As @Jaime says, you’re obviously a smart guy, congratulations on your results in incredibly difficult circumstances. Now, you have to keep on holding on and keep on being the best version of you that you can be. You’re already doing so well, just keep going.
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I am collaborating with a close friend who suffers erectile dysfunction from SSRI use a few years ago. He happens to be pretty good at making and editing videos. We will be working on a Youtube video soon with an interview-style format, where he asks questions about my experience with PFS, and he will make available all the most current research articles. I will notify you guys once we finish it and upload it, as I hope you will share it with anyone you can.
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Any update?
I feel like we should launch a youtube campaign, and launch comment attacks on marketing campaigns on facebook for these drugs. I’m 22 and my life was completely ruined at 21.I fucked 3 girls before november (when i took the finasteride) last year, none since. Ejaculation provides no sensation, and when i see girls I no longer feel any attraction or anything in my penis. I have gained 20 pounds on my stomach only, and still fit into the same pants size. But we all have these problems. It’s kind of insane that they are marketing drugs to young people on facebook that completely fuck with androgens, and even the fda admits that they do not know the full extent of how the drug affects the body long term. Only that it is safe in a one year study and can save lives of people with prostate issues. And yet they market androgen destroying drugs as safe for young men. The selfish part of me wants to let the world burn and hopefully build enough people affected to do something about it, but the smart part of me knows that once I’ve been in this state long enough my penis is probably permanently fucked, and we should just save others, and try and let young people know that they are fucking with their main androgen conversion mechanisms
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It might be of comfort to know that people have reported windows where their symptoms have entirely subsided and that in those times everything reverts to being as it was before.
While I personally am making slow progress, I have experienced things which I thought I might not make it back from.
We also see that some people suffer after very short exposure to these drugs. If they can cause such quick onset in some, it’s also worth noting that conceivably “flicking the switch” back the other way could well result in a very quick resolution too.
Don’t lose hope.
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Please get involved @cman
Just want to say on this note - thank you for being such an asset @dknighten. @Jaime has filled me in on your liaising for the YouTube project and, alongside the projects we are working on that are steadily moving, I really believe this is going to help us take this to the next level. People asked recently “why are the vaping harms getting huge attention when we are not?”. There’s a reason, and it’s not solely that this disease is startling and implausible - although this is a big factor. It’s also because you look at the news story for that and immediately the girl involved began an online campaign. I know the situation this puts people in is not something people want to shout about, but those severely affected in a position to do so doing so shouting about it through our project above has the potential to really help shift gears from a situation where patients isolate themselves to a patient community while a handful of professors plow their own fields often without adequate consideration of what is actually happening to people. Something my late friend Matt proved with his imgur album illustrating what happened to his skin over the course of PFS proved is that we can get attention by humanising the problem. Showing this is happening to real people, and just what the extent can be - and how little it takes in some of the most unfortunate. This was only pictures on Imgur and got in excess of 150000 views.
Once our projects come to fruition, we are planning thoroughly to shift strategy to outreach to build on the intense work we’ve done and many have contributed to (thank you survey takers!). We will do all we can to build networks with scientists we have identified and offer clear and new funding opportunities to move things faster. I believe we can and we will - and I believe those volunteering to share their stories, and what is possible following these endocrine disruptive therapeutics on a human level, is going to be a huge help to us all. @Jaime is doing a good job coordinating a new socials strategy. So thanks to him, @Dknighten, and everyone else bravely volunteering.
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@axolotl I’ll do the best I can at making the video look good & explaining my experience. Anything to help get a viable treatment for this condition…
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Guys, I didn’t want to make another topic, but these skin and muscle changes are the absolute worst. They are so bad that If I had them fixed, I would live completely happy with cognitive impairment, ahedonia, and brain fog. I have this rubbery, puffy, pale fat around my thighs like a woman. I’ve always had thin, lean legs, and now they seriously look like a chubby guy’s. All of my skin is just dead and gray. I plan to touch on this in the video I make; I’ll be wearing shorts & a T-shirt and explain everything the best I can…
Also, ever since I had my secondary crash in June, all the muscle in my legs and ass is just gone. It’s uncomfortable to sit down because I just feel my Ischial tuberosities (the bottom-back of your pelvis) pushing into the chair, like the muscle in my body doesn’t support or activate the same way. When I do body-weight exercises, the muscles are insanely weak and I just feel the pressure on the joints if that makes sense. Like the muscles have been fundamentally changed, switched off.
Figured I’d post an update, I’ve been doing well to spend considerably less time on the forums. As I progress with this, I realize there really is no in-between. I’m not able to browse these forums and obsess over protocols, herbs, etc and still function & live my life. I’ve come very close (and continue to do so) to letting this condition strip me of my career and future. Can’t let that happen. Anyways:
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Having a Youtube video come out soon. In the final stages of being edited. I hope you will watch & share it. Most importantly, I hope you will all make your own so that we can spread awareness. Hard to receive support for a condition that very few people know exists…
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Overhauled my diet substantially, basically following a mainly Paleo diet with carb backloading in the evenings. This helps me, as I’ve thrown out a lot of inflammatory foods and it actually adds some sort of structure into an otherwise chaotic situation. I’ve done well to limit the amount of times I eat a day, and I’ve bought grass-fed beef sticks & 2-ingredient non-GMO fruit bars for snacks. Also have added in some goat kefir with frozen berries in the evenings.
