New member, no drugs, life long sexual dysfunction

Member Stories
#1

Hi guys,

I’ve been lurking procepiahelp for about a year and finally decided to make an account. Unlike most of you guys, I have had sexual dysfunction my entire life. I never took any of the drugs this forum is about: procepia, duasteride, anti-depressants, anti-psychotics, accutane, etc.

I’m 24 now. I never jerked off in middle school. Throughout high-school I had low sexual functioning. My dick would be half limp when I jerked off (only reaching full erection when I was close to orgasm), orgasms were lame, I virtually never got morning wood, my penis lacked sensitivity, and I literally have never had a wet dream. I knew something was wrong but I ignored it.

Eventually I graduated and went to college and had sex for the first time. I could hardly feel anything and didn’t come close to finishing. Over the years I had sex with many more girls, both with and without condoms, sober and drunk, and every time I got that same result, except on those occasions when I couldn’t get hard at all.

Around my Junior year of college I finally faced the fact that I had sexually dysfunction and it was not going to go away on its own. Over the last few years, I saw a few urologists and endocrinologists. Normal doppler ultrasound. Hundreds of blood tests, all normal. (Side note: I plan on seeing a neurologist soon, but I don’t expect them to find anything treatable, if they find anything abnormal at all). Viagra, cialis, cabergoline, clomid, pramipexole, levothyroxine, anastrozole, zinc, vitamins, and various supplements didn’t help. I surfed wikipedia, Webmd, ncbi, and other sites looking for information and answers. I read probably tens of thousands of posts across various websites and forums. I read extensively through Reddit, T-nation, Raypeat forum, yahoo answers, Quora, Bodybuilding.com, and various other forums relating (at least tangentially) to sexual functioning. I can say with great confidence that this website is perhaps the only one making any real progress towards curing and/or effectively treating non-vascular sexual dysfunction. Every other forum is basically a bunch of chickens running around with their heads cut off. The same questions and the same incorrect answers in so many threads, misinterpreting studies and constructing wild labyrinths of half-baked, incoherent theories that go no where, charlatans and pseudo-gurus galore. Unlike those other sites, you guys somehow got organized and managed to help put together some very real and very relevant studies (with more in progress) that will help characterize and eventually solve PFS and hopefully solve related conditions (i.e. idiopathic, non-vascular sexual dysfunction). Reading through old posts you can see the gradual evolution of this forum from a desperation-masquerading-as-confidence home-brew pseudoscience hub into the legitimate site this place is today. The scammers and the charlatans (cdnuts et al.) have been gradually expunged and the level of discourse and intelligence has grown to a level unmatched across similar forums.

If anyone is going to characterize, legitimize, treat, and cure idiopathic, non-vascular sexual dysfunction such as mine, it’s going to be you guys. I want to be a part of the forum so I can contribute and speed up this process in whatever small way I can.

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#2

Welcome, firstly. Have you by any chance tried Testosterone directly?

#3

You may have hypogonadism? Have you gotten blood work for hormones? I wonder if you would benefit from TRT, do you also have numb genitals?

#4

Thanks for the replies.

I’ve gotten total testosterone checked a few times and it has always been around 600 ng/dl, except for when I was on clomid, at which time it measured at 1200 ng/dl. I felt the same at both levels. Free testosterone is also normal. As are estradiol and other estrogens, DHT, adrenal level, growth hormone, IGF-1, prolactin, thyroid, and hundreds of other things (most of which I had done privately through Quest labs). Overall I doubt this is a generalized hormonal problem, because I’m totally normal aside from the sexual dysfunction. I’m 6’1", lean, fairly muscular, good head of hair, good teeth, big schlong, and so on.

It seems to me that something very specific is out of whack. Something specific to sexual function. And based on all of the people on here who share my symptoms (i.e. totally normal besides suppressed sexual functioning) I believe there could be some common etiology.

#5

Any kind of medication,supplements,antibiotics,cream or even large quantities of some specific food (exemple soy based food) that you could possibly have taken or ingested (also for a possible prolonged amount of time) before/after or during puberty?

#6

Did you ever try PCT? (chlomid, arimidex, HCG,…)

#7

Would you consider yourself borderline asexual? Asexuality is an accepted phenomenon, though the aetiology is still unknown.

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#8

Asexuals have no problem with sexual function.

1 Like
#9

@Farside44, I would like to thank you for taking time out of your day to share some supportive words. We like to believe somebody out there thinks we’re doing things right.

And I do hope our efforts help to resolve your issues.

I’m assuming you have normal libido and tactile sensation, but lack of pleasurable sensation?

Have you ever considered diagnostics of nerve potential?
A few of the guys here had it done and it was performed as part of one of the studies. Not that it offers a fix, but perhaps some insights into where the problem lies.

Best.

#10

@Farside44 In addition to the food advice you’ve been given by @Dubya_B , have you ever had your karyotype tested? I don’t know what the likelihood of it is, but perhaps you have a non XY karyotype since this has been lifelong. Some non XY keryotypes are phenotypically normal like yourself, but only have subtle sexual differences.

#11

Pretty normal upbringing, only a few things come to mind:

-I was formula fed as a baby
-I got strep throat a lot in elementary school
-Got a couple of random (what I believe to be) viruses in middle school. Sore muscles, headache, general malaise for a few days, then got better and felt normal. Standard stuff for a kid.
-Had giardia and mononucleosis simultaneously when I was 14. This would have been the most likely thing to cause a problem, but I was already in puberty by then, as evidenced by objective measures like deeper voice, armpit/pubic hair, etc. So I was already in that stage of puberty where most every male is horny 24/7, but I felt pretty much like I do now, both proceeding and following those infections. I recovered fully from both ailments (to my belief).

