Member "Almostcured" - 15 year recovery story

I wanted to write a post to go over my experience with PFS over the past 15 years. Mostly because I’m recovered and dont want people to lose hope or commit suicide over their seemingly hopeless situation. I dont believe this is a permanent condition.

I was 21 when I took propecia and I took it for 6 months. I quit due to the blurred vision, a brain zap, gyno, lack of libido and nightly head rushes I was getting. This was only the beginning as I would, over the next decade, experience most of the hallmark PFS symptoms. The most concerning were penile shrinkage, penile twisting, no morning wood, hard flaccid, desensitized penis and scrotum, ED, soft shrunken testicles, left testicle hung higher than normal and in front of my right, testicle movement, scrotum stopped hanging low, scrotum felt loose at time and restricting other times, watery semen, perineum spasms (mostly while taking public transportation). I had a few one-time things happen that were also concerning. My left testicle retracted once while masturbating and I had one episode of blood in my semen. The only symptom I cant say for sure has since recovered is the gynecomastia because I had it surgically corrected at 25. Though I do feel like my fat has redistributed back to a more masculine shape.I also grew intolerant to cold, and Im sure there are other symptoms Im forgetting but theyre easy compared to the sexual sides. I also have seborrheic dermatitis, which remains still. (ill take it!)

My recovery came quickly over the past year. Im currently 36. I tried many different protocols but ultimately I think a few things helped more than others and of course time plays a helpful role Im sure. Ill go over what I think helped and personal theories about the syndrome. Hopefully you guys wont go 15 years with symptoms but it doesnt seem to be too uncommon. I think some steps absolutely speed up recovery.

The number one thing that I think people should try is to avoid PMO. I think that I was predisposed to get PFS and I think it stemmed from a bad habit of watching too much pornography. Pre PFS, I never felt exactly normal. I would take care of myself frequently but I would never feel especially inclined to pursue females. I think that I was experiencing too much dopamine from porn and it made me insatiable and indifferent to actual sex. I always struggled with depression/anxiety too. I think that its not surprising that I lost my hair in my early 20s and I think that there is likely a correlation to early hairloss and excessive masturbation or pornography addiction. Its possible that I just had a lower baseline libido than most men, everyones different. I think this is why doctors say that PFS mostly affects younger guys though. A couple decades ago, men didnt even have access to the unlimited sexual stimuli that they have today, let alone access to this amount of porn during puberty. After reading up on how pornography affects the brain, its hard to deny the similarities in the reported symptoms. I think if many of the guys in nofap forums had taken propecia, they would almost certainly attribute their symptoms to fin. Thats not to say that propecia has a placebo affect. I think that it is just a catalyst for men who are predisposed and just pushes our endocrine systems too far.

My recovery was gradual but 80% of it happened in the past year. The big changes Ive made which I think sped things up were as follows:

I was experiencing tons of anxiety, which always seemed to stem from the gut. Probiotics seemed to have help this pretty quickly. I was taking 1 pill of prescript probiotics daily. I only went through 2 standard bottles.

I had always worked out regularly for the past 20 years. I took a couple months off last year from working out completely. I think it may have helped to reset my body. (really I have no idea. It could be totally coincidental but its possible).

When I had blood work done with Dr Goldstein last year, my numbers finally looked good but my vit D was pretty low. I added that to my supplements. Prior to that I had low normal rangeT. Now back to 730. Other supplements I was taking regularly included:

B complx
Fishoil
Magnesium
Zinc
vit C
Vit D
L arginine

Juice fasts always seemed to respark my sex drive. I would have surges of high libido for a couple days which would then crash but were always encouraging. I started to notice that my surges felt better than the last but the crashes always felt worse than the last also. For the past few years, I would experience new symptoms as old ones resolved. The very last symptom I experienced was atrophy and softening of the testicles, which lasted about a year before returning to 100%. In a panic, I scoured the internet for answers to why that was happening and the only other place I saw men experiencing this was in nofap forums. Its actually a good sign of recovery it appears. Its a fucking nightmare of a symptom though. In the homestretch, during my big surges, I would sometimes overdo it with M because my sensitivity was storming back and I felt normal again. I forgot how good things should feel, its been so long. This would almost always be followed by terrifying crashes but when I recovered, I always felt better than the last recovery.

Some other factors worth noting in my history that may or may not have had some impact one way or another were:

Had a hydrocele at 14/ hydrocelectomy at 19
epididymal cyst on left testicle
Masturbated all my life. Long before puberty
worked out 4-7x per week, since age 17
addicted to porn since college
never stopped looking at porn till last year. (hard to do and I still look at it but not nearly as often)
Ive always been a very anxious person and struggled with depression

Again, almost everything has improved. I just hav dermatitis sitll. No more hard flaccid, testicles feel and look 100%, penis is back to pre fin size, morning wood is back.

I know that 15 years seems like a lifetime but I think I neglected proper recovery methods for most of that time, mostly cause I had no way of knowing for sure what works. Im confident that I could have recovered years ago if I did things right. I never tried TRT or HCG, clomid or any of that and Im glad I let my body figure things out for itself. Still I think it should be encouraging to know that a 15 year sufferer can recover back to 100% after some of the worst symptoms.

