Penile numbness has anyone recovered?

If it’s any indication, I eat only once a day, I’m ketogenic so I have over 70gr of BHB a day, I had numbness also (could no finish, my penis didn’t feel sexual, felt like my elbow feels) and it started to get better 9 months in the diet. Now it’s been almost 3 years on the diet and the numbness is gone, or more like cyclical: sometime I’m hypersensitive sometimes I’m less than normal. But it does not affect the outcome (meaning I can come Lol !)

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Hi @Ozeph,
You have no idea how much of a relief it is to read your testimony. How numbness occurs and work is something I could not fathom and it feels great to have something to experiment with.
Congratulation for holding for as long as 9 months, I would have probably stopped after a month if I did not see any positive results, thinking it was not doing anything.

One question though, when you say you have 70gr of BHB/day, do you mean natural BHB produced by the body as you are in a Keto state, or do you mean that you supplement with 70gr of BHB/day? Which is quite a lot! must be expensive ^^

I’m going to implement this diet, I think for me the biggest challenge is to restrain from eating fruits for such a long period of time!

kind regards

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Until something changes on pushing PFS research, it seems to me that epigenetic reset is our only hope. It’s the only way of “undoing” PFS.

Therefore, I am determined to do Ozeph and/or David Sinclair methodology. Thus far, it’s been hard. It takes a lot of commitment. Hard is a million times better than living a tragedy, however. The last 15 years here have been pure tragedy and I don’t see any change in culture/mentality/priorities at all.

Yes. Being ketogenic means 70% of the fat I ingest turns into BHB. I eat more than 100gr of ghee a day so I get more than 70gr of BHB. Ghee is also 2% butyric acid so that’s an extra 2gr+ a day.
The diet relieved much of my physical and mental symptoms which were truly disabling to me. Took only a week to feel better. As soon as I would cheat, I would get sick again so it was a no brainer to stay on course. I’m a satisfied customer. If I quit I get my misery refunded !

(Although my baseline is certainly better now, I can have cheat days without being sick. I’ve been ketogenic since July 2018. I don’t suggest cheating casually if you haven’t done 2 years+ Do cheat the least possible if you’re about to break. Better cheat a little than break and give up )

@vkg1 That’s what I figured. There’s so little options. The diet is hard to begin with (it does gets easier with time) but so much better than being sick. Careful with Resveratrol, Medformin and Trans-Pterostilbene which are all suggested by Dr. Sinclair but made me worst. I suggest NOT using those. I’ve had good results with NMN (Nicotinamide MonoNucleotide).

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Hi @vkg1,

I am not accustomed to Dr Sinclar’s work, has he published papers with recommendations especially for PFS sufferers, or is it something more holistic?

I’d be happy to read what you think is interesting regarding epigenetic reversal.

regards,

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Thank you for your comment. My reference to drug abuse was not intended to say PFS or PSSD patients such as yourself are like substance abusers, but rather reflected that profound anhedonia and even lack of desire and reward for sexual behaviors may have common roots. As someone who suffers from PSSD, my commentary above is actual quite salient to your situation because there is actually a reasonable amount of research regarding SSRI-induced damage to dopaminergic neurons (ie, there is currently no such research findings with PFS on humans or animal). I have actually read more than a half dozen studies linking SSRI to dopaminergic damage in the mesolimbic pathway. The inhibitory effect of serotonin on dopaminergic transmission was first shown along that pathway almost 50 years ago (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6406445/#B20-jcm-08-00133),(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6406445/#B21-jcm-08-00133)]. The increase in serotonin in response to SSRIs is believed to result in reduction in dopamine transmission in key structures associated with pleasure and reward (e.g., striatum).

