Penile numbness has anyone recovered?

I have been off finasteride now for 7 years and unfortunately haven’t recovered any sensation to the penis. It still feels completely numb at the tip. It has become my new normal. At 2 years post-finasteride I began to recover soft erections and weak ejaculations (small ejaculate volume, weak contractions). The only thing that has helped ever so slightly with the sensation and orgasmic pleasure has been using periodic Cialis. Extra blood flow makes the lack of sensation (and my lack of libido) less unbearable. By about 5-1/2 years I began to have some decent erections with more regularity and the ejaculation was more forceful and more volumes, albeit without orgasmic sensory pleasure. So I am at least able to have intercourse now 75% of the time. This combined with a good acting job helps (ie I have pretend I have libido and into sex!). The presence of severe anhedonia, pleasureless ejaculations, and genital anesthesia suggests to me that the dopaminergic pleasure-reward pathway tracts were most likely damaged by the finasteride. Drug addicts who chronically abuse drugs such as meth and cause substantial dopaminergic neuronal loss in the pleasure-reward pathway suffer the same symptoms. It is my belief that if recovery is to happen it will be natural process (like recovering from a stroke) rather than taking supplements or risky manipulations with hormonal treatments.

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Thanks for your update, @sfoch.

Spot on.
If only we could investigate this in the brains of sufferers.

Have you tried taking any drugs to improve the anhedonia?

Ya my dick numbness is like 90% gone but if fluctuates

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Thanks for sharing your assessment. Do you by any chance have anything I could read about former drug addicts having these kinds of residual sexual effects? I would love to check that out. By the way, I also have relatively recently been trying to accept this as “new normal” and having sex again by being an actor. It does work at least short term. It’s possible to have sex without partners really realizing there’s something wrong. There’s a pretty heavy psychological cost to faking desire, though. It makes you feel manipulative and dishonest. I also don’t know how sustainable it is in the going unnoticed aspect. At one point or another I believe the lover realizes you are not initiating sex normally and something is missing in the two people as one aspect of sexual connection.

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There is neuroimaging research into anhedonia and consistent with my take, it implicates the pleasure-reward pathway and dopaminergic pathways (In healthy controls, a diminished responsiveness to positive and rewarding stimuli in the nucleus accumbens and the anterior cingulate [19, 20], as well as a reduced nucleus accumbens and caudate nucleus volume [18, 20, 21] have been shown to be associated with (physical) anhedonia. This I would suspect would be replicated in a study of PFS sufferers.

Yes I trialed many prescription medications (including but not limited to adrenergic, dopaminergic, serotonergic agonists and testosterone gel) and supplements (including but not limited to yohimbine, MACA, Tribulus, etc…). I tried psychological approaches (meditation, therapy, even attempts to hypnoses). I took travel work so I could travel the country seeing specialists. Indeed there are no known treatments for anhedonia outside of it as a component of major depressive disorder (i.e. for people who start with depression and develop anhedonia, treating the depression makes the anhedonia resolve). There are studies, for example, with vortioxetine that showed improvement on the anhedonia parameter, but again this is a drug that treats depression and risks SSRI/SNRI-type apathy and sexual dysfunction. For me most trials ended up making the symptoms worse or resulted in unbearable side effects as such those just noted. Yohimbine for example led to significant tachycardia, elevated blood pressure, and neurological symptoms (it almost caused me to panic, something I have never experienced). It did not help with anhedonia at all. Noradrenergic-dopaminergic drugs like bupropion and its relatives helped with the low energy and attention/concentration I developed with PFS but it did not help anhedonia at all. When I trialed SSRIs/SNRIs they helped me with the dysphoria, insomnia, and anxiety but caused excruciating apathy and noticeable weight gain/bloating without benefit for anhedonia. Parkinson’s meds which enhance dopamine also were ineffective. I haven’t tried ketamine which has worked for some and quickly. I should ad for completeness that I am fit, doing regular cardio (hiking, biking, tennis at advanced level), lift in gym 2-3x per week, have been a healthy eater much of my life, and have no diseases of western man (obesity, heart disease, diabetes, hypertension, hypercholesterolemia, smoking, etc…). I have regular social relationships with friends, family, and girlfriend of 5 yrs. I have hobbies and passions but these are difficult to enjoy and do with the anhedonia. I am employed and make a good living wage. I am not a drug user. I am not part of any lawsuit to Merck or anyone else. If neurostimulation therapies such as TMS or related can be directed to these pleasure-reward areas (such as nucleus accumbens), I would be willing to participate in the research.

