These could be separate effects. I only have penile anesthesia in the bulk of my penis but things are much better in the frenulum portion.
Since you mentioned dopamine, here’s a page I found really interesting: how erections work.
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I have to say that even though this symptom is the bane of my existence
After going through a full crash around New Years where my brain, digestion and everything were 7 different kinds of fucked
I was begging for them to go away and just have the ED problems.
Like I said this is the number one symptom for me is sensation
But when you wake up after having really fucked Up sleep…no feelings or emotions
Like NO enjoyment or even bad feelings whatsoever…THATS SCARY lemme tell you
Yes the sensation problem is a terrible thing
I can tell you it’s fuckin awful and yet…it can be so much worse
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Penis sensitivity in my opinion is fully reversible, because I have had it return on two occasions.
- Drinking 3-4 cups of strong coffee daily for months and then QUITTING - gave me back near full penis sensitivity for a day or two
- When I tried Creatine initially, there was a strong and significant increase in penis sensitivity. It disappeared when I dropped it.
This leads me to believe this isn’t the result of some permanent damage to the organ but rather a bad hormonal state that could potentially be shifted the right way again.
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I agree with you, but as long as no one here is doing anything to get more survey participants from other communities, publicize our problem, or facilitate research in any other way, it doesn’t matter. To fix the problem we need research and no one here seems to express any interest in making that happen. So it won’t.
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What can we deduce from this I wonder?
Well both thing he mention can increase 5AR activity so for him It seems like that can help. Other people have crashed from doing so though so it’s a gamble
Right there with you. It’s really astonishing and demoralizing to me how few people have bothered to do the survey when it’s clearly the most real and tangible thing anyone can do to help.
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We have an obvious lack of androgenic activity in brain regions causing the numbness
For the most part I have. Pretty much the only thing that has improved for me
Could AR activity in the brain be measured by a spinal tap? Similar to how someone measured their Gaba receptor density
It could be an issue in the brain, but it’s strange that some parts of my penis give zero pleasure, and others seem well preserved.
I’m trying to understand how exactly sensitivity is broken, for me. Observing myself, I’m getting the impression that erogenous sensitivity (to sexual pleasure) is what drives erections, and that some of the erection paths are broken and others still work:
I have zero ability to get pleasure or get an erection using my hand only (e.g. massaging). Let’s call this a 1st set of “pleasure receptors”. They used to respond to pressure (generating pleasure when the penis fills with blood) but now they seem dead. Without them, no erection, it seems.
However when I get sufficiently erect (see below how), I suddenly have sensitivity from a 2nd set of “pleasure receptors” in the frenulum area (I’m uncircumcised), They start to generate pleasure once my erection is big enough to stretch the frenulum, I think. (I’m uncircumsized.)
I’m doing some self-observation and thinking around where my system could be broken. I’ve been using this excellent piece: https://www.theresearchzone.com/post/simply-explained-erections
It is clear from reading many posts that different patients experience PFS in somewhat different ways (though they present uniformly in most ways). This is not uncommon to medical disorders. The article you posted discusses the vasculature and the natural physiology of getting a physical erection. Most with PFS probably do not have vascular issues to the penis (due to their age; atherosclerosis is disease of elderly men). If the problem was in the penis itself, libido and sensation would remain intact as is seen with patients who get penile implants and use Viagra. They don’t suffer with genital anesthesia unless the actual blood supply to the penis is sacrificed with sclerotic vessels or nerve damage secondary to chronic disease such as diabetes (diabetic neuropathy) and they in fact can get necrosis of the penis! The loss of libido and genital anesthesia (i.e. the normally sensitive head of the penis that makes masturbation or sexual activity arousing is numb and non-responsive in many PFS patients). The pleasure-reward pathway is largely subserved by dopamine. Antidepressants such as SSRIs or TCAs have been found in animal research to be neurotoxic to dopaminergic neurons and it is suspected that the sexual dysfunction (and persistent sexual dysfunction) is related to this dopaminergic damage. SSRIs given to rats for example early in life have altered sexual lives for the rest of their lives. It is hard to argue that it is “in their head” as persons with PFS are accustomed to hearing. This is the common pathway for all pleasure-reward. So it is most likely that like with antidepressant therapy (and with chronic substance abuse), this dopaminergic pleasure reward pathway has been damaged either directly or due to altered signaling epigenetically. The big question is can it be turned back on? Does time heal everyone or not? Medical research may elucidate this but research is a very slow phenomenon and unless there is a serendipitous finding, it will be many years until small insights are made and perhaps longer before there is meaningful treatment. But in our lifetime they have found successful treatments for many conditions (e.g. HIV/AIDS, Hepatitis C, etc…). So there is very much hope.