Please note that there is no such thing as a “mesolimbic nuclei”. There is a mesolimbic pathway which connects the midbrain structure in brainstem known as the ventral tegmental area (VTA) to the ventral striatum in the forebrain, specifically nucleus accumbens (NA) and olfactory tubercle). The common pathway of reward whether natural or by use of substances like with alcohol or meth, is dopaminergic release along VTA to the NA (mesolimbic) pathway. While the process is complex, the mesolimbic pathway has been consistently associated with (and some refer to it as) the pleasure-reward pathway, subserving reward, pleasure from the reward, craving, motivation, sexual behaviors, and others. Depletion of dopamine in this pathway, or lesions at its site of origin, decrease willingness to go to obtain a reward and decrease sexual activity dramatically. There is good animal research as well that has shown that SSRIs decrease firing of dopamine in the mesolimbic pathway, and sexual behavior-related dopaminergic system in the rat altered (see example below). The rats exposed to SSRI did not engage in sexual behaviors and their brains revealed decreased dopamine activity in the mesolimbic pathway similar to chronic meth users (meth is toxic to dopamine neurons). Indeed, this has been the most consistently researched area to explain SSRI-induced sexual dysfunction and anhedonia. Incidentally, escitalopram is the most potent SSRI. It has long been known that serotonin and dopamine systems communicate with each other and can modulate each others activity.

The role of testosterone and dihydrotesterone (DHT) on dopaminergic systems is also an area of intense interest. Research has shown that testosterone and DHT modulate mesolimbic dopamine activity, including by increasing the dopamine transporter activity in the midbrain.

So, I am in the camp that the anhedonia and loss of sexual desire and behaviors may very much have to do with this pathway being disrupted on some level. What the mechanism is by which finasteride achieves this, whether through DHT depletion or some other way, is not known. Unfortunately, simply increasing overall dopamine such as use by levodopa or carbidopa or other agents such as pramipexole, have not resulted in recovery for PFS sufferers no more than giving exogenous testosterone.

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Did you do nerve compression surgery?

Did it have a positive effect?

Just look him up on YouTube or any other number of places…

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Totally agree with this hypothesis.
@sfoch, have you by any chance tried taking bupropion?

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With respect to the quote you used I can confidently say that libido/sexual desire has a huge impact on sensation down there. Not all of it
But since my libido has gone down the last couple of months, so too has my sensation from the inside of the erection
If that makes any sense

The hornier you are the more you feel in most cases at least IMO

I think my brain might be in a lull at the moment and my dopamine system is burnt out or fucked from this TINY bit of an edible I had taken

But my dorsal nerve has been fucked for a long time now
Idk wtf to do

I got in contact with Khera’s office and he wants a referral from my GP…annoying

Isn’t Khera the guy who took all kinds of money from the foundation and then took like 10 years to produce nothing? Since when has Khera been some kind of goto guy for anything, of all the millions or whatever of doctors there are in the world.

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It would be great to hear more from anyone who has made long term progress on this particular symptom. I’m almost at 5 years and it’s my worst and most concerning symptom.

Hello

How long did you take fin for and do you still suffer from low libido/ ED?

Nobody ever seems to. Not people who have PFS/PSSD/PAS. Go look at Facebook groups for all the men, women, boys, girls affected by this. People who actually have these conditions rather than just something else like hypogonadism or short-term side effects from drugs ever seem to recover. It’s deeply sad that we have been sitting here talking about how much life sucks for 15 years without actually just doing whatever it takes to get research started.

Until we get research started, we all have permanently numbed genitals and will never be able to live normal lives of having kids etc.

For me, this particular symptom is very variable. Mostly my penis is completely numb, but I do regain 80-100% sensitivity from time to time. It is almost never spontaneous - it is caused by changes in life, diet, etc. The problem, however, is that these 80-100% will become the norm.

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I took accutane had penis fibrosis and numbness , numbness was cured on 1 pill of 10 000mcg of bioten besically after half the day it was gone for ever, before that took low dose bioten like 500mcg but noting happen till i megadosed it, end up taking it for month and a half but no other changes, still dry face and hair shedding i thought that might get cured on bioten but nothing. Then on ray peat someone said coconut oil for fibrosis and it worked i have morning woods on it, but i wasnt that cosssistent on it, and it did improved my erections. sperm still watery.

I am about 60% back to normal sensetivity

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I’m also in the same boat @iHATEMerck

You still around?

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I had 100% numbness post-Lexapro. Within 2 years sexual function was restored 100%.