My experience so far. Anhedonia and PFS double-whammy

Member Stories
#1

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)?
USA

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?)
Google

What is your current age, height, weight?
30/5’9/145

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Finasteride

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
.5mg/day

What condition was being treated with the drug?
Hair loss

For how long did you take the drug (weeks/months/years)?
1 month (at age 23) 6 days + 2 week break + 1 day (age 30)

How old were you, and WHEN (date) did you start the drug?
30 (5/23/21)

How old were you when you quit, and WHEN (date) did you quit?
30 (6/8/21)

How did you quit (cold turkey or taper off)?
took 1 more pill after 2 weeks

How long into your usage did you notice the onset of side effects?
1st day

What side effects did you experience that have yet to resolve since discontinuation?

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.

Updated: July 4 2021

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

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

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

Misc
[ ] Prostate pain
[x] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[x] 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

[x] Other (please explain)
Waking up hot and covered in sweat during the night.
Feminine fat deposits (lower abdomen, thighs)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
None

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)?

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

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

I’ve basically already had a majorly life-changing brain injury, and PFS would be the very significant cherry on top.

Brief Background:
I first took Propecia for around a month at age 23, and stopped on my own due to not thinking it was worth the cost for my then very mild hair loss. I don’t recall having side effects during this time, but it may have caused some mild sexual problems as I found it hard to ejaculate when I had a partner (I attributed it to using a condom and masturbating too much though).

Big change for me happened in March 2016 when I had an elective surgery, with 6 hours of general anesthesia. To save a lot of details, the anesthesia was not done responsibly and/or I had an unusually strong adverse reaction (agent used was Isoflurane gas, which is known in literature to be neurotoxic). I had delirium /derealization for a while, after about 6 months symptoms stabilized to where I have some lingering cognitive deficits, but by far the worst symptom is I have severe physically-based anhedonia. I have not once in 5 years been able to feel any level of emotional joy or fun higher than feeling “content”. Not from travelling, dating, therapy, even from any drugs I’ve tried in experiments (alcohol, weed, strong opiates). Trying to re-imagine how I felt in a “happy” memory pre-injury is as useless as trying to make myself sneeze, same goes for dreams. So I strongly suspect I have permanent opioid receptor damage, but dopamine system still has some functionality (Like I can still at least have good physical sensations like orgasm, taste sweet food etc).

This of course sucks big time, but after 3 years of just being in a sort of suicidal/depressed stasis, just playing games to distract myself and living off a dwindling passive income from my prior business, I had some inspiration that led me to come up with a new philosophy of life. Basically, not caring about “being happy” or not, but just living life like a game, where my “satisfaction” comes from constant improvement, optimization, leveling up. That along with some other changes helped turned things around for me a fair bit even though my injury is the same.

Present Issue with Finiasteride
I found a GF online who lives in UK and we’d planned on meeting up for the 2nd time a week from now (June 22). With this trip upcoming, I was a little concerned about how much my hair has receded so I bought Propecia using Roman, and started taking it again 24 days ago (May 23). I was wary of the reports of side-effects, so I cut the 1mg pills in half (taking 0.5 mg). I noticed ball-ache the very first day, and then over following days noticed softer erections while masturbating, and it being harder to orgasm. I stopped taking it after 6 days to see how symptoms improved.

After a few days I notced continuing mild ball-ache, but I could ejaculate almost normally again. 2 weeks later hair shedding started back up and I resolved to try taking just .5 mg every other day and log symptoms. I took 0.5mg fin on June 8th and noticed sides right away again and stopped, ball ache and lots of trouble ejaculating. In the days following, I noticed mild ball-ache but was able to ejaculate close to normal (a little more difficulty) and felt normal (for me). Then on the 14th I woke up feeling large amounts of lethargy. Had to interrupt my work from home and take a long nap during the day. It was also difficult to get an erection masturbating, and extremely hard to orgasm. I noticed explicitly for the first time that my penis physically felt less sensitive. Did some research about PFS online, and also realized that my penis was smaller than usual when flaccid, and my scrotum was hanging much tighter than usual and balls felt maybe 30% smaller (Don’t know when these symptoms actually started as I didn’t pay that much attention).

I was very stressed going into the 15th (yesterday) that I could have PFS, and slept poorly. I had more lethargy and depressed mood. I tried masturbating and actually found I could not get hard no matter how much I stimulated my penis, which has never happened before. Penis felt very numb to any pleasure. I was in a very bad state, lots of suicidal thoughts, thinking how fucking unlucky it was to have this second huge misfortune in my life. Told my GF about it and she was actually supportive and still wanted me to come see her even if my dick didn’t work at all. That calmed me down a lot, and I was actually able to get an erection and masturbate to orgasm, still with unusual effort. Penis still felt more numb than usual but it was a huge relief.