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implemented weight training about 2-3 days a week and sprints 1-2 days a week. I still have a bad disconnect between my muscles, and my body definitely doesn’t build & respond the same. I get really sick feeling and disoriented after training. I typically will throw up at least once after the sprints. I get out of breath easily and have this weird, hollow feeling in my lungs. it’s a feeling like I’m sucking air through a straw, like my lung capacity is diminished.
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limiting masturbation and stopped dipping. Was pretty addicted to jerking it before all of this, and only now do I see how harmful it is for your body to be masturbating regularly. It taxes many systems unnaturally. Dipped every day for almost 8 years and always have thought about quitting but been too weak. I have a reason now. It’s been about 2 months since I’ve quit.
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getting a gum graft soon. Since PFS, gum recession has accelerated around the front bottom of my gums to the point where the root is almost exposed on one of my teeth. I’ve always had the gradual recession, but in the past 6 months it has sped up a lot and is actually hurting now. Very strange.
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skin seems to be thinner all over, in addition to the rubbery, stretchy, etc. When I crashed over the summer, my skin was very pale and opaque, with all the vascularity gone from my skin. Since then, my body has vascularized the tissue and I believe at some times, I’m actually more veiny than before. I see veins where before there weren’t any. Very strange.
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Fighting OCD and compulsive thoughts. I had this issue before PFS, but now it is probably 10 times worse. I fight minute-by-minute to stay present and eliminate intrusive, compulsive thoughts from my head. Financial pressures, school pressures, PFS, what’s gonna happen to my body? Am I ever gonna get rid of the brain fog? Going back and forth from my book to my computer to my phone. Very difficult to keep focus for more than 5 minutes. Something I’m actively working on. Probably my worst issue at this time, the focus and overall mental clarity.
I’ve been slowly and obsessively getting a plan together. I believe once I have a structured plan, I can hopefully put it out of sight, out of mind, and move on with my life. October 23rd will make a full year I’ve been into this, and I don’t plan to keep spinning my wheels for another year. I believe it will take an incredible amount of dedication and patience, but I believe I will recover from this and I will be an all-around better man for it.
A brief side note: I am more thankful than ever to have gone into the field of Physical Therapy. At our department, the students get hands-on experience with pro-bono patients and it has been very eye-opening. To be in the presence of someone with an actual, concrete disability (being mentally handicapped, wheelchair bound, etc) really helps snap me out of my own head. We truly are our worst enemy with this. The brain is incredibly powerful. So powerful that you can take a perfectly healthy & happy man, and negatively affect his penis integrity & libido, and it can drive him to contemplate killing himself. Very interesting food for thought. Perspective is important.
I hope many of you guys will make a video and do what you can to spread awareness. Let’s keep moving forward together.
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@Dknighten You’re an inspiration, man. No matter how often you log in , we’re here for you to support you or whatever you may need. Good luck with you PT doctorate, man. Go crush it out there.
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Thank you man. As always, much respect and gratitude towards you and the whole team here.
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October 23rd. Exactly 1 year since that holy day of swallowing 1mg of Finasteride lol. Man if you would’ve caught me and warned me about what all would happen in a 12-month period from that point, I honestly might have taken it anyway because there’s no fucking way I would have believed it… I hope in another year’s time I am much better off and have conquered at least some of this mess…
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No changes really in overall condition. Body fat is still low, I’m 5’8 and weigh about 137 lbs right now. Trying to watch what I eat and exercise often. I’m really struggling mentally. My OCD and racing thoughts are at an all time high. I have slight delusions and paranoia, where i’ll believe things which I logically know are probably not true (classmates talking about me, believing i’m making people uncomfortable and want me to leave, etc). When I get a thought inside my brain, it’s like I can’t shake it. It’s like I become trapped inside of my mind and 10-15 minutes later I’m in a constant, spinning whirlwind of misery that I’m creating inside of my mind. I have gotten 13 months through this without any medications besides Clomid, but I am seeking a psychiatrist and planning to start on a low-dose anxiety or depression medication. It’s becoming debilitating.
I hope everyone is doing well. Let’s continue to move forward together. We have bright days ahead of us, I have no doubt about this.
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Man be careful with anxiety and depression meds. Did you end up starting clomid after all?
Yes. Took 25mg every other day for about a month and a half. Seemed to worsen my brain fog and anxiety at first, then no real difference.
I’ve also started occasionally having these sort of seizures, where my vision will get wavy and I’ll get really bad light intolerance, head pressure, headaches, and nausea. I have to turn off the lights and lay down. I’ve never had these types of issues before, but my brother has had problems with seizures for a few years now. I think between the mental issues worsening and these seizures, the drug triggered some things I already had encoded in my genes. It’s very strange man.