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Yes I agree with that assessment. I was unable to fake desire well enough with previous relationships during the first years after PFS because the women would figure out I was just simply not that into them and certainly never really wanting to initiate physical intimacy (“What is wrong with you? There is a woman lying next to you!”, one girlfriend finally said to me; it was humiliating. Another girlfriend accused me of being gay and not out of the closet.). I didn’t mention that I was a formerly very sexual and passionate guy who loved to hug and kiss women (i.e. normal guy). An ex-GF recently told me I was one of her best lover’s in the past. So you get how that feels. After PFS I don’t like to be touched or hugged which really ads an additional layer of challenge in a relationship. I have managed to hold onto the current relationship but the anhedonia is killing me for sure (even more than the sexual dysfunction). I think how things would have been had I still been normal. I certainly feel guilty that I cannot give more. But I am a human being like you are and we have to do our best in life even if it is not perfect. If I don’t act, I will be alone again and time waits for no one.

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In your case 16 days on finasteride is better than 16 years. It may take 3-6 months but there is hope. For long term users the recovery rate is probably much lower as there was more damage to the pleasure-reward pathway and neurological damage is slow to recovery whether is diabetic neuropathy or vascular insult to the brain. I wouldn’t lose hope. Did you recover other functions okay?

Thank you for updating us all after such a long time away @sfoch. Members of this community often wonder what happened to older accounts which haven’t seen activity for a long time.

While you’re here, are you aware of our Post-Drug Syndrome Patient Survey? Your participation would be much valued, particularly as you’ve been living with the disease for such a long period.

The data gathered so far has already generated interest from some world leading scientists/researchers. The more data entrants we have, the stronger our case and the likelier we will receive the interest and funding our problem so desperately needs.

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Just want to share here that I too suffer 8 years now with minimal pleasure feeling. I feel the term sensitivity needs to be distinguished or clarified here though. There’s sensitivity in the sense with if you can feel sensations on the skin of the penis (such as a pinch, scratch, or tickle) VS the feeling you get within the penis when masturbating or having sex. I will say that I get brief recoveries with the first but not the latter. I can feel things on the surface of my penis but it is not pleasurable to masturbate or have sex and I can not feel my orgasm usually. The only times where I feel that I get a little improvement is when I smoke marijuana and consecutively masturbate. For some reason things feel better the more I have masturbated on days like those and there seems to be an inverse relationship between the amount of semen expelled and how good it feels. Just some observations I’ve made over the last years. Draw what conclusions you will about what might be going on

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Mine stopped once I got off the pill

Didn’t take anything to recover but after 1 week I was back to normal

As an experienced galactorrhea induced by finasteride, I think fina has destroyed my pleasure compensation route and dopamine route.

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I want to agree with you but I can still get thrill and pleasure reward feelings from other activities such as gambling or video games

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Your point is valid. But it is also true that we are insensitive to sexual pleasures. Now I just assume that there is a local route to control sexual pleasure.

This is exactly the case with me too. So it sounds really bad that this isnt fixable. This maybe the worst symptom in my opinion. If I have to name two worst symptoms it would be this and gut. If those would be better in some degree I could live my life somehow. But with these symptom, every day is a struggle and torture. From the first second when you open your eyes it starts. Survival all the time. And it seems that this is the case for the rest of my life. Allthough as I mentioned, after cessation of letrozol that sensitivity and desire for sex restored for one day. So basicly the mechanism is there somewhere but the homeostasis is not likely going to recover. I just cant imagine for the rest of my life with this shit. Its pointless.

Personally I haven’t found a treatment for this symptom. There’s no much info online about the causes. Low e2 numbs you dick for sure tho

“Only” symptom? What a load of rubbish. As expected the fetishistic psychological fixation on the phallus makes people entirely ignore this most severe symptom. In fact, ED is the most conventional and trivial symptom, with tons of research and conventional help. Similar for “libido”. Numbness is the most crushing and mysterious symptom, where the sexual “experience” is supposed to happen but doesn’t. And you can’t assume anyway that it’s the “only” symptom (although nutjobs with their fetishistic phallic fixation might literally not notice one way or the other…)…

Among other things glutamate, particularly NMDA and AMPA function, should help with numbness a bit and recover some sensitivity - althoug it fluctuates. AMPA you can enhance with common nootropics, NMDA, well, there isn’t a single way but many little ways one has to figure out oneself (I haven’t seen a thorough guide yet, but only single anecdotal selections).
You might see this in acute alcohol possibly making numbness even worse, which is related to NMDA blockade.

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Lol dude just chill…I wasn’t trying to make his symptoms less severe or worse, so just stay respectful and again chilllll…
BUT If you really think that sexual dysfunction is The worst symptom in PFS, then let me tell you that you are entirely wrong, and have no idea what PFS is…THe disease is far more worse than ED, and genital numbness…Trust me on this.

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It messes up with brain you might get sexual disorders with or without broad range of mental disorders.
And some mental sides makes you commit suicide…

There is a fair amount of research into substance use disorders, anhedonia, and sexual dysfunction. Here are some free online articles to start with (the first on neurobiology of anhedonia, the second a 2019 article on sexual dysfunction in substance users):

(1) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181880/pdf/DialoguesClinNeurosci-10-291.pdf
(2) https://journals.sagepub.com/doi/pdf/10.1177/2631831819849365