Today I again feel more than usual fatigue (physical and mental) and lower mood. No morning wood. I tried masturbating and could get maybe 85% hard but not masturbate to orgasm despite trying a while. Penis still has markedly less sensation, and looks unusually small and shriveled when flaccid. Balls are still hanging tight and feel small, as if the weather was cold, but it is quite warm where I live. I’m still concerned about the possibility I have PFS, but a lot more calm than I was yesterday. My plan is to keep observing symptoms and avoid masturbating at all for a few days, and experiment with some sildenafil at least once before leaving on my trip. And after my trip, evaluate and get some bloodwork done.

If you have additional tips or perspective, I’d appreciate it! I realize it’s early days still, just trying to stay productive and tell myself there’s no use to worrying since I’m already researching/doing everything I can. Thanks, and best of wishes to everyone.

#2

Give it 3 weeks. Expect the penile sensitivity to be the same for a while. If it’s past 3 weeks, that symptom will either stick for a long time (maybe forever) or it will gradually improve. Some people see a significant reverse or improvement of symptoms in the 6-8 month mark. Try to take your mind off of the problem. As symptoms improve, it will be easier to do, but for right now, your mental health is the most at risk.

#3

If it’s past 3 weeks, that symptom will either stick for a long time (maybe forever) or it will gradually improve.

Do you mean 3 weeks, or 3 months? Thanks for your insight.

#4

Three weeks. If it’s past 3 weeks and you still have that problem, then it will probably stick for a long time. A long time meaning either months, to years, to infinite. I’m giving you my honest opinion from my personal experience, the experience of others, and from my urologist. However, you still have A LOT of time left, and it’s not worth overthinking what it might become. A lot of people improve over time, so you may just be in that same group.

#5

Thanks, well that’s good to know at least. No point in worrying. I’ll update in a few weeks.

1 Like
#6

@JasonM, did you try Wellbutrin for the anehedonia?

#7

@orthogs Yes. As it happens, I was on Welbutrin for depression (with good effects) at the time of the surgery that fucked everything up, and probably had some in my system at the time of the anesthesia (no idea if this played a role or not). But afterwards, Welbutrin gave me (and still does as of a couple years ago) very weird brain zap headaches in a certain part of my head, and has no good effect. Almost like it’s trying to activate some part of the brain that has been damaged, but it is impossible to speculate of course.

Clearly, everyone here knows that even our best science is still in the Stone Age when it comes to understanding certain systems of the body, and the brain would be at the very top of that list. Appreciate the suggestion though and if you or anyone else know any other low-risk treatments for the Anhedonia to maybe try, that would also be appreciated. I’ve found a way of living that’s just slightly above “tolerable” at the moment, and I’m very cautious of making anything even worse.

2 Likes
#8

Spot on.

1 Like
#9

Morale is low again today, energy and libido very low. Updating because I examined my face today and found the smoking gun. My beard hair is usually black, but I found many hairs that start black at the tip but gradually turn from red to blonde to colorless. The discoloration extends to about 1/3 of an inch from the skin in all the affected hairs. This corresponds to about 3 weeks of growth, pretty much exactly when I started taking Fin! The fact that it seems to be a completely smooth progression to colorlessness through the hair, with no darkening corresponding to my 2 week break before I took the last dose, doesn’t seem promising for recovery. Who knows though.

#10

Somewhat of a nice update! Was feeling down for most of the day yesterday, and ended up taking a very long nap. Woke up feeling less fatigued but still depressed. I happened to find some very nice porn in my feed, and had the urge to masturbate so just went with it even though my plan was to abstain for a few days. Was able to do so twice eventually, even though it took a little longer than normal, and had some mild ball pain. Took some melatonin to sleep, and when I woke up this morning I was amazed to find that balls were hanging 100% normally and seemed less small than before, and my flaccid penis had unshrunk itself about 90%! Didn’t have nearly as much depression or fatigue throughout the day as well.

I lifted weights for about an hour, and pretty much instantly my balls/penis have returned to their shrunken form for the last 5 hours. No fatigue or depression yet, hopefully I haven’t triggered another crash. Going to view this as a very positive sign though, and I’ll abstain from exercise the next few days to see if I can get the boys to unshrink again.

#11

The improvements I noted last time have returned. I seem to be 85% recovered physically. Balls tends to clench up a little more often than usual, still seem slightly smaller. Penis is about 90% recovered. Libido is about 75% of what is was formerly, but much better than the crash. Sleep has been decent (with melatonin) and the low mood and fatigue I was experiencing seems to have gone away 95%.

I am acutely aware though that this could very well be the “false recovery” that happens to many, soon to be followed by a crash in 2-3 months.

In particular, my case so far seems to be mirroring extremely closely to @Hanru_Sun and @swq5803000. Also of note is that they are both Chinese and I am of half Chinese ancestry. Hoping for the best, but bracing myself for the possibility of a much more severe and persistent return of symptoms in August or September. I feel like that is a critical milestone.

#12

You can’t change the past, and the future you think about is always changing every day. Only worry about what’s happening today, right now. It seems like you’re on a good track, just keep a good mentality throughout both lows and highs. Best of luck.

#13

I also had a weird period of masturbation temporarily relieving my symptoms. However, more recently, abstinence has been giving me better conditions, including sensitivity and overall happiness. The early stages of the syndrome are definitely a variable in terms of hormonal effects from my experience.

