Joining you all on this journey.

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)?
England

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?)
Through Reddit.

What is your current age, height, weight? Not too sure.

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.)?
1mg once, 0.25mg all other times.

What condition was being treated with the drug?
Hairloss.

For how long did you take the drug (weeks/months/years)?
2-3 weeks.

Date when you started the drug?
A couple months ago.

Date when you quit the drug?
A month ago.

Age when you quit?
19

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

How long into your usage did you notice the onset of side effects?
Immediately.

What side effects did you experience that have yet to resolve since discontinuation?
All of them!

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
Watery Ejaculate
[ x] Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
[ x] Reduced Sperm Count / Motility

Mental
[ x] Emotional Blunting / Emotionally Flat
[ x] Difficulty Focusing / Concentrating
[ x] Confusion
[ x] Memory Loss / Forgetfulness
[ x] Stumbling over Words / Losing Train of Thought
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
Testicular Pain
Testicular Shrinkage / Loss of Fullness
[ x] Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
[ x] Muscle Wastage
[ x] Muscle Weakness
[ x] Joint Pain
[ x] Dry / Dark Circles under eyes

Misc
Prostate pain
[ x] Persistent Fatigue / Exhaustion
[ x] Stomach Pains / Digestion Problems
[ x] Constipation / “Poo Pellets”
[ x] Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
Increased hair loss
[ x] Frequent urination
Lowered body temperature

Other (please explain) Constant head pressure and heavy head.

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Trying to eat healthy, tried exercising but my body is slowly giving up on the ability to perform exercise. Sleeping pills and have tried to avoid anti depressants.

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.

Hi all, have been reading this forum non stop for the past 3-4 weeks and thought it is about time I make an account instead of just being an observer. So it turns out I, like many of you, have destroyed my health for something as frivolous as hair. I had a few comments about my hair and suddenly became insecure about it. I became quite obsessed about it and started reading hair loss forums. The first thing that comes up on google about hair loss prevention is finasteride. I started researching it. As time went on I kept seeing ads about finasteride and finally gave in to it and asked my mum to buy some. She also thought it was a safe drug, and that if there were side affects I would just stop and be fine, bless her.

Looking back now I actually think I had many side affects whilst on the drug but chose to ignore the, Something just did not feel right. I was tired, a little dizzy and by the end became very anxious. It was because of this I decided to stop the drug. The next week was blissful, felt fantastic, and now I think about it I actually had extreme libido. I was masturbating like 4 times a day lmao.

But then, as many of you sadly know, the crash came. I think I have severe PFS. I was bed bound and felt like I was going through a stroke at first. At first my family thought I just had glandular fever, I had sores on my throat and was very tired. Then came the severe flu like symptoms, sweating, feeling cold, I even threw up. It was at this stage I knew something was wrong. Over that weekend I was pretty much bed bound, felt like a zombie and the terrible brain fog came. My cousin came round to my house and I just couldn’t emotionally connect to him. It was at this point I found the PFS network and my heart sank. the following week I tried to go to college but had to ask to leave as I just felt awful.

Now I am here. I wake up in a suicidal panic almost every morning, crying. The lack of deep sleep is a large reason for that. It takes me till the evening till I grow some semblance of acceptance and calm down. Mentally I am about 10% as sharp as I used to be. I used to be creative, sharp, intuitive, and wanted to learn, now that is all gone. There wasn’t a second of the day that went by when I wasn’t listening to music, now I just stare in to deep space. My life has become pure suffering. I miss joy, meaning and happiness.

Now I have to decide what the future will bring. I think about suicide hourly but I do not want to die. I think in the near future I will be doing a stint in the psyche ward. I have called myself monk as I could honestly see myself booking a one way flight to Thailand and joining a monastery. All the plans I had, have ceased. I know for a fact I would have made a strong impact on the world, now that is impossible. Lord help us all, god bless us and I hope and pray we have the strength to carry on.

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Hey there @Monk, welcome!

I think it would be wise to give yourself some more time, because we see a lot of new users come in and experience some improvements after a couple of months. If you quit about a month ago you are still relatively early into this and although the situation is awful, it might be possible you will still see a lot of improvements. So please stay faithful and let’s try not to assume the worst until it really proves itself to be so. I would say give it anywhere between 3 - 6 months, maybe even more.

However, improvements or recovery are no guarantee, as the existence of this forum and patient community will attest to. I wish I could provide you with some kind of safe first-line treatment but there is no such thing and we are still working towards research efforts into what exactly is causing the problem.

In any case, thanks for reaching out to us and sharing your member story with us. Please report your side effects to the relevant agencies in your country as well if you haven’t done so yet, it’s important that this situation is officially reported by all patients as much as possible. Take good care of yourself and try not to do anything rash or dangerous.

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Fucking awful what this drug can do, and even worse going through it at such an young age.

While I was young when I got PFS, at least I was in my 20’s.

As Wintermoon has said there’s no clear cut way to make it go away. My best tip is to not get to sedentary. Getting the blood moving is the only thing that could help clear my mind to some degree when I was at my worst.

Even though it might be hard to push yourself to even go for a walk, in my experience it’s very worth it. Only thing that has helped me with my sleep as well (had insomnia for well over a year).

Thank you, Wintermoon. Unfortunately with the fact that I had such a heavy crash I doubt there is much of a future in terms of health and vitality for me. But I take your advice and have been trying to remain healthy. Thank you for the sound advice.

Yes, I have been going out for walks and also feel being sedentary makes my mental health worse. I’m young yes but I have experienced a lot and can honestly say I’ve lived a good life. If this is it then so be it!

