Ncsugrad's PFS diary

Member Stories
#1

USA

Google, no clue–been reading for months

34 years old, 6’, 150lbs

Finasteride for 3-4 years, then Dutasteride for about 2 years

I don’t recall fin dosage. 0.5mg when I was on Dutasteride

Male pattern baldness

Fin, 3 to 4 years
Dut, 2 years or so

~29

~34, May/June 2018

Cold turkey

Years

Penile sensitivity issues and long refractory period are my primary issues.

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

Mental
[ ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[Yes, but not sure if it’s related] 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
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[YES!] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[Developed dark circle under left eye] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[YES, but not sure it’s related] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

I have tried a lot of different things over the last 6 months or so. Maca, Amino acids, pine pollen and HCG are the primary ones

I do not have pre blood tests. POST-drug blood tests originally showed high total test and low free test. A second test recently showed normal’ish total test, but again, low free test. Prolactin was also slightly above the normal range, though not by much.

Basically I started taking Propecia back in ~2013 to stop hair less. It significantly reduced the amount of hair I was losing, but didn’t really do much to help me grow back what I’d lost already. I switched to Avodart in 2016 or so and noticed significant re-growth, so I was happy.

When I first started Propecia I noticed a slight decrease in sex drive, however, mine had always been way higher than my partners, so it more or less just reduced the number of arguments regarding sex, so I didn’t really think much of it. I did not notice any sensitivity or other issues during this time, I just wasn’t as aggressive about wanting sex.

Fast forward to late 2017 and I had been on Avodart for a few years and had just started seeing someone new with a much higher sex drive (woohoo). Everything was OK in the beginning, twice a day was no issue. Somewhere around March I stopped taking Avodart just out of sheet laziness. I had forgotten to get my prescription filled and didn’t really care so I went about about a month without taking anything. 2-3 weeks into that month without I noticed sex felt WAY better. I’m going to call this 110% of normal. My girlfriend even commented “WTF was that?” because I was so much more into it than I had been before then. I couldn’t believe how good it felt. Around this time is when I started making the connection to Avodart.

A week or two later I resumed Avodart. Within a day or two the 110% sensitivity went down to, say 80%. Things were still OK but not spectacular. I wanted spectacular back, so I stopped taking Avodart again (and for good) some time in April, 2018. I got back to the 110% of awesomeness for a few weeks, then it went downhill from there.

Sensitivity went to maybe 40-50% of normal and I noticed it was next to impossible for me to orgasm more than once every other day or so (long refractory period). In order for me to really be sure I could, I’d really need to wait more like 3-4 days, which was not an easy task in a new relationship with someone that is ready to go a lot more than that.

So around here is when I started researching and found info about PFS, etc. I found that the cycling on and off twice in a short period of time like I did was common to a lot of stories like mine, for whatever reason and that this has happened to a LOT of people.

Note: I have never really had erection problems, maybe once or twice at most… but that’s not really an issue for me.

Since then I’ve tried a few different things. The main purpose of this thread is for me to keep a diary of sorts to try to keep up with what works or doesn’t for me.

Main things I’ve tried:

  • Amino acids, MACA and Pine Pollen. Sort of the common natural stuff to increase libido, etc. Amino acids made me hard as a rock erection wise but sex felt… weird. It’s really hard to describe. I didn’t take the full assortment of amino acids for long after sex felt so strange. Perhaps I should have tried it longer. MACA made my head fuzzy feeling but that was about it. Pine Pollen may have actually helped a little, I’m not sure because I was trying other things at the same time. In hindsight I probably should have tried amino acids for a longer period of time. I only took them a few days.

  • Cabergoline. The symptoms of high prolactin matched very well with what I thought was going on before I discovered PFS, so I tried this for a few weeks. It gave me a headache and made me feel weird (seems like everything does?) so I didn’t keep taking it longer term. I did have sex twice in one day towards the end of taking this, but I was also really hungover (which also increases my sex drive) so I’m not sure which was to blame. I hadn’t done that in a really long time, though, but I couldn’t handle the headaches so I quit taking it.

  • Proviron. Made me worse. It seemed to have the total opposite affect on me than it should have. Even at 12.5mg sensitivity went to the worst it’s ever been, near total numbness during sex. I tried 3 different times, always the same result. The good news is it went away quickly and I went back to “baseline”. I never tried it more than 2-3 days at a time.

