Joining you at this strange frontier

Very 8nteresting…Hopd more light is shed in the Baylor study and people can get proper help instead if killing themselves with bro science…

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Wow, what a heartbreaking account to hear. Experiences like this really make me want to do something more. The irony of it all is I asked my sister who is a Pharmacist that graduated from University of Southern CA (prestigious Pharm D school) and she told me not to worry about PFS after I came to her scared shitless about what might happen to me in a couple weeks. She directed me to article from NCBI which stated nothing even remotely close to the symptoms (more like permanent side effects) of those on this site. Not sure if she was trying to reassure me, but I can’t help but draw generalizations of how rigged the entire system is. Nobody should have to go through what you’re going through and I can’t help but wonder if you’re making any progress?

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Thank you Pete, it’s kind of you to say, and I agree; this isn’t an experience I knew was possible and no one deserves it. Do bear in mind my case is atypically severe within PFS. By the time I crashed I had no clue what PFS entailed (I thought by taking it I had a slight risk of erectile dysfunction after prolonged use), so my personal thought when I see people worrying ahead of time about what might happen is that it’s a good sign for said person. My experience was like having my soul sucked out and acid poured into my brain, and very quickly. Physical deterioration onset in the following months, along with ongoing severe pain, which coincided with a near doubling of my testosterone to 23 and two thirds drop in my LH to 1.3, which doesn’t make sense in a conventional interpretation. I am definitely a “horror story”, so I think it’s important I point out I’m on the unusual end of PFS. I often feel hesitant to post the extent of what I go through because I know it upsets milder cases to see, but I feel I should as this is squarely what finasteride has done to me so is important to record. What I think is interesting about my case is that I had aforementioned significant digestive symptoms for many years that were extensively investigated by two of the best professors in the country. I had not one single issue mentally or sexually until I took finasteride again, so I have experience of being a very mild case and now at the extreme end of severity.

To answer your question: Well, I’ve experienced progress in some areas and deterioration in others but in terms of overall quality of life, very little. When I was crashed, which lasted for months, I was indescribably derealised. I didn’t know who or where I was and suffered constant extreme anxiety. The anxiety has improved greatly though I still experience panic attacks. One of my most threatening symptoms is my autonomic breathing dropping out and that unfortunately still happens, but for shorter durations. My sleep has improved to about 3 hours a night (from zero) but more sleep actually tends to make me worse so I’m not too focused on that. I am now able to pass for normal in short conversations sometimes, like at shops. I could barely navigate the house at first. When I crashed I had bad pain in my teeth that has lessened. I also have burning sensations in my brain stem and the back of my head far less often now. I can go for walks, and I have my ability to process information back, albeit very slowed. I am sometimes able to performatively play certain videogames but sadly I don’t enjoy them as i did. I have a very severe and unwavering anhedonia so I’ve lost my interests. I cannot read fiction anymore, but I can at least listen to music at some points now, which I could not for a very long time. Sexually, I have no libido. I’ve suffered tissue loss in personal areas and experience constant severe pain, so I don’t even know if i have numbness. If i do orgasm I experience symptomatic worsening. I have increased hair loss and my skin is very dry a lot of the time. Initially I tried hundreds of pounds of supplements and random ideas I’d seen around with either worsening or nothing as a result. I continue to make dietary changes but nothing has made a substantial difference to me. I had over the years tried a vast amount when I had solely digestive symptoms under the direction of many dietitians, and they never did then either.

My general condition isn’t very stable, varying between bad and inoperable with brain fog and fatigue, at which point i just have to lay down and stare at a wall. I still don’t really perceive time right - it’s all been one long day. My memories of my life are extremely limited. I don’t have access to feelings of care for my family or friends, and I haven’t been able to maintain my many previous friendships due to that combined with all my other symptoms. I don’t feel like the same person. I was motivated and passionate, and now I’m empty. A few of my close friends were understanding and they have stuck with me; one is very supportive and informed regarding PFS and that has been very helpful. I did lose the love of my life and partner of ten years. All I’d want is to see her again with my own eyes and be there for her. Though if I was cured tomorrow I’d probably like to have some wine, too.