So it’s indeterminant whether my sexual dysfunction is an epigenetic problem analogous to PFS or some inborn genetic problem or a structural problem.

Definitely not asexual. I think about girls all the time and feel the desire to masturbate (although it’s more of a mental desire than an immediate physical urge).

I plan on seeing a neurologist and getting a battery of tests, including nerve potential and whatever other tests might prove useful diagnostically. Hopefully they find something identifiable, but, even if they do identify something specific that is wrong, it seems unlikely that they’ll have any way to treat it with current medical technology. Which is where you guys come in.

#12

Can you post your DHT, Free Testosterone, Progesterone and Total Testosterone results? I would like to see the exact values, even though they are normal.

If you have fractionally silenced 5ar2 that may show as somewhat lower DHT but still within normal range. The ratio of T to DHT could also be informative - i.e. if you have high normal T but low normal DHT…

No doubt you have not been tested for 5ar2 expression anywhere in the body or DHT concentrations in prepuce. If you could do that, it might be informative, I think.

#13

Have you tried naltrexone?..It may do wonders for young ppl, who have idiopathic sexual dysfunction

#14

They have issues with arousal and thus the ability to gain and maintain erections…

#15

You should consider seeing a doctor who specializes in PFS. The most popular option is Dr. Irwin Goldstein of San Diego Sexual Medicine. I’m not sure where you’re located, but if it’s feasible to get to California, he might actually be able to help you. Goldstein has created a lot of experimental treatments for sexual dysfunction, most of which don’t work on PFS victims, but which might work on someone in your particular condition. I also had good experiences with urologist Bruce Thompson of Kaiser San Diego.

Best of luck! Your condition sounds pretty mysterious, but you’re obviously a smart guy and have done some solid research. Let’s hope you find a treatment that works for you soon.

#16

Hi Farside,

I’ve been on these forums for many years searching as well. In recent years not so much.
In about 2013 finasteide destroyed my sex life. For years I had no hope of having normal sex

Erections were 30%
Orgasms 20%

Couple years ago abt 2016 I starting using something called Now Foods dopa mucuna 2 capsules hour before sex. This has changed my life.
You see the last thing I believe that our guys have not checked out is the dopamine levels in our brains.
Though we can’t easily get our brains to create more dopamine we can add some natural ones in.

This together with wellbutrin on the day of sex has helped me reclaimed my life to the point where I’m so healthy in bed during sex but between sex acts I’m not so much.

But just give it a shot…
My test was around 1000,my estradiol was close to normal, never checked dht but proviron never made much difference. I’ve had some luck with like. 25mg arimidex eod but this was hit or miss.

Perfect stack for sex for me is
2 capsules dopa mucuna
150 mg wellbutrin
Half of viagra/cialis/levitra

Hope this helps

Good luck

#17

Hi @Farside44,

Thank you very much for the kind comments on the work we have done to try and get the issue moving in the right direction. It’s certainly been a tremendous amount of work. We’re also of the opinion this remarkable disease will provide a lot of translational insight. I spoke with an expert interested for exactly that reason not long ago.

Regarding your comments: Well, quite. Unfortunately, people need immediate hope, and it’s not the fault of the patients wanting that hope. Those with relatively less severe issues can be drawn to such characters due to the need for self-determined hope, the slow march towards scientific progress and the catastrophic global failure at the clinical level in consideration of PFS patients. This has been very problematic as, instead of just reporting what helped them, what you call “psuedo-gurus” often lean on survivorship bias, saying that the people not helped by their big ideas are [negative/doing it wrong/somehow personally deficient], even when there is such an enormous variance in patient condition and clear reports of differing responses. For instance, with the example of exercise routines, this is not only highly variable between patients (positive for some and negative for others) across thousands of posts, but the responses differ significantly within individual cases who have worsened through re-exposure. Gupta et al. (2016) reported on a case of PFS whose symptoms were relieved by regular exercise for years, before re-exposure and intensification of symptoms rendered this totally ineffectual. Many members, and several of the staff were fitness enthusiasts before PFS. Therefore, it should be more than apparent this divisive behaviour is worse than ignorant when it continues to crop up, but unfortunately there’s a circular aspect to a situation like this. It is far less common now the site is actively moderated. We simply ask those who want to contribute what helped them personally if they are lucky enough to find relief and improvement, without strange assertions regarding others. Sticking to that moderation policy has brought some semblance of reality to the place, although is continually contentious (given 30%+ of the searches run are for “recovery”, it’s apparent why there’s such a confirmation bias).

This site is obviously restricted to members experiencing persistent effects from substances with an anti-androgenic mode of action, but we’ll make an exception as I don’t think you’re here to hawk a vitamin routine. Regarding your situation, as you may know, while testosterone is critical to penile erection (Corona et al., 2016), androgen levels are not the determinant factor of tissue-level androgen response and there is no strict testosterone level threshold for ED (Lackner et al., 2011). Genetics (Zitzmann, 2008) and of course gene expression are importantly determinant as well. If you are able, it could be interesting to have a genetic test to determine the CAGn length in exon 1 of your AR gene (please note: PFS patients reading, this doesn’t apply to you). This can be organised by most specialists in hospitals. 28 repeats or higher could potentially indicate some involvement at the genetic level. This is of course far from diagnostically actionable advice, and just something that could be of interest to see. Do share if you ever get the opportunity, and I hope you’ll have some luck with your planned testing.

Best wishes,

Axo

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