#14

Yeah, not actively worrying about it but I think it’s good to have as realistic an outlook as possible. I don’t want to get blindsided and emotionally destroyed again if symptoms come back.

1 Like
#15

I understand. I’m also taking some mental precautions for my current predicament; just so I don’t become too optimistic. Though, I’m not overly thinking about it as I have been.

#16

Update:
15 days since last dose, 10 days since first crash

I’ve noticed muscles have seemed to not respond to exercise last several days, and have even shrunk considerably despite exercising especially arms and thighs. Girlfriend even mentioned that I seemed thin, she put it as having a cute high-schooler vibe. Had great sex on the 22nd, but woke up covered in sweat with a weird hot flash. Ok sex on the 23rd yesterday, sensitivity seemed lessened. And during the night jolted awake several times with more hot flashes. Sheets were wet with sweat.

Felt some fatigue this morning and saw my girlfriend off to work. When I was alone I researched hot flashes and propecia and see several similar cases. All of them associated with very bad long term outcomes. Try to take a nap to destress and rest, wake up hot again with my shirt entirely soaked and feel the worst depression/coldness I’ve felt since the early days of my brain injury. Can’t get myself to focus. Try to look at porn and l can barely get hard but libido seems turned way way down. I start envisioning the future and am in in absolute suffering for a while, coming to grips with the likelihood that my libido will gradually diminish to zero, I won’t feel any warm feeling for my girlfriend, my muscles and face will waste away, and lose the masculine drive I’ve always had to fight for myself.

My brain injury anhedonia took away most of the “feeling good in the moment” type of things, but I was able to restart by trying to focus on improvement, and building a good future for my girlfriend and myself, and I see now a lot of that was tied to my libido. It seems like that’s getting ripped apart, leaving me with absolutely nothing to live for. Was absolutely suffering and let myself cry for a while. Collected myself a bit now. There’s no real solution to this. Suicide is probably the eventual answer, for now I’m just going to keep trudging along until the wheels fall off everything even more.

Edit: One more symptom of note, my penis when erect now has a slight twist to the left on its axis that never existed before, especially the foreskin.

#17

Hang in there brother!

What kind of injection did you take? Can’t seem to find it in your posts.

Also what really helped me with my balls was Creatine. I’ve always have low hanging balls but even over 1 year after quitting Fin they was kinda close to my body. Like they do when it’s cold even though it wasn’t cold.

What helped me with this issue was Creatine, 5g every day.

They now hang like pre Fin. It did increase my hair loss though, and also got some pimples on my back/face. But that’s a non issue for mer personally.

#18

@Cbrandel Thanks for the support. What do you mean by injection? My symptoms have been caused by anesthesia (isoflurane) and finasteride. Did creatine help with any symptoms besides how balls hang? Messing more with my hormones/brain for just cosmetic reasons is something I just can’t do anymore with my luck. I decided I’m going to try to fight this however I can though.

#19

I though I read you had some injection, but now I see it’s saying “dose”. My bad.

Yeah I got some slight improvements in other areas. Like the tip of my penis was kinda of white and very cold.

A few weeks after starting Creatine the color and warmth increased. Slightly more spontaneous erections.

Also I feel my “drive” to do things slightly improved.

I don’t feel cured or anything and my blood work show x2 the range in both prolactin and Progesterone.

But just getting 10% better is still a nice feeling imo. Creatine has been studied for decades and it’s shown to be both effective and with no or few adverse effects.

Some people have reported feeling worse on Creatine though, so it’s up to you if you want to try it out.

#20

Month and a half update:
Things have are generally worse all around.

Libido (at about 40% of what it was before, still get some spontaneous erections around girlfriend and can have sex. No morning wood)
Fatigue (worse, feel tired no matter how much sleep I get, especially mentally. always sleep after working)
Facial wasting (hollowed out eyes, cheeks. Jawline seems to be less defined than prior photos, even though it seems unlikely that bone changes could have occurred so soon. Asked others and they confirmed my impression)
Skin quality (New crows feet wrinkles when smiling, skin feel sslightly stretchier and looser everywhere, especially noticeable when rubbing my face)
Muscle wasting (worse)
Feminine fat deposits (worse. Love handles, fattier thighs with stretch marks underneath, never had those before lol)
Night sweats (Wake up a few times a night with soaked shirt and sheet)
Emotional blunting (Worse… don’t feel competitive about video games like I used to. Feel a lot more apathetic about my relationship, and everything)
Penis/testicles (Constant shedding of dead skin on penis, developing weird dry unpigmented areas on shaft, length and girth seem slightly decreased. Testicle size has shrunk more since last time but are also hanging more naturally)
Penis numbness (worse than last time)

Now that I’m back in the country, I’m seeing doctor tomorrow about getting some blood tests done, not holding out hope they will accomplish much. Most notable symptoms to me are the emotional blunting and mental fatigue I’m feeling constantly. Not a very good progression, saddening, but I’m mostly just feeling tired and apathetic about all of it.