However, I do feel I have made progress in other ways. I have always been quite intellectually capable and I have access to the resources of a very prestigious university, so I have spent the past year (since my cognition improved enough) educating myself in biological science and epigenetics. In addition I completed courses on neurotransmission, genomics, and pharmacology online. I also felt strongly that there was much to be done for the issue at the community level. I put hundreds of hours into rebuilding this site with @awor who I am deeply grateful to. I am very pleased to see the community revitalised, and in the main being supportive and treating each other with kindness despite their varying conditions and problems following use of these anti-androgenic substances. Currently I am involved behind the scenes with many projects towards the scientific advancement of our novel condition and work hard to do everything I can while I can to help. So while I do not have a quality of life to speak of, I do feel I have a purpose.

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Man, bad things happen to good people, and @axolotl you’re a prime example. Great post and thank you and @awor and many other dedicated folks for putting the rest of us on your backs. I hope you know that although this issue hasn’t been solved, this community has saved many lives. Thanks for keeping it alive.

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Wow I can’t even fathom 95% of what I just read. It enrages me that this is happening to people like yourself who are quite obviously well educated and had a good life prior to consuming this shit poison. It gives me solace knowing that you have come to find purpose in this life, but I understand that it must feel like an eternal hell longing to get your old life back. I just want you to know that you have already made a difference in my own recovery and I appreciate what you do for this community. This disease will only be solved at the biogenetic level and it doesn’t really seem like the outside world is going to help make that happen, people like you and “tryingnottoworry” will be instrumental in that research. Thank you again, and again. Even if I am not yet suffering with PFS, I am a male and I can sympathize with all of the males on this site having consumed this shit, and I am here for the cause. People keep telling me to stop worrying and get off the forums “you’re gonna drive yourself crazy”, but honestly I am thankful to have people like you here to truly educate those like me who had no idea of the after effects of finasteride. Additionally, I would like to be able to foresee and identify any PFS symptoms right when they come (if they come) so thats why your posts really help newcomers like me out.

I just want to say, get ready for an influx of new members in this community. With all of the online marketing of websites like Keeps and Hims on social media, they brad finasteride to look like a vitamin at worse, like candy at best. This is how I bought into the medication, and I wish I had done my research. I would have never taken that first pill, just like everyone else on here. I feel like a great place to start for anyone looking to make change is to take these fuckers down and not allow them to advertise on social platforms.

Thanks again acolotl

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I’ve been here for around six years and have read pretty much the whole forum back to front several times. Your crash really is the worst I have come across, axolotl. What this drug can do really never ceases to amaze me.

I am glad you have found a new purpose getting involved in this community and playing a huge part. With Awor’s return and your combined efforts the community is striving again. This forum has come back to life, the crossover with other patient groups is promising, new projects are on the way and overall there seems to be a good spirit. This has been absent for quite some time. You can be proud of yourself. Without you this community would continue to go down the abyss. Thank you!

Now it’s on all of us to keep the ball rolling! We will not stop before we get our lifes back!

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Thank you, that means a lot. It is completely astonishing, and to be honest it never truly sinks in. I am sure there is something hugely significant to wider medical understanding at the crux of this novel problem, and I do believe we can achieve great things together.

Thanks for your optimism and support guys.

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I only took it once and all my symptoms are mild. I was so tempted to try it again just to see if I could get better because a lot of my problems like digestive issues didn’t occur until months after I quit but the uncertainty of taking it again is the scariest part.

You have all my symptoms, we are really the worst. Have you got any improvement of some symptoms or are they still all present?

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what the hell. i havent read your story before axolotl. your symptoms are very similar to mine (except the physical symptoms that i dont have fortunately) .especially the consistent prostata pain and cognitive impairment. i enjoy music like before but cant read/enjoy books or films anymore. and the most other rewarding things. you are definitely a harder case than me but your description gives me the hope that these symptoms all have the same root and its not just coincidence that all this happened to me 2 weeks after stopping (with a bit tapering before). thank you for your great work here. hope we will all get our lifes back !

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It’s interesting that both @axolotl and @Milando97 mention music as the only exception to the soul-crushing anhedonia. That’s also been the case for me. While greatly diminished, my enjoyment of music is one of the only pleasures PFS has allowed me to experience.

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How’s axo now? What can we do for him

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Taking a few weeks off to recover after all the work that went into planning and fundraising for the studies.

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Dear Baitong,

Thank you for your concern. I suppose I should update my personal account, however not much has changed for me.

As I’ve said before, if you are a mild/moderately affected patient who gets upset by what you read, please understand I am very severely affected and perhaps don’t read on/skip to the end if you feel you may frame my experience in terms of how it makes you feel about your undoubtedly significantly different situation. I met a journalist recently who was speaking with many patients and family members. They accurately described my case as a “minority within a minority”.

