Suffering PFS over 3 years

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?)
A: Google search

What is your current age, height, weight?
A: 28, 180cm (5’11"), 76kg (167 lbs)

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

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
A: 1mg/day in the first 3 months, then 1mg every other day for the rest of the time

What condition was being treated with the drug?
A: Hair loss (M shape)

For how long did you take the drug (weeks/months/years)?
A: About 11 months

How old were you, and WHEN (date) did you start the drug?
A: 24 years, March 2017

How old were you when you quit, and WHEN (date) did you quit?
A: 25 years, February 2016

How did you quit (cold turkey or taper off)?
A: Cold turkey

How long into your usage did you notice the onset of side effects?
A: Modest side effects past 6 months, full side effect (crash) after 11 months.

I’ll explain how it happened in detail at the end (See “Anything not listed in the above questions you’d like to share about your experience?”)

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.

Sexual
Loss of Libido / Sex Drive (I literally could live for months and maybe even a year if I tried without having sex or masturbating. Fortunately (?) for my ex, I broke up with her about two months before PFS happened… Some stupid doctors tried to link this to my PFS saying it was psychological, but I broke up with her in a nice way and going back to masturbation was still very pleasurable. Before PFS, I was just like any other healthy guy, just fucking horny all the time. If I had masturbated or had sex, I’d have to do it at least 2-3 times the same day, and didn’t have any problem doing sexual activity the next day.

Post-PFS, it is very difficult to get horny… I intentionally try by looking at porn with whatever fetish I used to find very attracted to. First few months after PFS, it was impossible to even get it up and almost impossible to even get to the ejaculation. I got gradually better but sex drive is still very low if I don’t try. If I ejaculate 1 time, then it is very likely I don’t feel any bothered to seek sexual activity for a week with no sexual thoughts at all… I also get turned off if I don’t “focus” on my penis during fapping… sad.)

Erectile Dysfunction (This was very serious in the first few months into PFS. I got much better in this aspect, but it’s still not hard and big enough. Since I never had sex after PFS happened, I don’t know if I can properly have an intercourse)
Complete Impotence (This was the case for the first 6 months with PFS. I wouldn’t label it “complete” anymore since my body gradually improved, but this impotence partially still lingers)

Loss of Morning Erections (One of the main reasons why I can’t start my morning happily. I just can’t help sighing when I know I don’t have any morning erection. Even if I get it, not to mention it happens super rarely, it’s very soft and not big enough and goes away very quickly, unlike pre-PFS how it made me stand before toilet bowl for tens of seconds because I couldn’t pee)
Loss of Spontaneous Erections (Doesn’t really happen. If it did, it’s very rare)
Loss of Nocturnal Erections (There are times when my penis get erections when I’m super tired and about to fall asleep. At least I got more nocturnal erections than morning or spontaneous ones. But still, it’s not on regular basis and in the beginning of PFS, even this wasn’t there)

Watery Ejaculate (Sometimes very watery, sometimes way too sticky. WTF… Another thing is it doesn’t smell as much as it did pre-PFS. The color is sometimes transparent, which makes me worried sick. Lately it’s better but still not 100% in this regard.)
Reduced Ejaculate (By a lot. Pre-PFS, I needed a shitload of toilet paper/tissue. Now It’s just miserable)
Inability or Difficulty to Ejaculate / Orgasm (First year with PFS, I did have inability to ejaculate. But now it’s more like premature ejaculation, my penis just unable to hold anything because it lacks strengths. Very weak orgasm and sometimes almost none at all)
Reduced Sperm Count / Motility (I did semen test, but it didn’t exactly tell me about the sperm count because I had a very low volume of ejaculation when I brought in the sample. Hopefully, it didn’t affect my fertility…

