13 years of PFS (first time speaking up)

[Pointblack]

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)?
Croatia

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 search, I knew about it for quite some time, but never did register, for lack of courage and because the mere mention of PFS made me depressed.

What is your current age, height, weight?
35, 187 cm, 80 kg

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.)?
1 mg/day

What condition was being treated with the drug?
Androgenic alopecia

For how long did you take the drug (weeks/months/years)?
3 weeks

How old were you, and WHEN (date) did you start the drug?
November 2008, 22 years old

How old were you when you quit, and WHEN (date) did you quit?
November 2008, 22 years old

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

How long into your usage did you notice the onset of side effects?
The first day. First morning after I took it (the afternoon before) I woke up without morning wood. I got scared but continued cause I thought my body needs time to adapt.

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

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

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

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] 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)
Dark veins popping out on penis shaft and scrotum.
Severe insomnia

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Various supplements.
l-carnitine, l-arginine, zinc, maca, ashwaganda and many more which I can’t remember - didn’t do nothing for me.
Tribulus terrestris - I’ve cycled it for about 2 months, 7 days tapering on and off, with 7 day pauses in between. After an initial boost that lasted for about a month - my erections got stronger and more consistent and frequent, morning erections returned - things started to get worse. After the 4th cycle new veins started popping out on penis and my erections got worse and so did my baseline, and it remained so even after discontinuation.
Cialis, viagra, levitra - I take daily cialis, sometimes skipping a day or two and even though it doesn’t help me much with regular, daily erections, I more often than not wake up with morning erections, even though they are at 70% of what they use to be. For daily erections, viagra works best for me, 50mg gives me strong erections and with stimulation, I can keep them even while standing (which is not the case with even 20mg of cialis). Levitra barely works. None of these drugs helped me in the long term.
Keto diet - I was on a strickt keto diet for 8 months but I had no improvement.

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)?
Since no doctor ever believed my story, least of all my personal doctor, I never did much tests. A urologist did a ultrasound scan and told me there’s no sign of fibrosis or other damage, but his check up was so hasty, I’m not sure I should believe his results. He prescribed me daily Cialis, so at least I got something. Besides that the only blood test he did was for testosterone and shbg:

No wonder I can’t sleep…

Anything not listed in the above questions you’d like to share about your experience?
No.

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

I started losing my hair in 2006/07. In november 2008 a urologist prescribed me propecia. I was warned about side effects, but it was said that they’ll stop after discontinuation. Anyway, the morning after the very first pill my morning erection wasn’t there, which was very rare for me. Forward 3 weeks, I noticed my scrotum got kinda smaller and more tender and dark veins popped out on it and on my shaft overnight. This scared the hell out of me so I decided to stop the drug. At the time I was engaged to be married in 7 months. I remember the first day after stopping - I had the biggest erection of my life, gave my ex multiple orgasms. The erection was so over the top hard I came out a bit of blood. After that, nothing was the same anymore. Things started to get progressively worse, both physicaly and mentally. This was a slow process. My ed and depression weren’t so drastic at the beginning. I got married eventually. After multiple crashes over a 2 year period, I was getting so distraught I seeked out psychiatric help. My wife an I couldn’t concieve and my anxiety and depression was getting out of hand. The docs diagnosed me with BPD and I was given SSRI-s (venlafaxine) and quetiapine for therapy. This made my sexual and psycholigical health even worse, so eventually, after 5 years, my wife left me. Things escalated from that point on. I tried to commit suicide with pills OD but survived, woke up intubated 3 days after in intensive care. This was approximately 7 years ago.
There’s not much to tell from that point until now. I quit all psych meds. Tried keto diet for 8 months with no improvement. I still have pfs, I’m still depressed, emotionaly unstable, suffer from severe insomnia and am actively suicidal.
That’s why I’m posting this. I don’t know how much I can take anymore. I’m on the verge of giving up and I want my story to be out there before I check out. I’m sorry I didn’t speak up before. I was a long time lurker on this site but never mustered up the courage to speak up.
Thank you for reading.

[M_C]

Hi @Pointblack , and welcome to the forum! This is a harrowing story - if there’s anyone who can understand what you’ve been through, it’s the people on this forum.

Please please do not “check out”. Even if life seems bleak right now, don’t trade away the chance to for it to have meaning again. World class scientists are on our case, and they’re finally looking in the right places.

Use this thread to keep us posted on how you’re doing - hopefully this is the start of something new and positive.

