Scott's Story - Age 31, loss of everything

#38

I’m taking a Vega protein shake almost every day. That along with BCAAs, Citruline, Tryptophan, L-Carnitine, and a host of other things.

I’ve been doing the amino acid thing for a good month now, it began really good, but now it seems like its not working any more.

#39

Im really sorry to hear that the effects didn’t hold up Scott. Why don’t you try excluding the Tryptophan? Read up on stories about Tryptophan, many experienced counter productive effects after taking it in excess.

Are you taking cartinine tartrate? Or acetyl?

#40

Hey guys,

Quick update: I’ve just seen Dr. Irwin Goldstein and will give my review of the experience below:

Large in part, I would think long and hard if you want to go to San Diego and spend over $1000 to see the man. He is very friendly, but not the best listener. He’s been doing sexual medicine for a long time, been on trial for Finasteride, and loves to keep telling you that. He doesn’t really respond to hard-hitting questions well and kind of just blows them off, assuring you he’s an expert and whatever your saying is just theory (which is probably true). But in listening and asking questions, he truly doesn’t know any more that what has been on this forum for years. What he likes to do is ask you to rank your symptoms all the time - “What symptoms are your worst, the one’s you’d like to get taken care of first? Rank them 1 -3” This seems to be what he does with everyone and then he attacks them in that order. I told him mine we’re 1. Insomnia (I need to sleep) 2. Libido (i feel nothing towards opposite sex 3. ED and sensitivity. He basically just stopped at insomnia and libido and prescribed me what is called ‘Addyi’ (Flibanserin) Addyi is a drug that is primarily used for post menopasual women who have lost their libido at an older age, but it often has a similar effect on men. You take it at bedtime, it’s supposed to help you sleep, it takes 2-3 months to start working before you start feeling some sexualness again. Apparently a 3rd of people feel nothing, another 3rd start having occasional sexual thoughts that weren’t there before, and another 1/3 feel like they did when they we’re 18, sexual raging all the time. I’m getting mine delivered soon but would love to hear if anyone has had success with this drug.

He also prescribed me some ambien for sleep.

The whole process was relatively rushed, he seemed mostly concerned with just easing my worry, tellingme his stories, and telling me there really isn’t much that can be done for a cure, but we can give you things that will help.

I made sure to ask him about the infamous study at Baylor university, he says he knows all the doctors who are doing the study and has no idea when it will come out. But what was more interesting is when I told him that there are hundreds of men on support forums like these who are holding out hope that this study will finally be the smoking gun that gets us out of this mess, he wasn’t so confident. He said, at best the study will confirm what we already know, whether there’s epigentic changes in some people, or that the enzymes that allow for proper neurosteroid creation have been irreparably damaged. He said, it most likely reveal any kind of cure, but would just provide further proof that there are indeed physical changes that occur from taking finasteride. He didn’t seem to be too curious about what was in play in the study, as he’s tried so many things that really don’t have much of an effect. When I asked him why only certain people get affected and others don’t, he used the metaphor “We’ll a ton of people smoke cigarettes, but only 10% get lung cancer. It doesn’t have a complete blanket effect for some people.”

I also asked him about Andractim DHT treatment, and he said he has had success with patients who have low dht in the past (my DHT to T ratio is off, with T being high and DHT being low). He suspects that conversion mechanism from T to DHT is still damaged, and it may be worth supplementing with DHT. Does anyone know where I can get a link to purchase the Andractim? I’d like to try a very very low dose to see if I have a reaction. I’ve tried looking on the forums but to no avail. It’s supposed to get purchased overseas.

Overall, the experience was just as expected, not much insight or real help, but we’ll see how the Addyi affects me. It’s a shame really, I feel like the whole thing could have been done over the phone honestly. Not sure if its worth it for the price, but I’m desperate and I think they prey on people like that a bit.

Otherwise I’m doing pretty much the same. The Ambien has helped with the constant waking up, and I seem to be getting a much longer sleep now which is nice. I’ve long harbored that it’s been a lack of real sleep that has prevented the body from truly healing itself. So hopefully this extra sleep will have an effect.

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Where can I get Andractim or AndroHard?
#41

Google “narcolepsy”. it’s about waking up and falling asleep dozens of times at night and feeling sleepy all day.
This is the way my insomnia manifest itself. Is it the same for you ?