Mental
Emotional Blunting / Emotionally Flat (Emptiness throughout chest and abdomen, both physically and psychologically. I also find difficult to get excited about stuffs I used to like and get bored very easily - but it isn’t really about having difficulty focusing or concentrating, which is why I’m mentioning it here)
Difficulty Focusing / Concentrating (I didn’t put a check on this, but I think this is somewhat consequential: I can’t focus because I’m always concerned about my post-PFS state and wondering when I’ll recover)
Confusion
Memory Loss / Forgetfulness (This wasn’t really an issue in the beginning. But I started noticing this was a problem after almost reaching one year with PFS [Winter 2018]. It got much better around Winter 2019 which was about 2 years and 10 months post-PFS)
Stumbling over Words / Losing Train of Thought (Same with Memory Loss/Forgetfulness)
Slurring of Speech
Lack of Motivation / Feeling Passive / Complacency (not sure if it was directly due to PFS or consequential, but yeah, I was so excited back then to start year 2018 with lots of plans, which then all got crushed as I got PFS in February that same year)
Extreme Anxiety / Panic Attacks
Severe Depression / Melancholy
Suicidal Thoughts (Consequential to PFS. I try hard to keep positive mindset towards this issue that I’ll eventually overcome it and have my life back, but there are times when I just feel so powerless to do anything about it and wanna give up. It happens specially before going to bed contemplating about how PFS fucked my life so far)

Physical
Penile Tissue Changes (narrowing, shrinkage, wrinkled) - (This was the very first thing I noticed. With modest side effects while still taking Finasteride regularly, I didn’t notice any of this. But apart from it getting narrowed, shrunk and wrinkled, I also found that the color of my penis got lighter… My normal penis would have a much darker color than how it is now. I also noticed I got “stains” on my glans).

Penis curvature / rotation on axis (Penis literally has no strength of its own, which is why this happens)
Testicular Pain (One of the most fucked up things about PFS. When I used to take Fin regularly, I did have this pain only if I ejaculated within a few hours after taking a pill. Post-PFS, I get testicular pain, much more often from the left one than the right one, however very rare to get pain in both simulatenously. I usually experience testicular pain after ejaculating, I’d say 4 of out 10 times, I’d feel pain. The number used to be higher in the first year with PFS)

Testicular Shrinkage / Loss of Fullness (I think it’s my overall genital affected by PFS)

Genital numbness / sensitivity decrease (Also one of the first thing I noticed from the very beginning of PFS. I really haven’t had any improvement regarding this. The feeling of penis disconnected from your body and brain… It’s what makes me feel the worst. It’s not just genital that has sensitivity decrease. It’s the whole body. Even if it were not about sex, I feel less feedback from my body, such as when exercising.)
Weight Gain
Gynecomastia (male breasts)
Muscle Wastage
Muscle Weakness
Joint Pain
Dry / Dark Circles under eyes

Misc
Prostate pain (I wouldn’t say “pain”, but I do get pressure around my prostate area. I have no clue at all why that is so, neither do the doctors I’ve seen - I also went thru tests including test for prostatitis, but nothing at all)
Persistent Fatigue / Exhaustion (Tired easily)
Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
Increased hair loss (Been losing hair exponentially since PFS. Since it is one of the most visible changes due to PFS, it hurts a lot to see myself on the mirror, specially when I go to take shower and after shower with wet hair. There’s just no feeling of any volume, but frontal and general hair loss is in progress.

In my pitiful hopes to “maintain” my hair, I kept using Minoxidil, but Minoxidil didn’t have any effect on me anymore after PFS. I really wished I just used Minoxidil and never touched Finasteride if I can go back in time. And after reading this post Minoxidil induced PFS, I decided to just completely give up on using Minoxidil, not really because I think it contributed to my PFS because I’m very sure it’s solely on Finasteride, but in order to minimize any risk on my body’s recovery)

Frequent urination (Since I don’t feel strength in my penis, it feels like it can’t hold it as well as it did pre-PFS. It’s also the same when ejaculating. I find it more difficult slowing down the ejaculation than before.)
Lowered body temperature

Other (please explain)

  • Dandruff (This bothered me so much. I would be always afraid of wearing shirts in dark color because then it’d make dandruff all over my shoulder just too visible.)

