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 itās strange that some parts of my penis give zero pleasure, and others seem well preserved.
Iām trying to understand how exactly sensitivity is broken, for me. Observing myself, Iām 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). Letās call this a 1st set of āpleasure receptorsā. 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 āpleasure receptorsā in the frenulum area (Iām uncircumcised), They start to generate pleasure once my erection is big enough to stretch the frenulum, I think. (Iām uncircumsized.)
Iām doing some self-observation and thinking around where my system could be broken. Iāve 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 donāt 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 āin their headā 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, etcā¦). So there is very much hope.
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I can get a decent erection but thereās no pleasure either with touching or orgasm. Thereās 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. Donāt 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).
Whatās 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) ālibidoā/desire. Which suggests the problem might be in the penis rather than the brain (you could still be right that itās neurological).
Other clues: 1. I produce little or no smegma anymore, 2. my brainās horniness seems intact, 3. a comment I stumbled on online: āThanks 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 impulseā
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 havenāt 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, itās barely existent, but if I stir up my hormones the right way it can go to almost teenage level. Thatās 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 itās still fluctuating but never as good as that one day. Iām 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 Iāve had it for 8 years
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I have to strongly disagreĆ©- we arenāt drug abusers - why would our mesolimbic nuclei have reduced volume? Testosterone upregulate dopamin sensivity, our condition is essential the opposite effect, downregulated dopamin sensivity. Itās 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. Iāve 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?
Honestly I donāt remember what pre pfs is supposed to feel like, just that it was a marked improvement. Sadly orgasm stayed the about the same but with increased libido it was still more pleasureable if that makes sense
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You still using progesterone ? Same thing happened to me when I used preg/dhea to increase progesterone. Sadly results were short livedā¦
If you have a pudendal nerve demage is impossible recovery.
If it is not severed there is a change for recovery unlike central nerve tissue in spine and brain peripheral nerves has some regeneration capacity think like if you hand or fingers severed if they can reattached them In time you regain almost full mobility. Of course this is bind to extent of damage to nerve
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I donāt think if brake but I think this damage O on fireā¦ If I have a sexual performance whit cialis 2.5 is a good but after I have a pain at bases of dick.
The pain is localized on gluteal when I sit. If I have a broken nervous I think itās impossible have a erection
I have penile numbness most of the time but for me I have definitely noticed this symptom to have fluctuated over time, even having a short period of time where my erections could get pretty damn hard and the sensation was a bit better. I just donāt know what caused it.
So in my opinion it might be reversable, if only we understood the mechanisms behind it.
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For me it seems to happen when I lower androgens or increase estrogen? Iām not sure like I mentioned it happened when I started lexapro and I get the same feeling when I smoke a lot of thc and masturbate a lot, it crashes me in the sense that Iām fatigued but erections are stronger and sensitivity way better
Yes I know a couple of guys that retored the sexual feeling.
At 3 months post finasteride, my guy had recovered erection, but felt very little, one specific day that I recall. Keep your cool. It is tempting to āget rougherā in order to feel something, but being super crazy can result in permanent damage. Try not to freak out. Breathe. Go gentle on yourself and your psyche. Time plays a big part in PFS recovery, so distract yourself with positive and healthy living (& only positive healthy partners).You can recover. Donāt harm your tool
In the meantime 