I wanted to also add that during all this time, I became borderline suicidal 3 times. I even had my letters written out. To those of you who have struggled with this also, its totally normal to feel this way after suffering like we have. But moments of happiness kept me in the game and glimpses of recovery also helped a ton. Dont buy into the claims that this is a permanent condition. Its just a condition of which we dont fully understand yet. Even if it takes you 20 years of recovery, none of this will matter when you feel 100%. I feel like Ive been through hell and back and, mentally, I feel like I am made of steel now. What else could life throw at me that could even make a dent? I cant even handcraft a worse condition to suffer through. At any point I would have traded all my symptoms for cancer in a heartbeat.

Lastly, I created this post to offer some suggestions, encouragement and theories because Ive frequented this forum in the past and appreciated any posts that offered hope. Ive seen people in these threads get berated over their PFS theories and I think its pretty deplorable to shit on people who are trying to help solve a huge problem. So I wanted to be upfront and say that I dont plan on arguing with anyone who responds and I dont plan on sticking around long. Im looking forward to getting back to a regular life as Im sure most of you are. Best of luck.

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I think a lot of people will get a lot of hope from your message, so thank you enormously for sharing what you have. And huge congratulations to you! Delighted to read you’ve beaten this.

Would you mind staying around as long as you feel you can? Your further patience and advice might well help others.

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Youre welcome! I’ll try to tune in at least semi frequently, as long as I think its having a positive impact.

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i think thats rubbish. i always have done pmo without problems. and why did my problems started 14 days after quitting fin ? of course our symptoms are fin related

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have no doubt that pmo can cause problems when done too much. but its not causing neurological problems that i have now. like cant reading books anymore. thats a fin effect

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Honestly, some of you people are just are looking for excuses to stay negative and mad at the world. I even said that I think Propecia was a catalyst for men who are predisposed. Did you read that part? My problems were minor prior to fin. Of fucking course Fin led to all these issues. My argument is that EXCESSIVE PMO only makes matters worse and/or delays recovery. And its just a theory anyway. If you think its rubbish, thats fine with me. If Im wrong, thats also fine. If no body gives any credence to my post whatsoever,… also fine by me but it strikes me as foolish to ignore the suggestions of recovered people. Be my guest though.

Meanwhile, plenty of men get PIED who never took fin. I would argue that those men would certainly be more adversely affected by fin than most normal guys. Maybe they have a lower baseline T level. Who knows. I think them, like us, are predisposed. I mean practically 80% of the symptoms are identical and equally unexplainable. Are we really going to just sweep that fact under the rug so we can continue to put 100% of the blame on propecia? Seems wiser to be open minded. IDK.

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I also had vision problems. They also resolved. Everyones different but if these are reversible in a few, theres no reason to think that theyre absolutely permanent.

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i really hope they go away (vision problems) . i didnt want to sound offensive or attack you. but i totally blame propecia. i experienced the same as you with pmo by the way. thing is: i took 1 week breaks off every month the last 3 months i took it ( took it 2 years regularly every day) after these breaks and everytime i restarted i became worse and worse. so this drug is dangerous in starting/stopping. that means that this drug is way too dangerous to be selled for something cosmetic like hair loss. i think i wouldnt have big problems now if i would still take propecia . but the fact that going on/off or stopping the drug completely can crash your endocrine system is very alarming to me. so of course i blame merck ! its not a safe drug. everytime you stop you play russian roulette

Thank you so much for your post! Like others have mentioned, this is very encouraging! Personally, this couldn’t have popped up at a more perfect time.

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I dont know why you would continue to keep giving the drug a shot if its clearly causing problems. Youre certainly not going to recover if you keep taking it. Be done with it and give your body as much of a hard reset as you can.

YW. Why is it perfect timing for you, if you dont mind me asking?

i dont take it anymore since 10 months ! i meant that merck is to blame.

Merck is shit. But they could go up in flames and it wouldnt change your situation. Focus on the things you can control.

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how long did it take till your vision problems resolved ?

yeah thats right man

When I’m at my lowest which is increasingly more often due to the frequency of crashes and reduction in bearable days! Success stories like this give me a glimmer of hope. Very grateful

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Vision problems were one of my earliest symptoms. It happened on the drug if I remember correctly. I couldnt drive at night or focus on movie screens and reading was difficult, both from vision and brain fog. My eyesight seemed to resolve in 3 months after stopping the drug.

ah ok thank you man ! oh , 10 months stopped and still these problems :confused: hope they resolve one day , that i can study without problems

Honestly, I think crashes are our body’s way of trying to get back to equilibrium. The only thing I would suggest is that when you are crashing, dont test yourself by masturbating to make sure things are working properly. Im pretty damn sure that set us back a ways. I always fell into that trap. When I had a small improvement, I would test myself to see if I was legitimately improving. Just resign to the crashes and try to ignore them best you can. I think you will find that if you dont PMO, the next crash will diminish in severity. IMO

Not to downplay the time but 10 months is relatively nothing compared to many people. Give your body access to the things it needs to get better and be patient.

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