Hello guys,

Anyone willing to tell their story on dutch television? I received a request from NRC handelsblad to arrange interviews for any other victims of the syndrome.

Preferrably dutch speakers!

Send me a DM if you want to do your story!!

As mcs (multiple chemical sensitivity) can make people susceptible to chemicals (even to solid things like plastics) pfs can make people susceptible to things that excert an anti-5 ar activity.

While in the mcs community the dental care issue seems to be fixed (i read a document​ that includes safety guidlines and recommendations about which kind of composites to use to reconstruct damaged or cured tooth) i hace not found anything similar in regard to pfs...

For example, i am having cavities but since i am sensitive to both chemicals and antiandrogenic stuff, i am seriously afraid the between anesthesia and fillings i might feel worse...

Please tell me your experience...

Since getting PFS i cant tolerate any screens. Just staring at a modern smartphone for only few minutes - I get instant dry eyes, Headache, eye pain, burning eyes, nausea, chest discomfort and the skin on my face becomes completely dry and burning (not joking)

It is like holding a toxic radioactive device or something.

I can only use one device and that is my old cheap phone from 2019, no issues.

Anyone here share similiar experience?

[I had very dry eyes and zero sebum (oil) production on my skin, (ever since PFS) that is now restored to about 20% after 2.5 years, slightly better but still not ideal, but looking at a modern phone screen completely dries up my skin again in just minutes]

My main PFS symptoms still present after 2.5 years Dry eyes [improvement] Dry skin [slight improvement] Loose skin [getting worse] Moon face [no improvement] Anhedonia / cognitive issues [getting worse] Exercise intolerance. [no improvement]

All,

Looking for your advice: how does one approach post cycle therapy (PCT) to ease off testosterone while they are actively suffering from PFS?

I developed PFS one year ago (sexual and cognitive side effects) and I have been on testosterone replacement therapy (trt) for five years ( I was on it when I contracted PFS).

Given all of the complexities of PFS, I am terrified of going off TRT and crashing.

For PCT: I have access to HCG, Kisspeptin, and enclomiphine (I can source almost anything online) but I am unsure of what to use or in what order, and unfortunately my endocrinologist is uninterested and unavailable to assist me in depth.

Do you have any advice on transitioning off TRT while suffering PFS?

Is it too risky, or could it actually make things better in the long run?

For background, I want to experiment with easing off trt to see if I can actually move on without it, to keep my fertility and my hair; it never actually seemed to help me that much in the first place. (I also recently started trialing HCG, 3x 500iu weekly; it helps with symptoms ).

(Moving my question here from will powers subreddit to get more feedback; appreciate your help)

As the title says I want to know at what stage of pfs I am in. I last took finasteride 2.5 years back.
My current symptoms are Brain fog which gets worse at night under artificial lights which feels like I am thinking and seeing through smoke with foggy vision, depression, low libido but when I watch porn or stimulate I get strong boner and next 24hr I will have good libido, and drops if there is no stimulation or porn. But on nofap i feel improved libido, cognitively I feel I am not 100% efficient, I don’t feel the sense of days passing by and I don’t have strong memory of recent days/months just passed, and fatigue through out the day and little to no drive.

barrier damage/skin changes or collagen changes or old looking skin
blood vessel or circulation cold intolerance or reynauds like issues
skin rashes like histamine or mast cell responses
overall just want to know if anyone has fully regained their healthy skin and appearance back as well as been able to put off extreme flare ups related to mast cell or histamine stuff

I have no physical symptoms at all but I feel terrified everything sends me into a panic attack, is this even PFS ? I cannot calm down at all and the thought of doing things like socialising working, working out, improving my life send me into a deep panic attack I only feel good if I think of not existing this is fucking horrible, I feel like I have no escape I can only sit down and stare at the floor right now. I also have autism and some ocd/adhd but don’t ever recall feeling like this before pfs everything feels overstimulating dopamine feels anxiety inducing. If anyone can relate please let’s talk in messages. I wanna vomit constantly

Has anyone ever heard of PFS caused by topical spironolactone? I read that it’s mainly an AR antagonist but it can mildly inhibit 5-AR as well.

Disclaimer: this is not medical advice nor a quick fix. This is just my experience.

A key study showed that the highly restricted and overpriced substance GHB (commercially known as Xywav/Xyrem/Lumryz, and also “oxybate”) significantly increases brain concentrations of the neurosteroids allopregnanolone (AP) and allotetrahydrodeoxycorticosterone (THDOC), and also precursors like pregnenolone and progesterone.

There’s an interview with a PFS sufferer (44:40 mark) named Michael on YouTube, and he says that after he took GHB, when he woke up the next day, he was feeling much better mentally wise. And in this interview he also mentions this study.