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I can get a decent erection but there’s no pleasure either with touching or orgasm. There’s only a little bit of sensitivity on the underside of the penis but everything else including the head is numb. Can still feel pinching sensations but nothing else touch related.
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It is reversible guys. Don’t worry. I talked with many people who did reverse it. You need to fix the root cause and everything heals up then. (Also for some here, the issue may be prostatitis. Inflamed prostate itselt can cause numbness because it numbs the nerves around it.)
Hi sfoch, I super appreciate your contributions and learnings, and your explanation explains your symptoms perfectly. When it comes to my symptoms however, I feel a better explanation might be out there (and help all of us refine our thinking).
What’s interesting about my symptoms is that the anhedonia has largely spared one part of my penis (see my earlier post) and this can trigger my (otherwise dead) ‘libido’/desire. Which suggests the problem might be in the penis rather than the brain (you could still be right that it’s neurological).
Other clues: 1. I produce little or no smegma anymore, 2. my brain’s horniness seems intact, 3. a comment I stumbled on online: “Thanks to the research of post-finasteride foundation and an association in france i have been operated by a famous surgeon which diagnostic me a pudendal neuropathy, the finasteride compressed my nerve and the compression stopped the nerve impulse”
Perhaps also worth mentioning is that on rare occasions, I have woken up and I was much more sensitive. I finally clued in to the fact this might be due to sleeping in stretchy underwear (pressuring the frenulum area during nightly erections). I need to test this further and report back.
In 2 years my condition has not improved even the slightest, but I haven’t given up hope on learning to better manipulate my PFS body.
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I agree with you
I took 15 drops of progesterone on my wrist on Sunday and then on Monday I had enough libido to jerk off 3 times and had at least a 50% improvement in penile sensitivity. Sadly it went away the next day.
That seals the deal for me on this shit being hormonal. Progesterone is an estrogen antagonist, BUT aromatase inhibitors do not improve this symptom (they make it worse for me), so some other mechanism has to be at play.
The libido is a mystery as well. When I leave all the hormones and supplements and just remain in my normal stagnant state, it’s barely existent, but if I stir up my hormones the right way it can go to almost teenage level. That’s really stupid.
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Just want to chime in that after using lexapro for a month I noticed that I could actually feel all over my penis touching and tickling sensations. After switching to a different medication it’s still fluctuating but never as good as that one day. I’m assuming the medication lowered my androgens enough that the upregulated receptors were Able to work with it.
This at least shows this numbness is not permanent as I’ve had it for 8 years
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I have to strongly disagreé- we aren’t drug abusers - why would our mesolimbic nuclei have reduced volume? Testosterone upregulate dopamin sensivity, our condition is essential the opposite effect, downregulated dopamin sensivity. It’s consistent with that fact we get windows of normalisation. Have you tried levodopa/carbidopa?
For my sake it was escitalopram that caused my intense suffering, you could perform open surgery on my glans penis, but the rest of my penis had normal sensitivity. I’ve had windows of complete reversal of sensivity of my penis where I ejaculate normally after 5 minutes instead of a 1 hour marathon. Our machinery is there but the signalling is not working!!
Wow man! Was it really like 100% pre-pfs state? Can you objectively remember the sensivity state you had 8 years ago? How was your orgasms btw?