I was referring to pulling up confirmation that a study was being done at Baylor. Per Philip Roberts, the findings are expected to be published later this year.
Sure thing, message me your number and we can talk on the phone tomorrow
-Complete muscle wastage,
- all of my skin has softened like a woman and is very rubbery.
-I have rubbery fat accumulation around my hips and thighs,
-I have this dead, aching feeling in my abdomen like my muscles are offline.
-My muscles have become very weak and shake often.
-The hair on my arms has thinned and lost pigmentation (turning blonde).
-Mentally, it is like I’m trapped inside a car with the windows rolled up. Everything is “off” in my perception, it just runs together.
-I have difficulty focusing, comprehending things I’m reading, and recalling information.
-I am on edge 100% of the time. I cannot just calm down and relax unless I am playing a video game or watching something on television. It is like something is switched on inside my brain and can’t be turned off.
-I’ve noticed changes to the texture of my head hair. It is more coarse and dry now. - all leg and body hair has changed and become thinner and dryer. Many of the hairs on my legs have followed suit with my arms and turned blonde
- Body odor is like cat piss and vinegar mixed
- changes to my sweating patterns. I now sweat all over when I go for a jog, before PFS I scarcely sweated.
Just wanted to provide an update. Finished the first Summer of physical therapy school with 1 B and 2 As, so I’m in good standing. I just can’t foresee me going through another 2 1/2 years of this with my body deteriorating and my mind not improving. Possibly following a recommendation to consult with Dr. Alan Jacobs out of New York for a consultation. He wrote me a script for Bioavailable T, Ultrasensitive E2, LH, and FSH. Once I get those drawn he will consult with me.
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Stay in school @Dknighten ! It saved my life and it’s giving me something to live for. Go be the best student you could be then go be the best doctor you could ever be. Make it your coping mechanism, make it the thing that fills up your time.
You’re getting good grades in the hardest circumstances. You’re a bright man. Keep going.
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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.