This sounds like a migraine with an ocular aura.
Yes man, exactly. Never got them until relatively recently. Before PFS, I would sometimes get sudden throbs and pressure inside my head, especially if I exerted myself. I fully believe that we have all these crazy things already encoded in our genes, but the drug helps trigger them. Because before PFS I would have the OCD, the anxiety, the compulsive thoughts, but I was able to tame them. Now, it is the same things but about 10x worse.
I want to touch on my physical changes quickly… I have described very crazy changes to my body (feminization, fluid gain, wrinkly, stretchy, etc), but as time moves along, I realize that my skin has softened, lost pliability, and it has thinned. It’s not so much fluid gain as it is a shift in fat deposits, and thin, stretchy skin. I can see the veins around my upper chest and shoulders, and in other areas that I never could before PFS. Granted, I have lost a lot of subcutaneous fat (hormone changes and I eat less). However, my fat deposits are in my low back and around my thighs, I suspect that my body is able to store fat much more easily now. That’s why I’ve been careful with my eating.
Haven’t posted on my own story in quite a while, wanted to provide an update for anyone who cares to read:
The moderators are currently editing the Youtube video I posted a while back. I hope it will be up soon and start to accumulate some views and comments.
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I’m lifting weights again and though it feels great, it’s definitely different. Very difficult to see progress, not even sure if I’ve made any. However, my neural adaptation is still in tact. 20 lb dumbbells were incredibly heavy for me back in June, and now they aren’t nearly as heavy. If you’re getting back into exercising. Start with BODY WEIGHT exercises and stretches. Work for personal records at pull-ups (or chin-ups) push-ups, body weight squats, and weird shit like sidelying hip abduction and standing calf raises. Do this for a solid month or two before trying the weights. Try to stay consistent on stretching and foam rolling. Makes a difference.
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If any of you guys have been panic-stricken, walking balls of shit throughout this mess (like me), download the ThinkDirty App for hygiene products.
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Cracked down on my diet and focusing on less calories, more nutrients. Steamed vegetables like brussel sprouts & broccoli, lean beef, onions & peppers, and some eggs, trying to limit carbs like gluten-free or vegetable pasta, potatoes, and nut butters & honey.
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Double filtering my water (brita filter on the faucet and a PUR filter pitcher). Drinking out of stainless steel, glass, and ceramic
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storing food in glass pyrex containers, no plastic
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going for walks shirtless in the sun when it’s out. The area I live in for school kinda sucks and it’s always overcast and raining.
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getting back into boxing. I did this for a while during my first 2 years of college, and there is a boxing club here at the school. I’ve been going about once a week. Feels good to get another form of exercise.
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Still trying to break my cycle of isolation. My anxiety and OCD/racing thoughts are the absolute worst, very hard to look people in the eye and maintain a normal conversation and facial expressions when it feels like World War III is going on inside my brain at all times. But I have some very good people around me here.
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Trying to stop dipping tobacco. This is proving tough, as I’ve had the habit since about 6th grade. Trying to atleast limit it to once or twice a day.
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limiting intake of alcohol. When I go watch a football game or hang with some classmates, 2 beers is the limit. I don’t go past 2 beers.
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If you’re a coffee drinker, make sure you’re making it at home via a French Press or other natural method. No creamers or sugars added. Try to find a good, low-acidic dark roast coffee. Shit is great for you if you keep it under about 20 oz a day.
I’ve stopped chasing doctor’s visits and bloodwork. I’ve accumulated lots of doctors bills and debt, on top of my already-problematic credit card debt. I’ve really come to realize that we are all playing the long game here. The improvements we are going to see aren’t really going to be trackable at the time. They are very gradual, and to see them you have to get on with your life. I am truly blessed for going into Physical Therapy, because it reminds me that there are people out there with some real bad shit, like being stuck in a wheelchair, or having Multiple Sclerosis, etc. I think perspective is huge. The more I get out of my own head (and my own way), the better I feel.
I’m going to recover. It is truly tough to believe that with every ounce of my being, because things are still so shitty, but I have an intuitive feeling that things are going to be alright after a period of time. I believe it might take a few years, but I’m gonna be alright. I believe most of us will. We just have to keep pushing through it, one day at a time. At first, every single day is shit. There are no positive moments, no spurts of energy. No light. But it will come, you just have to be the one that lets it in. It is our responsibility to build ourselves back. Over time, we will have a day here and there that really wasn’t so shitty. Then we have a few days. Then we start stringing them together. It just takes a change in momentum.
Let’s keep smashing this shit.
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Something else that I thought was really cool to add. Closer to my graduation and licensure date (May 2022), I will be contacting the PFS foundation about getting on their directory as a licensed healthcare provider that acknowledges PFS. I will have substantial knowledge and treatment methods to hopefully help current and future sufferers of PFS with the musculoskeletal issues, and I might even get to meet some of you guys in person, depending where I practice… Let’s get it.
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