New user experience - thoughts and feedback welcome

Hi everyone

Thanks for all your posts, I’ve been reading them for about a year and between time and intertia haven’t posted yet. If users have thoughts on what I write below that would be really welcome. Never thought I’d write some of these things but it is what it is so there we go !

Unwittingly I have the full house. I used roaccutane as a teenager though never really had any side effects that I know of. However on using Finasteride I had the post-use libido surge people mention on taper followed by the onset of symptoms soon after (days).

I also briefly used Isotretinoin and Nizoral, unwitting to the issues again (stupid I know!); I think they may have made things worse but not radically changed the direction.

The issues I had that resolved are:

  • Orgasms that were basically almost like a hiccup, non-existent in the physical sense before ejaculation. This seemed to resolve when I began taking either Vitamin D or Zinc, it was around the same time.
  • Nocturnal erections: Zinc and Vitamin D improved this, and Taurine and Arginine seem to result in this being reasonably frequent. However it’s normally much more at the end of the night (one of the ways I can tell it’s too early to get up if I wake up and don’t look at my watch is that I don’t have this!).
  • Smaller penis - Tough one as I don’t really remember how it was before and I think some supplements (boron raising estrogen after a few days) caused or exacerbated the issue. Either way, right now it’s basically ok. See supplements below. It definitely gets much fuller when I need the loo etc though, more than previously - I know other people have mentioned this.

Issues that are improved but present are:

  • Multiple wakeups during night. If I get what I’m taking right I can normally either sleep about 5 hours solid or 6 hours with an hour wakeup in between. See below.
  • Sensationless orgasms. Wierd one. If I take my normal supplements below without vitamin B5 I feel nothing, but with it it can be a 4 or 5 out of 10. It seemed to improve after briefly trying BCAA and Cyproheptadine (maybe dopamine resensitisation?) but worsened after trying Choline (maybe Seretonin became too upsensitised as I believe Choline supresses that).

Issues that come and go:

  • Lack of spontaneous erections. I seem to still be able to get this if very attracted to someone but the bar is heightened significantly. I’ve had a couple of times where, without clear reason, I’ve had normal spontaneous erections (clearly much more frequent). Even whilst at the same time having sensationless orgasms.

Issues that have not improved:

  • My sleep time has permanently reduced from maybe an average of 7-8 hours a day to maybe 5 and a half to 6 and a half.
  • In addition it’s almost impossible for me to get that all in one go. If things are going well I either sleep 4 hours, feel awake for about 90 mins then sleep the rest, or get more like 5 and a half, still feel tired but unable to get back to sleep, but can then easily fall asleep for an afternoon nap.
  • Moderate leakage post urination: Bit better with certain supplements like Boron and Butea but still noticeable, also remain after Pelvic Floor Exercises. Basically it’s almost like as soon as I sit down a few drops come out, the “milking the prostate” approach to get a few drops out works but obviously not how I want to be!
  • No mental physical libido: This is a strange one. Basically I mean the mental urge to masturbate. Definitely if I do feel this it’s via the groin as some others described. Which is the biggest reason I fear there may be permanent elements of this. It’s wierd as intellectually I still look at people and find them attractive, want to see them naked (!) etc, but physically I don’t feel much.

Also weird is this didn’t happen when I stopped taking Finasteride. It was about 6m later. You can say it was either time, or the fact I was using Nizoral once or twice a week. But it also hapenned at the same time (to the week) I was extremely stressed at work. I’ve read about people getting stuck in the parasympathetic nervous system vs sympathetic (or vice versa) and wonder if this has anything to do with it. This happened before, and before, Finasteride, just this time it never came back!

  • General lack of sensation in penis outside of orgasm - described extensively by others.
  • Loss of pleasurable sensation when taking a big poop: Must be linked to other issues of sexual sensation. Bit gross but true!

Issues that I’ve never had:

  • "Brain fog": I feel pretty alert even if tired, but obviously respect this is an issue for many. I felt pretty dumb after using cypro, which I think reduces Choline, maybe it’s a bit like this.
  • Wider anhedonia: Still love listening to music for instance.

Questions/observations:

  • The biggest one: So I never was diagnosed before with depression, but would always say I had a depressive personality, and it runs in my family. I read about the difference between dopamine and serotonin depression and it seemed more like the former - if I was very stressed or feeling hopeless I’d be exceptionally tired, want to sleep alot, lose my appetite. Sounds odd but I valued this because it was almost a reset - I’d get so stressed my but then sleep alot and feel fresh at least.

Now if I’m anxious I just don’t sleep well and can’t switch off. This was such a noticeable change post-Finasteride and I’m not clear what caused it. You could say it cured me of a degree of depression somehow but I’m not sure why.

  • Really interested in any thoughts on my loss of mental physical libido. Any views on cause, and has anyone ever succeeded in getting this back? I mean the thing in your head that makes you want to masturbate etc, a bit like you feel thirsty or hungry. One of the few things that once gone for me never ever returned so far even briefly. Like a total switch going off. As I said, I still intellectually find people attractive, but I don’t feel the force in my head physically.

To be clear, I’m saying there are 4 issues, (1) loss of brain-groin link, (2) loss of sensation in groin, (3) intellectual attraction ie looking at someone and wanting to…, and (4) the actual physical feeling of urge to have sex etc in the brain. I lost the first two right away, (4) when feeling stressed at work 6m later, and have never lost (3).