  • Seborrheic dermatitis (I started noticing this about 4 months into PFS. My skin around hairline would all get red, scaly, and LOTS of Dandruff (Yes, I’m mentioning it again) from my head… Think this is also another reason that accelerated hair loss after PFS. Another areas of my body affected by SD were sides of the nose, eyebrows specially the left one, which also caused eyebrow hair loss… and ears both inside and outside areas. I don’t know exactly what happened but I got much better with this problem briefly around November 2019 - January 2020. And then I’d get heavy amount of dandruff starting March 2020… But I somehow got much better again since mid-June 2020, almost completely gone, which I hope never comes back…)

  • Oily upper body skin and Dry lower body skin (Not sure if this has to do with seborrheic dermatitis, but I’m still mentioning it)

  • Grey hair (It’s not a lot, but I do notice it and people who see me notice it as well. It’s one of the minor issues and I don’t see as many grey hair as I did until a year ago… Maybe they fell off due to hair loss or the color got restored… Who knows. Hopefully it’s the latter)

  • Less body hair count overall (armpit, pubic area, etc.) - (I wasn’t so bothered but lately it’s been on my mind. Fuck finasteride and PFS, honestly

  • Don’t catch cold (flu) - (I noticed many people on PropeciaHelp also didn’t catch cold very easily after PFS. If pre-PFS I caught cold about 2-3 times a year, now it’s very difficult to contract it and even if I did, it just goes away within a day without developing into any bothersome stage… I don’t care about getting sick a few times a year, so please just take back PFS…)

  • Less sleep hours and lower sleep quality (Pre-fin my normal sleep hours were about 10-11 hours, and if I were tired, I’d sleep 12 to 15 hours with no problem at all. Post-fin, even if I tried, I only get about 6 to 7 hours to sleep and unable to continue sleeping in after waking up. It doesn’t matter what I do the day before whether exercising or having a long, tiring day)

  • Pelvic/Groin area discomfort (I can feel this blood circulating around this area, but the thing is it puts pressure in my pelvic floor and groin area, specially at the root of my penis. The thing is I don’t feel like all this blood just gets into my penis at all, or maybe it does get into it but my penis just doesn’t respond due to PFS. No one knows, not even the doctors. I even suspected of hernia, but it just wasn’t the case).

  • Pee: Bad smell and color (I noticed this after a month PFS. It just smells awful when I pee, and this in change makes my penis smell bad as well. I drink a lot of water since I was young so I’d usually have the color of it between transparent and mild yellow color. After this happened, it either has lime color or very thick yellow or orange color. I also notice it smells the worst when I get this pee color)

  • Constant feeling of vomiting (I don’t know why. For about a year and a half I often felt like throwing up. It didn’t necessarily led to actual vomiting. I also felt very sick whenever I swallowed sliva from the back of my head. I don’t experience this much after 2 years. Hopefully it’s a sign that I’m recovering slowly…)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

  • Multivitamins (this is something I’ve been taking for years even before finasteride and don’t think it helped with PFS)

  • Probiotics+Prebiotics 20 Billion UFC (took for two months, then discontinued, then after four months started retaking it. It’s been about two months now and intend to continue taking, not really for PFS but for overall body health)

  • Wobenzym Plus (It’s only been a week since I started taking this. I recently saw a post here that Wobenzym helped so I’m just giving it a shot but so far I haven’t noticed anything yet. I’ll continue taking it for about 2-3 months to see if I see any changes before leaving it)

  • I took the following supplements for about 5-6 months, and did not experience any noticeable improvement or changes. Hence I stopped taking them after the said period:

  1. Maca 750mg
  2. Pygeum 100mg
  3. Leticine (sunflower) 1,200mg
  4. L-Arginine 1,000mg
  5. Ginseng (don’t remember the dosis or anything)
  • I also took Bupropion (150mg a day) for about 3 months when one of the psychiatrists I saw prescribed it to me. No effect at all and I stopped taking it in fear of having any undesired result in the future. After all, I lost a great deal of trust in doctors and modern medicine since PFS happened to me.