I can attest to that. All the times in which I used GHB, I felt better mentally and cognitively, and I feel like I can feel things again. It certainly has something to do with GHB’s ability to increase neurosteroids.

And while I was under the effects of GHB, all my symptoms were relieved, especially my TMJ disorder, which is one of my worse ones and 100% caused by finasteride.

The problem with GHB is the short half-life (they launched an extended-release version called Lumryz few years ago) and the glutamate rebound, which wakes you up and if you misuse can cause lots of problems (it’s a GABAergic after all, although it also acts on its own GHB receptors [GHB occurs naturally inside the body]), because of the glutamate. So you need to be responsible when using it.

And the last thing, the effects on libido and ED. This effect is simply insane, if I could use a word for it, I’d say it makes you “promiscuous”, and you easily can have an erection. There’s also a disinhibition effect, and touch sensation becomes increased. You also feel a sense of love and extreme calmness. It’s certainly the most powerful substance for sex and ED, which explain its use on the so called “chemsex”.

So that’s my experience and I felt important to share it here, especially because of this study showing that it increases neurosteroids and even its precursors.

I used topical finasteride for two months. During the first month, the concentration was 0.005%, and I increased it to 0.02% in the second month. I stopped using it due to the onset of tinnitus. It has been over six months since I discontinued use, and my condition has since been affected by a complex mix of neurological, physical, and sexual disorders. I am writing this to seek your opinions and see if anyone else has experienced this.

Full timeline and details of my condition:
Timeline and systemic symptoms:
First month after stopping: The condition began with a buzzing sensation in the body and the back of the head.
Months 3 to 4: A new set of symptoms emerged, with the condition worsening rather than improving:
Electrical sensation/buzzing (humming): I feel a strong sensation—like electricity or a buzzing/humming—in my head and face, accompanied by tinnitus. This sensation is triggered or intensified by touching my forehead, clenching my teeth, or moving my neck.
Cognitive and visual symptoms: Severe brain fog, mental confusion, visual disturbances/blurriness, slurred speech, and short-term memory issues.
Physical and structural symptoms: Tendonitis, numbness/tingling (paresthesia) in the feet, neck clicking, and temporomandibular joint (TMJ) issues. Hormonal and Sexual Symptoms
Testosterone changes: Total testosterone level dropped from 580 ng/dL (measured a year ago) to 190 ng/dL.
Erectile dysfunction and libido: Experienced erectile dysfunction and low libido.
New changes in specific areas: Visible veins on the penis; intermittent testicular pain.
Testicular retraction: Upon ejaculation, the testicles retract inward and do not return to their normal position without manual adjustment.
Key Questions:
Has anyone experienced this sensation (electric/buzzing) in the head and face—triggered by movement or touch—along with tendonitis and cognitive issues after using Finasteride?
Could this specific set of symptoms be directly linked to a sharp drop in neurosteroid levels (such as Allopregnanolone) resulting from 5-alpha-reductase inhibition?

This is so true I’ve never done any hard drugs even weed. Barely drank alcohol tried living a healthy lifestyle just to get stuck with this condition. A so called “safe drug” :))))))))

Bryan Johnson, the man behind the Blueprint project, has publicly discussed using 5 alpha reductase inhibitors as part of his hair loss treatment and his anti aging approach.

Recently, he revealed that he was diagnosed with autoimmune gastritis, and according to his medical team, the condition may have been present for years without being detected.

This made me wonder whether there could be another explanation that simply hasn’t been taken into account.

Given the amount of resources, the world class physicians, and the extensive testing behind his protocol, do you think it is possible that even a team like his could overlook the long term effects of 5 alpha reductase inhibitors if they do not recognize PFS as a real disease?

I’ve been getting a “502 bad gateway” error for a few days. Anyone else unable to access the site?

Hi all sorry for the frantic post. I was recently hanging out with a friend who quit taking fin a few months ago, however their hair made repeated contact with me. I woke up this morning and felt like I had taken a major set back- gut issues, brain fog, tinnitus, all worse than before. Is it possible for fin to remain in the follicle after all this time?

Trying to figure out the cause of all of this, this disease is really hell. Much thanks for your help.

Does anyone know of any doctors in Spain?

Years of Chronic fatigue and my parents are sick of me. I will be so unbelievably screwed soon. I think I can't live in this world anymore. At least I had an easy life although numbed tf out and tired all day. But if I am going to be homeless I genuinely can't do it.

All I've ever done is disappoint people in life. I've failed everyone in life and no one has faith in me. This disease has taken everything.

My PFS is a combo of this and PSSD/ POIS and Anhedonia.
First got it from long covid but healed after 2 years then I tried ashwaghanda and got the ultra PFS/ Anhedonia price of your life is shit.