  • Any ideas on what causes my sleep patterns - I know cortisol is involved but it’s wierd that I normally wake up feeling tired but can’t sleep, but then easily can in the afternoon for a nap, or wake up feeling alert but knowing I haven’t slept enough hours, and pretty much like clockwork feel knackered and able to sleep after 90 minutes.

I’ve worked alot on sleep, at first trying to stay in bed as long as possible but that meant about 2 or 3 wasted hours a day. Now I’m trying to accept a bit less sleep so normally feel tired until the afternoon, then sleep for 30 minutes (working from home) and feel great (in terms of awakeness) until bedtime.

Generally with my supplements I get to sleep within 30 mins, which is similar to how I was before.

  • Also on sleep: So I used to get to sleep by “drifting off” i.e just thinking about life and gradually falling asleep. Now that’s really rare. Luckily I had begun meditating before getting PFS and have got into the habit of couting to 4 or so repeatedly in order to fall asleep. I don’t understand exactly why this works but general drifting off doesn’t. Perhaps it’s to do with parasympathetic/sypmathetic nervous system again.

I’m not really an optimistic person but I am quite resilient, very analytical, and also I tend to learn in life through trial and error so though I never wanted to end up crazily using all these supplements it somehow keeps me going i.e. the focus on attempts to improve things.

Supplements currently using and experiences

Zinc (5mg before bed - this and most others used again in smaller amount if I wake during night) via ZMA - seemed to resolve physical orgasm (the mechanics not the sensation) as described above.
ZMA overall (about 75mg magnesium, 2mg B6 before bed) - increases ability to sleep without waking up but more in the early/middle parts of the night. I’ve tried not using it a couple of times and it’s quite noticeable that things go downhill.
Taurine (about 150mg before bed) - helps a bit with sensation, reducing racing thoughts, relaxation, and maye night-time erections.
Niacinimide (25mg before bed) - I read it’s a natural way to feel tired and at times it’s improved orgasm sensation so I use it before bed to get to sleep and just in case.
Arginine (150mg before bed) - Just started using. To control penis size via nitric oxide. And I read nitric oxide promotes sleep (plus Niacinimide reduces nitric oxide, so it’s an offset).
Vitamin D (500IU before bed) - seemed to improve sleep, night erections, mechanics of orgasm, but started same time as zinc, so hard to split the effect. Things have got worse when I’ve stopped either.
B12 (150mg in the morning) - Just started. I use the non-methylated form having read posts here. Not sure if it works but coincided with improvement in sleep in terms of less wakeups and I read it does have involvement in regulating sleep cycle.
Vitamin B5 (100mg in the morning) - taken at night it seemed to give me quite a bit of insomnia, but in the day it gives a bit of orgasm sensation and somehow wakes me up but also makes me feel tired later in the day (which I want). This may be partly imagined.

Previously used if not mentioned above

  • Butyrate: I know this has helped a few on here alot and the timing may have been coincident. Very odd but (since resolved several months later) it moved my bowel movements from wakeup to mid to late afternoon on stopping after taking for a few days, and I began having alot of cramps after running, almost like IBS sounds like or something.
  • Theanine: Wierd one also written about recently by another user. Definitely relaxes/stop racing thoughts/skin feels nicer in a way that is hard to describe. But can almost feel it sitting on top of the brain when masturbating etc - makes it harder to ejaculate and dulls any sensation.
  • Choline: Made me feel extremely depressed and possibly reduced orgasm sensation during and post cessation.
  • L-Carnitine: Made me feel more dominant sexually but seemed to exacerbate sleep issues and lack of sensation in orgasm.
  • Boron: Seems to improve orgasm and urination issues early on but I think it converts to estrogen later, causing penis shrinkage issues, and it also gives me a general underlying feeling of slight rage/anxiety.
  • Butea superba: increased penis size but maybe gave me general anhedonia.
  • Glutamine/B2/Tyrosine: Nothing clear
  • Apple Cider Vinegar: Made me feel like I was sweating acid
  • Niacin flush: seems to reset me a bit when symptoms get worse, may be placebo.

All thoughts and input welcome, many thanks!

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Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)? UK

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?) Medical reference

What is your current age, height, weight? 32, 5’10, 70kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Isotretinoin (2019) Accutane (c.2002), Finasteride (2018), Nizoral (2018) … full house :hot_face:

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1mg falling to 0.25mg

What condition was being treated with the drug? Hair loss on finasteride, use of which coincided with the issue so focussing on it here

For how long did you take the drug (weeks/months/years)? 6 weeks

How old were you, and WHEN (date) did you start the drug? 2018

How old were you when you quit, and WHEN (date) did you quit? 2018

How did you quit (cold turkey or taper off)? Taper, then retried on 0.25mg with hard stop after 3 days

How long into your usage did you notice the onset of side effects? Immediately

What side effects did you experience that have yet to resolve since discontinuation? Please see checkboxes below

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[x ] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[ ] Suicidal Thoughts

Physical
[x ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[x ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[x ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[x ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Please see my first post above

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)? High SHBG

Anything not listed in the above questions you’d like to share about your experience? Please see first post above

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug. Please see first post above.

I tried filling in the survey via link but got an error note, please direct message me if there’s a way I should do this.

Thanks for writing about your experience so extensively @UKContributor, it is appreciated.

Is this still the case?

No worries, I’ve checked and I can access it now! I’ll try to complete on the coming weekend

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