[Exsexgod]

You’re not alone! Good that you’re here. Don’t hide. Cry it out here, on reddit, comment the YouTube videos, even these of the hairloss treatment and Finasteride fanatics.
If you feel that science fiction feeling of living in a totally other world, one said on video podcast, you’re not alone. Laying in bed half a day, walking disconnected through the own hometown you’re not alone. So many others like me live in the otherworld.
This solidarity of the PFS damaged is the only thing I can give to you.

[Pointblack]

I edited my post - I forgot to put the test results in, I unchecked the box of “emotional blunting/emotionally flat” because although time has made me anhedonic and disinterested, I’m far from being emotionally flat. My emotions run wild and it’s hard to control them. I also put a trigger warning for suicidal thoughts - I wouldn’t want to bring anyone down with my dark thoughts and demotivate anyone from being hopeful and active in their recovery. I’m so sorry for being this negative. I just simply don’t know what to do anymore, I’m full of debilitating guilt and there’s no one I can turn to in third-world Croatia. I’ve thought about going to and endo, but I’m so tired of having my experience negated. There’s nothing worse than having your experiences marked as delusions…
Thank you @M_C and @Exsexgod for your kind thoughts and support. I’m fully aware of all the scientific research that is being done. As I’ve said, I’m a long time lurker on this site. I’ve also subscribed to the youtube channel a few days ago when I found out about it and as soon as my paycheck arrives I will most certainly donate to the pfs network. There is nothing more in this world that I want than this problem getting solved, for all of us.

[M_C]

@Pointblack

I’ve thought about going to and endo, but I’m so tired of having my experience negated. There’s nothing worse than having your experiences marked as delusions…

You’re probably right that a visit to a doctor could end up causing you more pain (and costing money too). But what about practitioners who don’t claim to cure, but just support you? Psychologists might not solve PFS, but they could potentially give you tools for coping (and deal with the guilt). Then there are personal trainers, physical therapists and massage professionals that could help you gain strength, relax, or improve in other ways.

[Wegotyou]

M_C is right about there being various strategies to reduce anxiety like psychologists and massage therapists. Not sure what resources you have where you live in Croatia. Sounds like it would help if you could find someone to talk to, even just a friend if you can’t find a mental health professional. There are online mental health therapists too if none are nearby. Might help to address the guilt you feel and other negative thoughts you have. I think most of us with PFS have guilt, dark thoughts, even suicidal thoughts. So feel free to be as open as you like or PM someone on the forum. Most everyone here is really supportive.

I’m glad you decided to speak out. Good to hear no damage was found to the penile tissue. I have ED similar to yours but haven’t seen a doctor. I can’t maintain, especially when standing, unless I use Viagra and constant manual stimulation. Doesn’t matter much because dating where I am is difficult so I’m usually single anyway. I haven’t had PFS as nearly as long as you but I have gotten used to it. But who knows how I’ll be years down the road. I’ve had depression and anxiety most of my life so I’m used to it but it’s probably not as severe as it is for people seriously contemplating suicide. Anyway, really hope you decide to stick around. Hopefully research makes some progress soon.

[Pointblack]

@M_C

But what about practitioners who don’t claim to cure, but just support you? Psychologists might not solve PFS, but they could potentially give you tools for coping (and deal with the guilt). Then there are personal trainers, physical therapists and massage professionals that could help you gain strength, relax, or improve in other ways.

@Wegotyou

M_Cv is right about there being various strategies to reduce anxiety like psychologists and massage therapists. Not sure what resources you have where you live in Croatia. Sounds like it would help if you could find someone to talk to, even just a friend if you can’t find a mental health professional. There are online mental health therapists too if none are nearby. Might help to address the guilt you feel and other negative thoughts you have.

After all the experiences I had with medical practitioners and even psychologist I can’t talk anymore. I feel like a mindless parrot, a circus freak. And now that I have that big BPD neon sign on top of my anamnesis, how much do you think anybody would take me seriously? All right, I’m sure there are emphatic people out there, but where the hell are they? As far as I know, no article about this issue has ever been published here and we are indeed a third-world country in treating psychiatric patient. Although I quit all psych meds and haven’t visited a psychiatrist in 4 years now, at which time I’ve been working, and I mean in spite of my poor physical strenght and condition and brutal brain fog, without a day of medical leave.
I won’t have anything to do with this branch of medicine ever again. No one will gaslight me anymore.
Why? Well, there’s the story of an asshole specialist of occupational medicine that tried to take my driver’s license and proclaim me unfit to work (I was a janitor at the time), first because of the medication I was on and 6 months later, after I gradually tapered off the medicine I was taking and had a writen confirmation of that fact, the issue became my actual diagnosis. It’s almost a miracle that I was able to keep the license (I lost the job). And I have to take a new evaluation every two years to keep it. Keep in mind, I am on no medicine, except alprazolam for insomnia that I gained once I stopped taking quetiapine, which I took originally to be able to sleep after PFS kicked in and my mind went to hell. I take alprazolam a few times a week for sleep, but only for that, only at bedtime. No other sleep remedy helps me and I’ve tried them all (melatonin, valeriana, zolpidem, etifoxine amd more). Only benzos.