To borrow from what @Dknighten said of himself on our YouTube channel, finasteride has affected every fibre of my being. As I’ve explained in this thread, for many years I had only limited physical problems as a “mild case” of PFS, without knowing the cause of my health problems, and my life remained very happy. I did not have cognitive or sexual problems. If I had known, or had some warning of the potential for persistent physical side effects, I would not have taken the drug again five years ago. Nearly five years after this brief mistake, my life is unrecognisable due to it. Nothing about my health or my life resembles the day before taking this drug, and every moment is a struggle.

As I’ve mentioned before, I had some cognitive improvements by the time thing’s settled down about one year after my crash, allowing me to pursue the efforts I’ve undertaken since. However, the majority of my symptoms - that all hit me like a train during my crash -are still present and debilitating. I have countless physical issues well reported here, including dry skin, dry eyes, bone and teeth pain, muscle atrophy, prominent veins, semen changes, frequent urination, a burning sensation in the back of my head/top of my neck, a tremor in my jaw, issues with my vision, issues with automatic breathing just “dropping out”, as well as strange heart arrhythmias. These last two come and go and thankfully I am not dealing with them at the moment as they feel very threatening.

I have essentially no ability to pursue a new romantic relationship due to the general state of my health, and more specifically pathetic sexual function, chronic burning genital/prostate/perineal pain and significant loss of tissue that occurred over the first months of my crash. The erosion of someone’s sexual organs and removal of sexuality from a prescription drug takes away a fundamental part of life and identity. Incredibly, this body horror is one of the lesser problems resulting from this disease. The anxiety, anhedonia, derealisation and many other neurological symptoms I experience are relentless. I will not reductively go along with calling any of this “depression” - the depression I experience is situational as a result of these symptoms and the joys they have stripped away.

I must always stress I had never experienced cognitive problems, insomnia, panic, anhedonia, or any manner of sexual dysfunction (nor dissatisfaction) whatsoever before taking finasteride. I would not have been able to imagine what I have experienced and am experiencing. I did not know what “PFS” entailed, and the leaflet with the product I received contained a handful of symptoms at best. There was not a single cognitive symptom mentioned. Certainly, there was no mention of progressive, irregular atrophic damage to one’s genitals, and chronic agony, after withdrawal. I was unaware of finasteride’s potential to affect the brain at all, and I would have never risked this incomprehensible outcome. By the time I knew what “PFS” was, I was already experiencing the extreme end of what is possible in this astonishing disease.

I sleep about 3 bad hours a night, nearly always with night sweats and tachycardia. I would still feel very concerned if I were to attempt to drive, due to the cognitive problems. My memory is extremely impaired. I cannot feel rewarding feelings. I have to force myself to engage with any hobbies I am able - in the short windows I can. I spend much of the day managing my anxiety in any ways I can. I cannot say I have any meaningful quality of life. I feel I have only endured this long due to both the support I’ve had and a stubborn streak that won’t accept such a disgusting injustice. I hope the efforts I have made will help change things in the near term future. My life was worth far more than the one dollar value of the pill that took it away, and that caused ripple effects on the lives of so many of my loved ones.

I had immeasurable love for members of my family, and I remain distraught that feelings and aspects of who I am that I considered immutable have been taken away by a cosmetic product. I would be in constant contact with many friends before PFS, but am now largely isolated by it. It is a very difficult situation for others to empathise or cope with. I have been supported by - and have reconnected with - very kind and thoughtful people, and for their support I am always grateful.

To an external reader perhaps considering this drug: However strange this sounds, it is much more absurd for this nightmare to be the story of you. It is shocking that the profound suffering of myself and others is still so poorly acknowledged and actively obfuscated. Any potential user should give consideration as to how they would navigate such a remarkable situation, in practical terms, while suffering extreme cognitive and physical debilitation. It seems the status quo is going to remain until useful research provides mechanistic insight, so you will not be able to currently rely on clinical or institutional help. The absence of recognition or diagnosis is devastating, and is causes further damage to people harmed by this drug. This is particularly true for interpersonal relationships that are tested to breaking by the condition. Patient’s loved ones rely on medical professionals to provide context, accurate diagnosis and information. Currently, clinicians are not in a position to do this, and their ignorance is still far too often leading to gaslighting.

It’s easy to make decisions in life thinking things like this can’t happen to you, as the protagonist of your own story. It’s also easy to assume that regulators and institutions people have an untested faith in will be there to support us if something so horrific befell us. Tragically, the opposite has proven to be the case for myself and others unlucky enough to suffer persistent harm from Finasteride.