  • Before this COVID-19 happened, I went to gym regularly for about a year (whole 2019). The thing is, pre-PFS, my body would ache so much after some heavy exercising the day before. Now…, Post-PFS, my body recovery is way too fast and my body pain would be just gone so quickly, it sounds good but feels very wrong and it shouldn’t be. Fuck Finasteride again. I also noticed it was hard to gain muscles. I don’t really see it as muscle wastage or weakening. Anyways… Did going to gym make me feel healthier and lighter? Yes. Did it help with PFS? Not much in my experience. But still I intend to go back to gym once COVID situation is “somehow” and hopefully taken care. Hang in there, people.

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)?
A: I never had done blood test before taking Finasteride, so don’t know how my numbers looked before when I was “clean”. I did several blood tests only after this PFS happened, at least about 5 times over a period of 2 years. I took the test results to endocrinologist, urologist, neurologist, but all of them said they were in normal range. (You have no idea how many different doctors I went to see. Most of them deny the existence of PFS saying that it’s mostly psychological, or very few who do recognize it however with no solution in hand.)
In one of the test, I had very high Free Testosterone almost out of “good” range but I’m thinking it was because I had to ejaculate for semen sample an hour before the blood test. In other tests they were normal. In another test, I asked for DHT level test as well, and it was very high… Overall, there is no problem with my testosterone or any other hormones in specific.

Anything not listed in the above questions you’d like to share about your experience?
A: So this is how it started. I went on a business trip and forgot to take finasteride with me, so I didn’t take it for a week. After coming home, I took it for 2 days and started feeling very sick and noticed changes in my body specially my penis and sexual drive. I’m not sure if that 1-week pause from Finasteride disrupted my hormones in a way that it fucked them up…

After three month with PFS, I read a post (not from PropeciaHelp, don’t remember and can’t find where either) which told that this one guy crashed heavily with PFS then after about 8 months, this dude just gave up on his penis and sexual drive and started taking finasteride again for his hair. In about 2 months he “got” normal and he tapered off from Finasteride. There is no evidence if this is even true or he was just being delusional…

But I was willing to try anything to fix my body. So I took finasteride for about a week (May 2018) and stopped, and the next day I had full morning erection… Didn’t have much sexual drive but I also could achieve erection easily and even ejaculated twice the same day when I masturbated. Sadly, this weird miracle didn’t last long and after a few days it went back to PFS state. I tried this again in June (2018)(about 2 weeks period this time) but it didn’t work and no effect at all, so I threw away Finasteride completely and never touched it again. I don’t even know what happened in May and I’m not sure if taking finasteride really was the cause. FYI, apparently there are people who’ve done this too but didn’t see any of them saying it worked, if not mentioning that doing so made their conditions worse.

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
A: I explained mostly along the way… Sorry about poor legibility.
Conclusion: 3.5 years suffering PFS, about 60-70% recovered if I really did recover at all

2 Likes

Thank you for sharing ur experiences my friend. People like u really inspire me to go through this tough situation. U said u recovered 60-70% by now within 3 years !! Are u fine and able to function now? Would u say any particular suppliments worked for u, or is it just time? Recovering even 50% is a very good sign of hope. And please now don’t take any sort of topical or oral dht inhibitors ever again. It is just like injecting more and more poison to the body nothing else.

Not entirely sure what you mean by “able to function”, but apart from these sexual side effects that still linger, I’m just like any other person. In fact, brain fog was never really my biggest concern unlike for some other people. With regards to sexual side, it really depends a lot on the day. While none of it has been pre-PFS 100% or not even near 80-90%, I do feel more energetic than some other days and it is usually so in the morning. If I had more sexual activities at night pre-PFS, now I’m kinda forced to do it in the morning since after late afternoon or evening, I’m already too tired to do anything and it’s much harder to get turned on or get the level of erection that’d be sufficient to make the fapping enjoyable at the very least. It wasn’t the case pre-PFS tho. I could do it any time, no matter how tired I felt.

About the supplements, the ones I mentioned on the post are really all of them, and as described, none of them really worked to make a breakthrough in my battle against PFS. Maybe they helped very little which could be why I didn’t notice any difference, or simply they just didn’t work on me. Who knows… Currently, I’m just taking multivitamins, probiotics, and since about a week ago Wobenzym. Putting aside the first two, I’m gonna quit taking Wobenzym if I don’t see any changes after finishing the tablets I have, which would take about 2 months.