Thanks, well that’s good to know at least. No point in worrying. I’ll update in a few weeks.
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@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.
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Spot on.
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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.
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.
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.
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.
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.
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.
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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.
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.
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.
@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.
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.
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.
3.5 month update
Improved
Libido - Improved a little bit. About 50% of what it was previously I’d estimate. Still no morning wood.
Started going to the gym again and noticed more muscle soreness compared to last time.
“Hot flashes” during night have largely stopped.
Dry skin/shedding around penis has improved to where dead skin isn’t constantly shedding. Still dry.
Same:
Still more of a belly, but feminine fat deposits have not increased.
Constipation - still have consistent “poo pellets” unless ate something that caused very soft stool.
Leads me to believe the cause is due to the smooth muscles of the abdomen weakening.
Testicle shrinkage - Still about 2/3 of previous size.
Muscles haven’t improved or gotten much worse.
Worsened
Facial wasting - Has continued to progress! Less facial fat, thinner neck muscles, much more wrinkles under eyes, crows feet when smiling. I look like I’ve aged 7 years in 3 months. Family members also noticed marked changes compared to pictures of me from 3 months ago.
Skin looks looser in general. Some pigmented areas appearing on forearms arms.
Fatigue - Get sleepy a ton more easily. Worst symptom in terms of quality of life.
Much more frequent urination, at least double. Probably enlarged prostate.
Treatments: Had blood work done and everything including testosterone came out “normal”
Overall, I’m glad that I haven’t followed the timeline of some unfortunate others where libido plummeted after 3 months. The facial changes and prostate issues show that this is still progressing though. The worst thing is still the fatigue and loss of motivation/drive to do things. Praying my body can beat the odds and recover somehow. I hope everyone here is doing the best they can managing this shitty condition and spreading the word. I’m happy to report I’ve warned off 2 family members from taking this poison.
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Hi @JasonM
I’m sorry to hear you haven’t improved over the first few months. I would repeat the advice I give to all new members though in please give it time. In the first 6-12 months, I was an absolute shell of a human being and didn’t think I’d make it past that first year.
Many patients notice improvements after that first 6-12 months, however, and noticeable improvements. For me, these came naturally with time, including improvements with fatigue and the night flashes you described. Unfortunately, this is a complex disease and the only way we’ll all collectively find a way out is through research, which we’re busy organising currently.
There is a lot to be hopeful for, and a lot of it is right around the corner. Please take care of yourself as best you can.
Thanks for the support. Very glad to hear you have improved naturally with time. Research is certainly important, and the work that has been done so far is fantastic. Equally important unfortunately is PR. There’s so many studies that simply get ignored by powerful interests. (ie. There is ample high quality evidence that fluoridation of water has negative neurological effects, but the ADA has billions of dollars and a very firm grip on the FDA)
I actually think the best thing that could happen unfortunately is some well-known Zoomer influencer or other mainstream celebrity getting PFS. I mean, it undoubtedly has already happened. But the stigma of the symptoms and obscurity of PFS would likely cause them to not get in touch with this community. I think devising a way to reach out to find higher profile victims would be of great benefit.
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That will be a big part of the next phase of our organisational strategy: increasing PFS Network’s visibility. It is entirely likely with the proliferation of this drug through Keeps, Hims, etc that an influencer will get PFS one day.
We as a community need to change that stigma so they feel more comfortable coming forward when it happens. The six patient stories on our YouTube, and the further nine podcast episodes to be released soon, should help with that. Every patient can play their part.
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