The stupidity of what is at this point institutional refusal of clear and significant adverse event reports is absolutely remarkable and dangerous. We are in a time where public health officials desperately need to inspire widespread confidence in regulatory decision making to prevent hospitalisations. With regards to finasteride, scientific literature contains significant adverse event signals in young men, a litany of examples of case controlled findings aligning with patient self reports, and increasing evidence of transgenerational epigenetic alterations in animals caused by exposure to this drug. Despite this, regulators continue to do absolutely nothing whatsoever about the sale of this drug to young men as a cosmetic product. It is not just causing “side effects”, it is permanently ruining lives. Going into 2022, I cannot overemphasise both the tragedy and idiocy of the status quo as regards this medication.

Personally, I have suffered a number of serious upsets in my personal life in the past six months. Together they amounted to more than I have been able to bear while continuing the level of personal investment I was making towards progressing this issue. I have given my all over the past four years to keep this resource available while desperately trying to make meaningful progress in terms of the acknowledgement and investigation of PFS. With the commencement of the broad molecular level assessments we are currently fundraising for, and excellent centres/experts able to interpret the results, it’s now appropriate that I focus more on trying to take care of myself so as to be available to effectively assist with the work I’m required for. The huge awareness efforts are crucial and fantastic, and I’m very grateful to the patients bravely speaking out. I am grateful to @sugarhouse and the whole team for making these efforts possible, and keeping propeciahelp available.

I’m proud of our achievements in the past year and believe there are real reasons to be hopeful for the future, if patients continue to come together and speak up regarding what precisely happened to them as a result of taking this drug. We now have an immediate opportunity for investigation that builds on the extremely important and enlightening results of the Baylor college study of PFS patient tissue. This will begin progressing us in the right direction in terms of understanding the disease mechanism, but we still need to do much more regarding awareness in the meantime. It is not enough to remain hidden in cyclical conversations in patient groupings, hoping the world will gain an accurate appreciation of what is happening to people. Many of the circular publications that seem to propagate in absence of research by a few people attached to the issue do not even acknowledge the bulk of the symptoms in this disease, nor its remarkable characteristics. This has to change, and urgently.

I’m very optimistic that those speaking out, the important coming research, and the media coverage next year will begin to turn the tide for those harmed by this substance. As ever I thank every patient for their bravery, no matter the extent of their persistent health problems, and their empathy with other patients in differing conditions. I hope you all have as restful a holiday season as you can. My love to you all.

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Thank you @axolotl for the very brave detailed update. You are an amazing, inspirational granite like human being.

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@axolotl I am sorry to hear your level of suffering has not abated over time. As a “minority within a minority” myself, your post resonates with me. Thank you for all you have done as we are now starting to see the fruits of your labor. I wish you the strength to continue on this journey as your continued contributions and expertise will be needed every step of the way.

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@axolotl Since my arrival on this forum, the amount of work that you and the guys here have put in behind-the-scenes is incredible. I can safely say that PFS would still largely be in the Iron Age if it weren’t for this. As you’ve told me many times while I was struggling severely, the most important thing you can do is to take care of yourself, right now, whatever that looks like. We have all made it this far, and my hope for over the last 3 years is that one day we can be free of this. I have personally taken some steps back from being active with the forum and the guys here solely due to focusing on finishing my graduate program. Overall, my condition with PFS has seemed to “settle” after a long time of steadily worsening. I’m hoping to just ride this momentum and see the end of my degree and become a licensed Physical Therapist. What an accomplishment that will be. On an almost weekly basis, I receive messages and comments about my video and posts from guys who are struggling.

I cannot underscore enough the importance of men (and women) here to speak out about the issue. It has a profound ripple effect and a huge impact on our cause. Every video, view, like, share, and comment, add up and have infinitely more impact than threads on this forum ever could.

We all know first-hand the severity and tragedy of PFS, but unfortunately, the rest of the world does not. And that has to change in order for something to happen. Please speak out. Get in touch with the guys here.

Take care of yourselves, whatever that looks like. One foot in front of the other until we are on the other side.

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Bless you Axo, you are a warrior in the truest sense.

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Does anyone know how Axo is doing these days? Seems it’s been a while since he’s been active. Hope he is doing ok.

Axo is ok, he’s just not involved in the day to day of the patient community anymore. He’s still involved behind the scenes with our charity.

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