  • HCG. I saw some stories on another forum of people having some success with cycling either HCG or Clomid. I originally tried this with HCG back in mid December through mid January or so. I was using about 750 IU’s per week for 4 weeks, then stopped for 2 weeks. During the time I was using it I felt… strong, I guess? Hard to explain, but I felt good. Confident, muscles felt harder, erections were as good or better than normal, etc… Sensitivity was about the same, maybe slightly better, but nothing crazy. This was slightly annoying because I was a walking hard-on towards the end of the first 4 weeks but was still limited to every other day or so for sex without it taking like 30+ minutes

  • During the 2 weeks I wasn’t taking it, erection quality went down some, but sensitivity got better. I also felt depressed. It was a weird combination… but made me feel like it was worth trying another “round” since sensitivity actually seemed to get better, so I started again a week or so ago. Same amount, etc.

So, that’s pretty much where I’m at today. In typing all that out I feel like I’ve tried too many things with not enough time on each one, but there’s nothing I can do to change all of that now. We’ll see how cycling HCG goes.

Right now I’m probably at 70-80% of “normal” sensitivity on a good day, at the beginning of sex… but sensitivity almost always gets worse the longer sex lasts, and then there are bad days on top of that… so it can be quite a bit worse. It can go from somewhat close to normal to almost numb in a few minutes sometimes… I am trying not to complain as I still have libido and can still have sex, etc. It isn’t the same, but it’s still a lot better than many here.

Oh, one last thing. My latest lab tests (towards the end of the HCG break) showed mid level total test, LOW free test, HIGH prolactin, and “normal” Estradiol (though it was lower than most on body builder forums say it needs to be). Hoping HCG helps with all of those except Prolactin. Guess we’ll see.

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#2

I felt pretty good yesterday. Had asparagus and steak for dinner last night. Also had some pine pollen and Vitamin A and felt terrible a few hours later. Not sure which is to blame out of all those (if any) but sensitivity got worse and I’m super nauseous today. I seem to remember having a similar issue last time I tried a bunch fo asparagus after someone had good luck with it. Strange if that is the cause.

Anyways. I’m sure it will be fine in a day or so. I’m going to not take anything other than HCG and just do my normal diet for now. Too many variables otherwise.

I was thinking last night–if Proviron increases DHT and makes me worse, would reducing DHT help? I guess the problem is there isn’t anything that will reduce it slightly. Propecia/Avodart are both so strong that they are pretty much all or nothing it seems. And obviously I don’t want to mess with either of those again, though I do wonder what the results would be of extremely small doses. Not going to risk it though.

I did notice a weekend or two ago when I was really hungover two days in a row I woke up the second morning with the best sensitivity I have had in a really long time. This seems to be a fairly common occurrence among folks with PFS, though. I wonder if it’s related to testosterone/DHT levels or something else?

I’d rather not have to be an alcoholic to have my sensitivity back, lol

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#3

It appears my understanding of DHT / SHBG / Keto diet were a bit backwards if what I’m reading today is accurate.

I thought the expectation was the Keto diet would increase DHT levels, but after more reading it seems more likely that it decreases it. This could make sense if our being extremely sensitive to DHT (after not having much for so long) is a big part of the issue. This at least brings levels down a little without going crazy low like they would be on fin/dut. I don’t know or pretend to understand the science behind it, but it at least makes sense to me why it could help.

Who knows. I still have to try it. But I’m leaning more and more this way now that I (think) I understand this. I was originally worried about increasing DHT on a Keto diet after my experience with Proviron but it doesn’t seem like that is how it works now that I’ve done some more research.

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#4

Had some numbness issues yesterday during sex but wasn’t terrible… I’ve been much worse, and everything completed successfully.

This morning morning wood was normal, I had a lot of hair shedding when I brushed my hair and I stunk. I hadn’t noticed any body odor from myself in quite a while, though I usually take a shower at night where last night I didn’t

Maybe these are good things? Guess we’ll see, it’s hard to tell.

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#5

Well, speak of the devil… tried to have sex earlier this afternoon and no-go, numbness was pretty obvious. I guess that was too soon to try again.

Anyways. Perhaps TMI, just trying to keep this updated so I can remember everything later.

Is it weird I’m looking forward to my weeks OFF of HCG? Last time I felt pretty decent sexually towards the end of the off week(s)

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#6

Took 0.125mg cabergoline last night. No issues having sex today. Whether the two are related, who knows. It’s also been 2 days since it worked so that’s pretty typical for me these days.

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#7

How does the caber make you feel? I have some just have never taken

#8

Hard to explain. It isn’t bothering me as much this time but it’s def obvious. A very dull headache but overall I feel a little …happier, I guess? It’s a little weird. I guess it’s the extra dopamine, not sure

When I took it a while back I had a pounding headache for days so I stopped.

