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Hi,

I would like to describe my neurological disease. It might help someone looking for answers.
Keep in mind that my specific disease is very very rare (some researchers say that the prevalence is 1 in 1,000,000), but there are similar diseases from the same family of diseases that also cause ED.
If you already spent many years trying to figure out your ED cause and you exhausted all other options, you may want to see a neurologist, because urologists have zero knowledge about this issue.

The Autonomic Nervous System (ANS) plays a crucial part in the erection mechanism. One part of the ANS is responsible for sending the command from the brain to the penis to fill the penis with blood to initiate the erection and the second part of the ANS is responsible for making sure that the blood will stay in the penis, until orgasm.
A malfunction in the ANS is called dysautonomia. There are many types of dysautonomia and a few of them are known to cause ED.

It took me 10 years to be correctly diagnosed.

My specific disease is called "Pure Autonomic Failure" and I have zero erection. Full impotence.
Penile injections can help and also penile implant can help, but I don't intend to use them, because after 10 years of extreme ED, there is not a lot of motivation left and not a lot of penis left (I lost at least 50% of length and girth because of shrinking) and my disease has many more symptoms, some of them life threatening, that make life harder.

If you have questions, I will try to answer them.

Regards.

benny1940 wrote:Hi,

I would like to describe my neurological disease. It might help someone looking for answers.
Keep in mind that my specific disease is very very rare (some researchers say that the prevalence is 1 in 1,000,000), but there are similar diseases from the same family of diseases that also cause ED.
If you already spent many years trying to figure out your ED cause and you exhausted all other options, you may want to see a neurologist, because urologists have zero knowledge about this issue.

The Autonomic Nervous System (ANS) plays a crucial part in the erection mechanism. One part of the ANS is responsible for sending the command from the brain to the penis to fill the penis with blood to initiate the erection and the second part of the ANS is responsible for making sure that the blood will stay in the penis, until orgasm.
A malfunction in the ANS is called dysautonomia. There are many types of dysautonomia and a few of them are known to cause ED.

It took me 10 years to be correctly diagnosed.

My specific disease is called "Pure Autonomic Failure" and I have zero erection. Full impotence.
Penile injections can help and also penile implant can help, but I don't intend to use them, because after 10 years of extreme ED, there is not a lot of motivation left and not a lot of penis left (I lost at least 50% of length and girth because of shrinking) and my disease has many more symptoms, some of them life threatening, that make life harder.

If you have questions, I will try to answer them.

Regards.

Hello Benny, thanks for sharing your story.
You are not alone in this, keep this in mind there are many of us who suffer in similiar way.
I for example can have erections but they dont last. They are useless - imho its even worse, because my dick reminds me hey im there but yeah i can use it only to masturbation maybe and I dont want to do it.
Even I have morning erections that are just waking me up always 6-7 am just to remind me how shit my life is.
Beside ED - I'm also infertile.
Stay strong brother I'm personally with you and many other who are suffering.
Thanks again for ya story, I gave it a read.

s7utty wrote:

benny1940 wrote:Hi,

I would like to describe my neurological disease. It might help someone looking for answers.
Keep in mind that my specific disease is very very rare (some researchers say that the prevalence is 1 in 1,000,000), but there are similar diseases from the same family of diseases that also cause ED.
If you already spent many years trying to figure out your ED cause and you exhausted all other options, you may want to see a neurologist, because urologists have zero knowledge about this issue.

The Autonomic Nervous System (ANS) plays a crucial part in the erection mechanism. One part of the ANS is responsible for sending the command from the brain to the penis to fill the penis with blood to initiate the erection and the second part of the ANS is responsible for making sure that the blood will stay in the penis, until orgasm.
A malfunction in the ANS is called dysautonomia. There are many types of dysautonomia and a few of them are known to cause ED.

It took me 10 years to be correctly diagnosed.

My specific disease is called "Pure Autonomic Failure" and I have zero erection. Full impotence.
Penile injections can help and also penile implant can help, but I don't intend to use them, because after 10 years of extreme ED, there is not a lot of motivation left and not a lot of penis left (I lost at least 50% of length and girth because of shrinking) and my disease has many more symptoms, some of them life threatening, that make life harder.

If you have questions, I will try to answer them.

Regards.

Hello Benny, thanks for sharing your story.
You are not alone in this, keep this in mind there are many of us who suffer in similiar way.
I for example can have erections but they dont last. They are useless - imho its even worse, because my dick reminds me hey im there but yeah i can use it only to masturbation maybe and I dont want to do it.
Even I have morning erections that are just waking me up always 6-7 am just to remind me how shit my life is.
Beside ED - I'm also infertile.
Stay strong brother I'm personally with you and many other who are suffering.
Thanks again for ya story, I gave it a read.

have you ever tried to check and treat secondary varicocele? they say its only for fertile reasons, but its not

PSSDorAmINormal wrote:Never thought about it. Makes sense. I wondered when this happened to you or if there was a cause

My disease is a neurodegenerative disease. There is no known cause and no cure.
It started when I was 34, with mild ED, and over the years it became worse and worse until full ED (Zero erection, no morning wood, no nocturnal erections, no REM erections, not able to masturbate).
After 10 years of "only" ED issues, other neurological symptoms started to appear and only then I was able to connect the dots and be diagnosed with this neurological disease.