If it is not epigenetic, which it has not been proven to be so and from the looks it may never be proven?? Only one other thing it could be…Autoimmune. Certainly because of testosterone nut functioning correctly but why? It appears that the body is just unable to readapt back to it for some reason…
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No, man. You misunderstood. Melcangi and Santi consider both an epigenetic change and a reduction of neurosteroids, but that does not concern the AR receptor. This they said.
I insist that the problem lies in penile tissue changes. The lack of libido comes in part because the body gets frustrated when blood is not flowing normally, nerves are not transmitting information as in the past, etc (whereas in the past, there were nice sensations instead).
We need to push for more detailed studies of penile tissues (not just corpora cavernosa, but also tunica albuginea). Eco-doppler can test some of those changes, but not all.
If many in the group have venous leak even after injection, it’s because the tissues have changed, it’s obvious.
Epigenetics, neurological changes, etc., can be a possibility, but I cannot understand why there is no serious research about penile tissue changes as the core of PFS.
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PFS sufferers have been shown to have very low levels of neurosteroids in their brain. This will certainly have a strong effect on mood, libido, etc. Why fixate exclusively on the penis?
It’s a problem of cause-effect.
Low levels of neurosteroids can be also found in depression and in post-traumatic stress disorders (PTSD).
How will you avoid depresion or PTSD if you see that your penis is unable to have a normal erection, you cannot masturbate as in the past, etc.?
I still don’t understand why the histological side (changes in the penile tissue) is still underestimated as the cause of the problem.
Because it isn’t an issue for some PFS guys who still suffer from a host of other effects like brain fog. Therefore it can’t possibly be the root cause of the condition.
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I also had brain fog for a couple of years (I was not even able to tell what I had for dinner the day before…). I am much better now. But the physical problem remains.
In any case, nobody knows exactly what is happening on the physical level either, and no matter how much I insist to urologist and even to people in this forum, nobody seems to care about this issue, and I think they are overlooking something important here.
Totally agree, especially for me everything startet with ed then shrinkage and somehow later the anxiety/depressive issues. I can tolerate anything but the damage of my sexual organs. I don’t understand why there is only little research in that issue. I can’t think about injecting me stuff into my penis or take ed pills above 37,5mg of sildenafil otherwise I get heart palpitations but there is only little effect in that dosage. One time I had to go to the Emergency Room because I took 50mg of sildenafil I thought I had an heart attack. I don’t want to die at least not yet and especially not because of ED pills.
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Did you try low dose Tadalafil? (5mg, at least 6 months).
Even if you don’t have erections, Tadalafil is working to improve blood flow.
Also, did you try vacuum device? After 3 months of daily (proper) use, it can help rehabilitation.
Not yet but I will (tadalafil). But I doubt that I will get the results I’m expecting, I also have tinnitus because of Sildenafil. But it is tolerable.
Why you want getting mechanical erections with drugs?
…Because that is the only way some of us can get erections. It’s not something anyone prefers.
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why would there be serious penile tissue research? I have PFS and almost no penile issues
That’s what I thought in the first 1 or 2 years (everything looked normal, although the erection process was impaired).
Then after 2 years it became apparent that there was something wrong in the tissues. My flaccid penis has an hourglass shape, as if the blood didn’t flow normally from proximal part to distal part. It looks like peyronie but it is not exactly that (because peyronie should appear in erect penis, not in flaccid penis)
my erection process isnt impaired
my dick looks the same as before.
ive had this for like 5 years now. only mental symptoms, like plenty of others.
PFS has to do with dna methylation not just penis tissues only
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my erection process isnt impaired
my dick looks the same as before.
Then you can consider yourself very lucky
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if i had a chance to trade my dick for my brain, id do it in a heartbeat, so i dont know about lucky
the point is, this isnt a penis only issue at the root
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Why did you use finasteride to artificially keep your hair? 
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Oh, be careful what you wish for.
An interesting thing to note is upon further delving into the study, it seems like the control group had never taken Finasteride. Perhaps permanent upregulation of AR is just a function of taking a 5-ar inhibitor and isn’t necessarily indicative of PFS per se. By that I mean Finasteride users how stopped taking the drug but didn’t suffer from PFS may also exhibit upregulation of AR.
In fact I’ve read studies that purport that AR upregulation is part and parcel of androgen deprivation therapy - much of the research has focussed on the prostates and prostate cancer, naturally. For instance:
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