Anyway, a lot more people would be without licenses if this was a real criteria. This particular doctor wanated to make my life miserable just for sport, I believe. I met him once again, at my new place of work (gas station) and I sold him a pack of cigarillos without even glancing at him. I wasn’t scared. What that was, really, was disgust.

Anyway, talk, talk, talk, talk with people who have no idea how surreal the experience of PFS is is no longer an option for me. I was punished for it, so many times, my conditioning is final. As Damon said in the podcast “If you have PFS you are on our own.”

And imagine having BPD on top of PFS. Never in a million years would a ignorant specialist think there is even a possibility that the foremost is the result of the latter instead of labeling you with another absurd, cop out diagnosis. Again, like Damon said: “It’s a stigmatized condition”. Now, imagine.having two of those. No way.

Damon continues “a lot of people think its psychosomatic, but it’s not”. Well, this absolutely angers me. Not you Damon. But the idiots who believe in mass delusion. What does that even mean? Mass delusion entails a deviation of behavior formed on some ideological concepts, not real physical changes. How can anyone erase that memory of mine? I took the pill, I went to sleep, and when I woke up my penis was dead. And I mean dead, wrinkled, numb, so much so that I’ve noticed it immidiately after opening my eyes. Having no morning erection was troublesome a bit, because I always, always had them and if I didn’t I could immidiately induce them in the half-dreaming before you come to consciousness. No. It felt strange. It didn’t feel normal. I had no sensation at all. I couldn’t induce anything.
Now, erase this memory from my brain.
Erase the memory of the shock at the 3-week mark. Dark, purple, tiny veins streaked all the way from my perineum to the bottom of the glans. Right testicle seems tender to the touch, like a sponge, and it hangs in an awkward position. Penis has wrinkles on it and it looks like it aged 50 years on its own overnight, like he’s ready for retirement and needs prescription glasses and a cane.
Erase the memory of violently and painfully cumming out a lot of blood the day after discontinuing the drag.
Erase the 13 years that has passed since then, a kafkian rollercoaster in which I lost everything even though I originally meant well.
Erase it and call me demented, but no more sceptical looks, thank you.

Friends are a double-edged sword when it comes to talking about it. The initial interest can easily turn to exaustion if the topic is pushed to far too frequently. At some point - there is nothing new to say and the only thing that stands out is self-pity. It gets tiresome. For both parties. I don’t want pity. Pity becames disgusting after it is demanded too often. This, or maybe I just don’t have good friends.

My family doesn’t believe me at all, except maybe my brother, I’m not entirely sure. Anyway, even he is disinterested (he tried what he could I guess).

We are on your own. This, for now, seems the only place to talk about it without preassure and risk of being disrespected.

Btw, I can’t edit the post now, nor read it, it is what it is. Big apology to the grammar gods. Call it stream of consciousness. Me sleepy (benzos, not a miracle).
Maybe tomorrow.

[LazarusRy]

I’m so sorry this has happened to you my friend. You tell your story so well jt pulls at my heart strings with every sentence resonating with myself. All you/we can do is hold out in the hope that with time the switches will be flicked back on or with the push for research a treatment is found. This is torture, but with every day that passes we get closer to brighter future. Trust in God too he has u in his arms it’s amazing that your still able to work when things are so severe. You have the fighting spirit Never give up.

[Scotsman]

I’m sure that there must be therapists etc. out there whom are aware of pfs, supportive and practice online and should take absolutely no heed of any erroneous medical history determined by those who are currently blind to what is actually happening to so many men out there.

[Pointblack]

Just wanna say hi to everybody.
Found this video today Video and I’m so glad with the perspective they took - not to prove that PFS exists, but that PFS deniers are wrong and borderline evil - that I kinda got all emphatic and thought of you all.

As far as for me, I’m in between jobs now, still very lonely, although I derived some kind of artificial peace from the solitude routine. Insomnia is still the biggest thorn in my side. Shit is so hardcore I often feel my mind will just break. I’m still on benzos for that and I’m starting to feel their side-effects now a bit. I still have GOAT-tier tolerance but my brain fog is getting worse, bit by perceivable bit. I sometimes have heart palpitations.
The future scares me af.

I won’t bum you out anymore. I just hope you are all holding up