Current post-finasteride research is not paying enough attention to penile tissue changes

General Discussion
#1

@Scott.H @Cooper
(I am starting a new thread on this separate topic)

Current research is not paying enough attention to what is going on in terms of penile tissues.

In my case, this was the reason why the symptoms were persistent after I stopped finasteride.
Depression, insomnia and other typical sides came as a consequence (I started to see fewer people, to stress a lot, to worry about the future, libido became very low, I was seeing attractive women and I didn’t understand why nothing was happening in my body as a result, which gave me a lot of anxiety, etc.).
I knew something had changed in the erections mechanism (hourglass shape in pre-erect state, blood flowing well in the proximal part of the penis but slowly in the distal part, etc.), but it was difficult to understand how/why.
At the same time, doctors tended to say “it’s all in your mind”, which made the side effects worse.

The only doctor that was honest enough said “we don’t know what is happening” and he suggested that I took low dose Taladafil 5mg (Cialis or other brands) for at least 6 months.
I immediately got better erections but sensitivity was missing. Now, after 1 year, sensitivity is coming back, slowly. Strangely, the tissue seems to be healing from the top (glans) to the midshaft (I would have expected to start from the midshaft to the glans, since the proximal part is fine).

That doctor said that he supposed all this was related to some kind of contracture (high adrenergic tone) of the penis that takes a long time to heal.

So: I think it’s good that current research on PFS analyzes epigenetics, gut flora, neurotransmitters, androgen receptors, etc.
But if we don’t pay attention to the histological changes (tissues) happening in the penis, we may be making a huge mistake and wasting a lot of time.

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#2

@Scott.H @Cooper

I can confirm that Tribulus works.

I did 2 cycles (20 days taking 2 pills each day, and then one week off). I am finishing my second cycle and libido is coming back. I haven’t felt like this in almost 4 years…

But I am also quite sure that the problem is in the penile tissue. The proximal part of my penis is working fine in the erection. But the distal part is not working ok. The erection in that part goes away fast, and I have an hourglass in the middle (between proximal and distal) in the pre-erect state, since one year ago.

My urologist told me I don’t have Peyronie (there is no plaque).

So my guess is that Finasteride has caused either:

  • a dysfunction in how parts of the corpus cavernosum reacts to testosterone (in my case, with a lower/slower reaction in the distal section of the penis)
  • some change in the elasticity of the tunica albuginea, just like in Peyronie, but without a plaque

Either way, the result is erectile dysfunction. I am on Cialis and it helps, but I don’t know if all this is reversible. My urologist recommended that I use a vacuum device for at least 3 months, in order to rehabilitate the tissues.

Any ideas/thoughts about this?

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#3

I don’t have time to write now but did you have a doppler test? If not, you should do one! Thanks much.

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#4

As you say, this is your case. This is not an universal experience. I had many issues (e.g. emotional blunting) long before I had erection problems and obvious penile tissue changes, which only happened after my second crash ten years later. Others don’t even have these penile issues (although they are quite common). There is no reason to believe that penile tissue changes drive this condition. There is no indication that penile tissue changes cause muscle loss or cause skin to become paper-like. And while I understand that penile tissue changes could make someone feel depressed, the depression that I felt was not related to me obsessing about penile tissue changes (that I did not have), it was a much more general darkness that came over me. Hence, I don’t see any reason to believe that penile tissue changes are a key driver of this condition. I find it much more likely that this is one of many downstream effects.

Obviously, penile tissue changes are quite common and we have to ask why this happens. We have evidence that androgen receptors are overexpressed in penile tissue of PFS patients. It is generally accepted that the effect curve from androgens and androgen receptors is a bell curve. That means too much of one or both of them can paradoxically lead to a lower effect (e.g. through gene silencing). That’s probably what drives penile tissue changes and all the other symptoms we know. But that means penile tissue changes is at the end of the process, it is not the driver.

#5

I had one doppler 18 months ago and it showed venous leak and microcalcifications

#6

It is my case indeed, and that of dozens of other men who participated in Goldstein study that showed apoptosis/fibrosis of corpora cavernosa.
This is the only evidence we have right now.
The other hypotheses are just that, hypotheses. As far as I know, AR silencing has not been proven by any test.
To me, the psychological effect are related to the depression and post-traumatic stress disorder (PSTD) resulting from the clear fact that you cannot have a happy sexual life anymore because you took a anti-balding pill, recommended by your dermatologist, that damaged your genitals (even if you cannot see it, the body can feel the problem there: lack of sensitivity, changes in the blood flow, etc.).
PTSD can cause a wide array of symptoms, both psychological (brain fog, social withdrawal) and physical (such as pelvic floor dysfunction). I don’t know about paper-like skin…
But if you can share more concrete evidence/data about the AR silencing hypothesis, I would be very interested in learning more. I guess we should wait for the Baylor study, anyway.

#7

Hmm, do you think those microcalficiations reversible, did that say anything about it? Also have you ever experienced hourglass penis problem before, is there any relations between?

#8

I wouldn’t worry about microcalcifications. Many guys can have them and not notice them (because very few normally go for a doppler…).
I have no clue about the hourglass. My urologist didn’t seem to care. I have been taking Tadalafil for more than one year (low doses, 5mg). The hourglass gets worse, probably because the distal section is “waking up” little by little (I regained sensitivity in that area, that was almost dead a year ago, even with erection forced by Tadalafil).
So I guess it’s just a question of waiting until the part in the middle (the center of the hourglass) also wakes up gradually.
Nature can do wonders, so I try to be optimistic.
Now, the question is: what does that hourglass come from? I have 3 hypotheses:

  1. with Finasteride use, the tunica albuginea got thicker, like in Peyronie but without plaque.
  2. the smooth muscle is contracted (like with any muscle having a contracture, which takes a long time to heal)
  3. pelvic muscles are producing this effect, and are blocking the normal blood flow .