Take very small doses if you do take it. Like 0.125mg per week low

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#9

Nothing much new–I’m almost out of HCG, so probably either tonight or Tuesday will be the last of it for a few weeks so I can do the cycling idea I mentioned earlier

Sex wise… seems to be doing pretty good. No issues on Friday evening. Saturday morning tried but couldn’t finish but was still quite into it. Saturday night was a success… didn’t try for Sunday (today), we are both sore. Not a single one of those times turned into a 45 minutes ridiculous can’t get the job done session though, so that was a plus.

So I’m at like 5 times in 4 days and 3/5 successes, though it goes to 100% if you don’t count the times that were less than 24 hours break in-between, which seems to be my minimum these days

Guess I can’t complain when I write it out like that…

The one weird thing I’ve noticed is after drinking Friday night, I woke up at I don’t know, maybe 4am? And felt totally normal sex wise… super super ready to go, but I was also pretty hungover so I just went back to sleep. By the time I felt decent enough to try, I was back to being half numb. It’s really weird how that works. I guess I need to try in the middle of the night sometime when I feel like that just to see if it works. This is the second or third time that has happened in the last month or so.

One note: My sensitivity issues are still there. Its just seems that my libido is higher lately so I want it so bad it doesn’t matter as much. Kind of weird to explain but hopefully that makes sense, somewhat.

#10

vitamin A

Sorry, didn’t read your whole story…

Did you take Accutane?

If so - exogenous vitamin A could be an issue.

#11

Finasteride then Dutasteride, never took Accutane.

Does that mean I need less or more Vitamin A? I tried taking it for a few days at one point and felt weird, but didn’t notice any improvements.

#12

Feeling pretty good, sensitivity issues are still there but I’ve found if I keep things slower then I don’t go as numb. Everything “worked” normally last night.

I’m almost afraid to stop HCG with how I’ve been doing the last week or so, but I still feel that’s the best option. Otherwise I suspect I will stay like this another month or two then crash like most people that don’t cycle it.

Despite the sensitivity issue still being pretty obvious I feel like the increased libido is making it easier to orgasm, which is nice, but I’m really hoping on the HCG off weeks I get some sensitivity improvements

We shall see. I’m out of HCG so this begins the off weeks I suppose. Not sure how long it takes for HCG to wear off and test to decrease, but I guess we’ll see how it goes.

#13

Libido was really high last night and this morning. Significant other is out of town for a few days so that’s making me hold off a few days. Haven’t craved sex like this in a while. It’s going to be a long couple of days

My scalp is getting super itchy on the top towards the back, where most guys end up with a bald spot. Also have been shedding a lot. I’m not sure if that’s good or bad but it makes me feel a little more normal. Every other time I stopped taking fin I would start losing hair, so hopefully this is a positive sign

Who knows though, we will see I guess. I just started the off weeks of HCG so it makes me worry that I’m going to go backwards. But last time my sensitivity got better when I was off HCG a bit, so maybe it will actually get better instead of worse :slight_smile:

#14

I’ve had a LOT of anxiety the last 24 hours. Not sure if it’s related to this or what but I felt exactly like this when I first stopped taking Dutasteride. Heart pounding, cold hands/feet, fast shallow breathing. Pretty much text book anxiety attack. I’m usually extremely laid back and don’t have this issue.

Very weird. It may or may not be related as I had an argument with the significant other last night as well so it may just be that, but I think I felt like this before that happened.

Strange. Will continue to update.

#15

Perhaps try some meditation or breathing exercises to try and calm yourself down if you’re feeling on edge.

#16

Will do, thanks. I’m somewhat better this morning but exhausted from barely sleeping

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#17

Sorry to hear it, things might be tough for a little while if you’re feeling that adrenaline is flowing through you.

Try and do what you can to reduce stress.

#18

Is there a lab test for vitamin A? I am accutane

#19

Yeah, there should be

#20

I’m a week into the 2 weeks without HCG. Starting to not feel awesome. Felt weak and depressed today. Yesterday was day 5 without sex and it was still very difficult to get the job done last night, sensitivity was not good at all. Same for tonight but worse. 45 minutes later I feel like I went to the gym, totally exhausted, lol.

Anyways. I’m starting to think the caber really helped. I haven’t taken any in ~9 days and it’s gotten more and more difficult to ejaculate. I’m going to take another 0.125mg tomorrow and see how next week goes. 3-4 days after I took it I had sex 5 times in 4 days and most were successful without any marathon sessions. It just wasn’t an issue… morning was still an issue once but that’s not that unusual for me

The experiments continue.