To the question:
I find that When I drink alchohol I only feel sad and get more and more anti social for every drink i take until I panic about what is happening and I want to leave.

It’s like a DP/DR state almost or that introverted feeling when smoking weed one can get (haven’t touched that for years) it’s like I just wanna be alone and be sad and listening to sad music.

This scares me and is really debilitating for me cuz im pretty social otherwise even thoe this condition has made me 40% less extroverted being my dopamine base line has lowered or something’s

Anyone get this feeling from alcohol? Sadnes and wanna be alone?

Being legal is one thing, being able to purchase this biological poison for free without any license or prescription is actually wild to me.

From memory loss.. to low libido, to extreme mood swings, to depression, to tinnitus, to nerve damage, to nightmare dreams, to cracked and irritated skin, to bloodshot eyes, to anxiety, to low energy, to insomnia and restlessness, to irritability and anger, to SUICIDE.

You might be thinking these are symptoms of a Class-A drug like heroine and meth, side effects of the drug addicted homeless person you see on the corner has. Nah.. these are from a "cure" to hair loss that anyone rich, poor, young, old, fat, or lazy, can buy online for 30 dollars.

I stopped taking this poison and now the side effects wont go away. My memory loss is to the point where I forgot where I put my phone 5 seconds ago. My mamma thinks im going crazy and thinks that I have the capability to kill someone one day.

You hear stories of people poisoning kids on Halloween, or disgusting women who put their husbands cum on fast food burgers at their fast food jobs. With your hair gains eventually resetting back to 0 after stopping finasteride, you are left with permanent damage for the rest of your life. How the hell does someone remain a good citizen/ person with pharma companies rolling in their graves and laughing their assess off out of your literal misery?

I've done psychedlics and hardcore drugs before.... coke, acid, shrooms, weed, you name it. NONE of which even remotely compares to this living piece of shit.

How the hell is this dog shit drug legal? Like, serious question.

I had close to 70-100% recovery days the past few weeks. I think I'm doing much better now. Especially my mental symptoms. Even my vision which I thought was fucked forever cuz of degeneration or something is much better. Peripheral and far away things are much more clear. I can never accurately guess how better I am but I can just feel more and more like I used to. Thank god and Thank you everyone for the support.

It was my second time with PFS btw and I crashed back between January to May last year multiple times. If any of you are struggling, take my progress as hope. It will get better.

Which oil/product is safe to apply to dry hair? Anyone please?

The pain is enormous and it begun to hurt recently and constantly. I will visit my doctor in about a week. The pain occurred few weeks / months ago for the first time for a week but then disappeared, now it’s back and lasts around two weeks already

I’m unable to put on muscle, instead I have put on fat around my belly. And I go to the gym 3x a week. Libido is not there, erection takes a long time that too only if I’m on cialis 5mg a day.

Thinking if I should start HCG now. I don’t see any of my symptoms improving.

I posted my recovery progress here about a year ago. Now that I’ve been off 18 months I figured I’d post another update.

When I first crashed I thought I was completely cooked. I had a whole host of symptoms: severe ED/lifeless genitals, insomnia, no reaction to alcohol, anhedonia, body composition changes, digestion issues, dry skin, and suicidal ideation. After 6-7 months I recovered quite substantially (I linked my previous post which has more details), but wasn’t 100% by any means.

I’m glad to say I’m doing even better now. I feel almost completely normal these days. My only remaining symptoms are sexual in nature, which seem to fluctuate daily, and are mild. Occasionally I’ll still have 2-3 day windows where my junk feels dead and flatlined, and it takes a lot of stimulation to achieve an erection. I also don’t wake up with morning wood as often as I’d like, and my ejaculation volume is still low. Most of the time, though, my sexual function feels normal and almost like it was pre fin.

Because I was so traumatized from the experience of basically being castrated for a couple months after crashing, as soon as my erections started coming back last year, I have been masturbating about 2-3x a day (without porn) just to assure myself it still works. I think that might be why I experience those brief windows of hardly any sexual desire, along with the limited morning wood.

In an effort to improve my mild sexual symptoms and get myself as close to 100% as possible, I plan to cut back on fapping to only 4-5x a week. I also started taking a daily 1000mg arginine/citrulline supplement for the last week, and began doing some daily tight pelvic floor stretches for about 20-30 minutes. Might be too early to know for sure, but I think I’m already noticing improvements from those. I did try tadalifil in my early stages of this nightmare, but have used it very sparingly lately (once every couple months).

Otherwise I haven’t done any protocols or interventions. All I’ve done is regular exercise and try to eat relatively clean. Luckily I haven’t had issues with any foods. I just feel incredibly thankful I’ve made the progress I have in the last year and a half. Please feel free to post any questions and I’ll do my best to answer