I never said 100 percent (even though there are) but there are a lot of 80, 90, or 99 percent ones varying from hormone usage to other lifestyle changes. It’s really varied obviously
Whether you believe them or not is another story
All we know is that they can be very long lasting. There are stories here of people having PFS for over 20 years. I just passed the 11 year mark myself.
Yea, there are many recovery stories here. But it looks like many of them happened within the first year or two. People who say they’ve recovered after 5+ years, well… but like you said, it’s tough to say if they got back to 100%, or just recovered enough to be happy with their health. (It can be hard to remember what your health was really like after enduring 5+ years of a terrible disease).
I don’t want to make this into a “are the recoveries real” thread, but all we can say is that people have reported recoveries, but it’s all anecdotal at this point. No research has been done on this.
After 11 years, how much have you improved from 0 to 10 in every dimension?
(sexual, physical, and mental)
My story is here - M_C's story - 11 years of PFS
Biggest improvements have been anxiety and brain fog.
hey i kno wits not a recoveries thread… but did there hear of any recoveries of people that had hard flaccid from fin/dut, or total fibrosis/ ED? or is implant the only way to recover? maybe some tried stemcells, oxygen therapy, prp injections?
I don’t want to derail @KingHenryV 's thread.
But there are definitely recovery stories for ED. Trouble is, they’ve not been shown to be repeatable. After over 20 years of people trying expensive experimental treatments with no repeatable results, it’s safe to say that we need a more targeted approach. The Baylor study gave us the first clear lead on what’s happening to us - now we need to pursue it.
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Don’t worry about derailing the thread, as long as information is being exchanged, the thread is serving its purpose. I’m seeing contradictory information about the presentation of PFS – on these forums, people are saying completely different things about 2 aspects of this disease. 1} Are the genetic alterations permanent or not? and 2} Is this condition progressive or not? Do most people improve over time, while others get worse over time?
How does this condition have radically different manifestations if we have allegedly solved the root cause? Even though more information has come out about PFS, it clearly is not being relayed to everyone. And there are many more questions that still need to be answered.
Hey,
thanks for the informative thread!
However, I would strongly disagree with the statement that people commonly recover within a year after the crash. That sounds as if PFS is a disease that, for a few unlucky ones, lasts more than a year while the great majority recovers quickly. After reading the forum for 4 years, I’d say it’s the exact opposite. Especially for the sexual sides, I’d estimate the recovery number to not be higher than 5%, probably even a lot less.
I even remember a paper looking at PFS patients for 4 years and stating that it takes people longer than that to recover (because none of the patients recovered). Sorry for not being able to cite it here.
I’m just very suprised to find a statement like this on the forum. If I’d be an outsider and I’d read that PFS is over after a year for the majority of sufferers, I wouldn’t see a big need for larger efforts/investments to help people like us. And if I’d be a doctor I’d think: Yeah see, not so bad as these PFS guys were claiming all the time. Just like I thought…
I think you misunderstand.
The statement was meant to illustrate that the majority of people who experience side effects from the drugs and then quit the drug will see a resolution of their symptoms within a few weeks or months after quitting.
Regardless of what we see and read on this forum, it is still the truth that most people who use 5ari-substances do not experience side effects and that for most of them that do, the symptoms fade (weeks, months, a year) after quitting the drug. If everyone who took these substances got hit by PFS, this would be a very, very crowded place, but it’s not.
In other words, if we consider ‘persistent symptoms’ as a prerequisite for what we call “PFS”, then those patients who experience permanent resolution of their symptoms in a few weeks, or months, or one year, after quitting… might simply not be actual PFS patients to begin with, or at least, not be in need of any treatment since it will pass with time.
So the timeframe is an important thing to consider before we attach too much credence on a person’s alleged methods for recovery (such as those from OP). I think that was the point of MC’s remark.
Also the rarity of the condition is not an indication of how bad the problem is. The severity of the condition for an individual should be the indication of how bad the problem is.
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- The Baylor study found changes to gene expression (not changes to DNA). The study came out just a few months ago, so follow-up studies has not been done yet. (But we’re planning one).
- Anecdotally, all outcomes seem to be possible. Some get better, some get worse, some stay the same. This guy, for example, seems have had unchanging (mild) symptoms for 20 years.
If you’re hit with this stuff, I understand that the uncertainty and doubt can be a lot to take. You’d think that science would be advanced enough to get a handle on this after so many years. Unfortunately, there hasn’t been much help from the medical community. The most significant research into this condition has been privately funded, and it will likely continue that way.
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Thank you for the many responses. I started a new topic titled “Use it or lose it?” in General Discussion. I am curious about how abstinence may affect the function of androgen receptors. I have not lost all sexual function; should I be trying to masturbate every day if I can? Or do a mild NoFap like every few days? Or try to go weeks? What is the overall consensus on the effects of NoFap, is it just different for everyone?
Your comment does not make sense. Who are you talking to? What’s with the emojis? What is your purpose here?
His English isn’t very good. Not his first language.
I can see that, but I can sense that he was being facetious in some way. Why the hell is he using crying laughing emojis when literally no one on these forums is laughing?
Hey KingHenryV
how is your ankylosing spondylitis? Still painful or under control?
Also do you think your Enbrel still helping against PFS?
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I see a different doctor now and he said I have Psoriatic Arthritis not AS, but I don’t think it matters at the end of the day. Also I switched from Enbrel to Taltz. It has been helping me. But what has really helped me improve even more besides the medication is eating a mostly carnivore diet (90%), but I’ve been trying to get as close to 100% meat as possible. I crashed recently from using Tamanu Oil for the dark spots on my skin and didn’t realize it contained beta-sitosterol. I am already recovering quickly from it, though. Ive crashed a few times before and recovered each time. Soon enough I should be back to my baseline which is 85-90% recovered compared to my pre Saw Palmetto state. I actually decided to go to a psychologist to help manage my anxiety disorder which I tried to avoid doing for many years, but after noticing an increase in my inflammation related symptoms whenver I feel anxiety or stress, I definitely had to ameliorate that somehow. I’ll see how much CBT can help me since I’ll be damned if I go on another medication. 1 is enough for me, and eventually I might be able to do away with the Taltz if I continue to make significant improvements. I’m going to try intermittent and prolonged fasting since it has been shown to reduce inflammation and modulate the immune system, but it will be hard for me since I am hungry all the time.
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where did you see this information about the 5AR?
Hi, any update? And for how long have you been on carnivore?
how is your ankylosing spondylitis now?
when was it diagnosed, after your pfs or before it? I mean is your ankylosing spondylitis related to your fin or saw palmetto use?