Total mystery…

#9

I understand that penile tissue changes and adverse effects on sexual life may cause depression and anxiety. However, that does not mean that penile tissue changes are always the driver of such symptoms. I had mental symptoms before penile tissue changes. Others have had symptoms before or without penile tissue changes. There are physical symptoms that cannot be explained by penile tissue changes. For example, according to our survey around 50% of participants who took Finasteride report muscle weakness or loss, 32% report muscle aches, around 30% report Gynecomastia.

How do you explain mental and physical symptoms in the absence of penile tissue changes? How do you think penile tissue changes drive those aforementioned physical symptoms? Isn’t it more likely that there is an underlying issue that drives both penile tissue changes as well as changes in other tissue?

That certain genes have been silenced has not been proven, but the whole mechanism makes a lot of sense. Awor has thankfully summarized the basic mechanism again in a different thread:

The fact that androgen receptors are overexpressed in PFS patients has been confirmed in a study (in penile tissue, in fact). The mechanism explains both penile tissue changes as well as the other symptoms above. Focusing on penile tissue changes does not provide an explanation for why penile tissues change in the first place and does not explain why other tissues change. Thus, the explanatory power of the mechanism described by Awor is much higher. Some scientists have accepted it as a reasonable explanation for our condition and considered it worthy of scientific investigation. That’s why we have studies in the first place. And hopefully, the Baylor and future study will provide more evidence that this mechanism is indeed driving this condition and will hopefully provide more details.

Obviously, we will have to wait for these results before making more definite statements. Nonetheless, I don’t see any benefit from focusing on penile tissue changes specifically. It is in all likelihood just a symptom (even if a very common and critical one).

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#10

Thanks for the info.
Actually in my case (and I guess it’s similar for many other people), as I am regaining libido, the problem right now is how to fix the physical part (the mechanics of the erection).
If there was some epigenetic underlying problem, I found ways to overcome it. So I would like to speed up the physical recovery now.

#12

And what about you? Let me know about your experience and what you think about the 3 hypotheses I mentioned above.

#13

So you too have a flaccid hourglass? Is that means i have microcalfications too? Shit… when did it start, and how severe it is?
I start to experience a year after my Accutane usage. Then it disappeared and come back this winter, appears time to time. Especially before going to toilet or holding my poop. When i hold my poop, it becomes hourglass. I don’t know the reason but it can related to pelvic muscles, idk about the hormonal side…

#14

I agree, one of the things that I noticed in my last crash is that I went from a calm and stable mind to a suicidal mind i just hours/days, it was like if my mind had changed again the way to work after the crash.

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#15

According to my urologist, hourglass can have many causes. But if you don’t have it in fully erect state, you shouldn’t worry.
In flaccid or pre-erect, it’s a dystonia of the smooth muscle (corpora cavernosa), related to pelvic floor contraction/contracture.
If you focus on that zone all the time, you can be sure that you will end up having this type of things.

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#16

https://www.google.com/url?sa=t&source=web&rct=j&url=https://wjmh.org/Synapse/Data/PDFData/2074WJMH/wjmh-36-e26.pdf&ved=2ahUKEwjUl77d0PziAhUVH80KHemaAW4QFjAQegQIChAB&usg=AOvVaw1Bot-bsAeUC2UQtut_JQnI

#17

@Copper
I can confirm that at least in my case, the problem is more related to penile tissues.
Yesterday I spent the night with my former girlfriend, she is very sweet and doesn’t care about ED… We went to bed and I felt excited, but the erection was so weird. Hourglass, lack of control of the distal portion. I don’t understand what is going on in the middle, where the hourglass shape takes place.
It’s either a thickening of the tunica albuginea or a contracture of the smooth muscle. But either way, the result is ED.
Any ideas??

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#18

What happens between the cycles when you are off Tribulus? Do you get back to your old baseline, to a better baseline or to a worse baseline? For me it seems I have gotten to a a worse baseline. Also, it seems Tribulus looses effectiveness with every new cycle.

Also, are you sure you are not confusing the effect of Cialis with improved libido? I also feel like I have better libido when I take Cialis - too bad I get bad side effects when I take it…

#19

I am not sure because I just tried a couple of cycles. You should change brands and see

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#20

I have this

#21

For some reason and I ache no idea why…this is largely an ignored topic or at most one of the symptoms on the bottom on the totem poll

Anyone who think this symptom can’t cause anxiety or depression is absolutely out of their Fucking mind and is wrong

This is 100% the cause of both for me. It has become the bane of my existence and I hate to admit that but it’s true.
And there are many who right off the “only sexual symptoms” patients as insignificant, which is also
asinine.
I’m fact I’ve had all those terrible symptoms trust me but fortunately I have bounced back. I’ve posted about the whole gamut of symptoms and it’s absolutely awful TO THE POINT WHERE I WISHED FOR ONLY MY SEXUAL SYMPTOMS.

But know what? Now that I’ve bounced back In every way BUT the sexual symptoms and while I do feel lucky to have bounced back it’s still a major burden on my life to go through this. To not know what sex SHOULD feel like is enough to crumble any guy. That alone is enough.

It’s not an easy thing to talk about because there were the days where I couldn’t enjoy anything or barley get out of bed.
But that doesn’t trivialize going through this symptoms as it’s absolutely dreadful.
It needs more attentions from the Finasteride Accutane and SSRI.

Why is this a common symptom and how to potentially reverse it needs to be a focus

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