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#42

By the way Tryptophan didn’t work for me either.
But I’m having success with 5-HTP 100 mg in the morning along with 500 mg of Tyrosine.

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#43

Hi Scott, did this have any positive or negative effect?

#44

Have been on it for two months, haven’t felt anything good or bad. It takes a while to build up in your system to have any effect, around 2 months supposedly. Haven’t had any effect. It apparently works on some people, while others feel nothing.

#45

Hi @Scott.H
What did Goldstein tell you about what you explained before, having the first half of the penis normal, and the other half numb?
Is it Peyronie or something else?

#46

Which half?

#47

I stopped Finasteride in 2015 (I just took it for a few months).
Since then, the proximal part of my penis (“first half”) looks normal, even in erection (difficult to get and maintain, anyway).
Whereas the distal part (“second half”, between midshaft and glands) is impaired for some strange reason. Smaller, weaker, much slower to fill with blood.
I also have hourglass in flaccid and pre-erect state sometimes.

There must be something damaged at the blood vessels level, maybe in the mid-shaft, which prevents the normal blood flow.
Like a sort of Peyronie, but without plaque.
I saw 2 urologists and they are clueless about this.
I had an MRI and normal.
I had echo doppler and showed venous leak with a few micro-calcifications (2mm).
Hormones all normal.

So I guess the answer comes from an impaired ratio between elastin/collagen in smooth muscle (perhaps following apoptosis and fibrosis/scarring, but not like Peyronie, because there is no visible plaque).
I have been on daily Cialis for 1 year and noticed a slight improvement, but still far from what I was before Finasteride.

Anyone experiencing the same?

#48

What you exactly meant by “base of the penis starts further away” in your old posts? I think i have a similar feeling but im not sure what you felt and whether is the same thing or not. When i erect, there is a sharp tight feeling at the lower middle of my penis. (Especially when i squeeze my pelvic floor musclez, tilting the penis upwards) Do you mean that thing? Im curious.

#49

@aldo This is precisely what I have as well, very good description. The base of my penis is as it has always been, then the distal half (between mid-shaft and the head/glands) has atrophied. This leads to an hour glass like shape when the penis is flaccid, and general weaker erections.

Goldstein told me this has to do with two things:

  • the smooth muscles in the penis being deprived of DHT.
  • The lack of spontaneous, morning, and nightime erections. These erections are important exercise for the penis, much like lifting weights for the penis, and are important to maintain smooth muscle and erection health.

Additionally, this leads to lack of general blood flow to the penis. I imagine this must have something to do with lack of sensitivity in the area as well.

I’ve thought that putting andractoral (synthetic DHT) directly on the area that is affected might alleviate this issue. But I’ve only done this a few times as I’m hesitant about really cycling DHT cream as it could make the issue worse at the receptor level.

Any ideas on how to potentially address this issue? Interesting thought on impaired ratio between elastin and collagen.

#50

I don’t really think blood flow is the issue… unless blood isn’t the same as raging hard on. Because I can get those… but sensitivity still sucks.

Or maybe it is somehow. I have no idea really.

#51

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

In my case, this was the reason why the PFS was 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, 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 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 studies 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.

Maybe I can start a new thread on this topic?

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#52

Did this medication affect your orgasm quality at all?

#53

I’ve been thinking of this for a long time, it’s great you have some doctoral insight into that particular issue. The part that has always been such a clear and obvious physical change has been the shaft of my penis, when the hourglass goes away, it seems other symptoms go away as well. It’s such a cornerstone issue of this syndrome for me that I feel it really can provide some direct insight into our issue. I’ve tried putting andractorol liquid directly into the shaft, but haven’t noticed much immediate difference.

#54

In my experience changes in penile tissue are not pesistent and are caused by either lack of hormones or neurotransmitters which controll sensitivity and bloodflow obviously. When I have my 3 day improvement caused by supplements or whatever my penis is pretty much normal regarding size and form.

#55

I don’t know if anyone else is like me but I never have these three day or week improvements that everyone talks about. My sexual symptoms are always the same. Only thing I get improvement from is sometimes fatigue and anxiety

#56

Have you tried any supplements?

#57

Tribulus, amino acids, ginkgo, iodine, 5htp, horny goat weed, maca, r-alpha lipoid acid, magnesium, dhea, pregnenolone, ashwaganda, phosphatidylserine, broccoli sprout extract. Just those off the top of my head but I’m sure there’s been more over these last 6-7 years