market

Also, as far as I know some even managed to receive constant social/security assistance


r/FinasterideSyndrome • • 1d ago

Has anyone experienced ejaculation problems and recovered?

1 Upvotes

Has anyone experienced ejaculation problems and recovered?

My ejaculation has lost its force. Instead of shooting out forcefully, the semen just flows out slowly in one continuous stream, almost like a single mass.

Has anyone experienced this and recovered? I’d really appreciate hearing about your experiences


r/FinasterideSyndrome • • 2d ago

Symptoms Dutasteride / Finasteride made me dumber

30 Upvotes

I will never be able to explain fully how devastating it was for my brain, my thougths are 10x slower , i can't mantain focus for long anymore, i always run out of words etc... having weak erections is really nothing compared to the brain damage it has done to me. I wish i will be better in a next life


r/FinasterideSyndrome • • 1d ago

My libido is very high

1 Upvotes

الكتابة

My libido is very high, but my problem is weak erections.

I don’t experience any psychological symptoms or brain fog. My only issues are erectile dysfunction and premature ejaculation.

I stopped taking finasteride 8 months ago. Previously, whenever I stopped taking it, I would return to normal within a month. But this time, it’s been 8 months, and I still haven’t returned to normal.

Clarify the timeline and dosage

Make the medical wording more precise

Add a clear question for reader


r/FinasterideSyndrome • • 2d ago

I Tried mushroom choclate it did helped with sexual performance and timing !! Any one with similar experience?

3 Upvotes

Please share experience


r/FinasterideSyndrome • • 1d ago

Smoking Ciggaretes

0 Upvotes

Are there any regular smokers here and how does smoking affect your symptoms?


r/FinasterideSyndrome • • 2d ago

Question glycinate headache

0 Upvotes

Do you experience headache after taking glycinate for sleep??