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It’s terrible to face anything like that, especially in your age. I know how it may seem like there’s no hope in the future and the thoughts keep spiralling around suicide. Please, don’t do anything stupid. I believe you still have enough power in your body for significant improvement if not full recovery. You need to focus on getting a proper sleep. Once I improved my sleep, I noticed how significantly decreased my anxiety. And I’m sure, it’ll help you too.
You need to be prepared for a period of struggle but you still have lots of time to achieve whatever you planned, believe me.

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Thank you. Have you improved? Let’s be realistic I think a full recovery is unlikely but I will be happy to get some symptom management. How did you Improve your sleep?

Well, there is significant improvement in some aspects. My condition has been changing through time. I’ve experienced some brief periods close to recovery. I believe I could live more-or-less normal life with further management of some systems.

My main advice is to bring your circadian rhytm in order. I used to have terrible sleeping problems and evening surges of anxiety. All these issues have drastically improved since I started following quite simple routine. Going to bed and getting up at approximately the same time, avoiding bright light in the evening, not eating late in the evening, and most importantly viewing sunlight after waking up (better till 10 am, it’s a very powerful and very natural mechanism of setting your biological clock).

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I had the same problems monk and a really bad crash as well. I’m close to 5 months in and feeling some solid improvement to mental health. Judt give it time there is no easy way out. Make sure to exercise, eat healthy, and get a good sleeping routine. Only 21.

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Hi capone. I have to say that the last few days I have had some solid improvement in mental health. I also do not have that persistent headache. Although I must say physically it seems I am getting slightly worse.

Sounds good. How are your other mental systems? How’s our anhedonia? Also, have your physical changes improved, it’s those which i fear are the most irreversible.

Hi all, I think I am out of the eye of the storm for now. This has brought benefits and negatives. The benefits are I no longer have that absolutely debilitating head pressure and brain fog. I literally couldn’t stand up properly. Also my sleep has vastly improved, I am taking sleep medication and have been getting many hours, I would like to see how I fair without medication though.

The negatives are now I can properly analyse what I have lost. The anhedonia is terrible and I just cannot connect to anything. I also physically feel very weak and emasculated. I am grateful that I am out the storm though. Can anyone tell me will this last? Do I sound like a severe case? Will I crash again and what can I do to guarantee I won’t? Thanks.

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There are many stories here from sufferers who felt better with time and learned to live an acceptable life.

And for many symptoms getting better over the months and years.

I’m the one here on the forum, who runs amok against the disease and his new life more than every other.
So it’s not a phrase if I tell you calm down, enjoy the little things, feel your family and never compare with all the others.
Like you call yourself a monk let the things pass by, don’t make you creazy about all.

The stress of regret, why I have done it to me, why I didn’t knock down the doctor, why didn’t realize the warnings make you insane like me all the time and life becomes a speed trip to inner hell.

Never compare with others Facebook posts, how wonderful life can be, carieres, jobs, families, relationships, journeys…that all hurts you only deep in your heart.

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damn bro, sorry to hear that, pretty much all the crashes look similar, i can’t wrap my head around what i have done to my health, take care, hope things get better for both of us

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I’d say it’s acceptable for now. I’m really glad I don’t have that crazy anxiety anymore and that my sleep is much better too(I used to have completely sleepless nights from time to time). I still have some troubles with concentration and motivation. But I’m working on it and thing really look manageable. I seem to have some anhedonia, but it’s more like a derivative from some emotional blunting, it’s not severe.
What’s worrying me is recently acquired head pressure feeling and the fact that I’ve almost forgotten how the real sexual arousal feels like.
Talking about physical changes… I’ve lost all extra weight I gained while I was on pills (15 kilos). I managed to bring back to normal my terrible dry skin. And I’ve made several ultrasound tests to check if there’s anything wrong with my genitals(they all appeared to be OK).

What changes are you afraid of?
I think I need to add that my problems come from PAS, not fin. But compared to some PFS cases my symptoms are pretty much the same.

That’s good advice. You also shouldn’t blame yourself. It’s not your fault, we were all lied to on a mass scale. We still have arms and legs and I believe we should focus more on what we do have now rather than what we have lost. It is very hard I know, but it will keep us sane.

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Yeah I was quite shocked yesterday I woke up at 11am, which was a massive improvement from when I was waking up at 3 in the morning. I am still persistently fatigued throughout the day though. I had terrible head pressure for the first month and am very happy that has subsided. It is still slightly there but not completely debilitating like it was. Now that has gone I have had time to notice how severely my libido is gone as well. That sense of male aggression is gone, it’s weird.

I am afraid of my physical symptoms getting worse and potentially having a negative affect on my health. I feel like i’m not ingesting my food properly and I don’t know what affect that is having on my health. I am also reticent to meet my friends again yet, I feel like I need some more time before that.

Thanks Capone. How’s your life now? Are you able to maintain friendships and work?

Sometimes I also feel like abandoning it all and I want to go live in the patagonia as an hermit, surrownded only by rocks and cattle.
But that’s escaping, it’s admitting i’ve been defeatd, it’s a ragequit. I’m more than that. Also, aside from turning ugly, I haven’t seen many cases where health is at risk because of this (but is that really a good thing?, I would prefer to have cancer rather than this).
Also, you probably shouldn’t stop your life because of this (unless you really feel you can’t), if your friends see you let down or something, just tell them that you now have health problems or that you have just been passing through some personal issues, you don’t need to go into any specifics, they will understand and if they are good friends, they will even try to support you a lot, which is helpful. Best wishes man, keep fighting.

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Would you really rather have cancer than this? I will take your advice and will eventually enter the real world again. Seeing my friends concerned for me helped me get out of the deep hole I have been in. What I am very sad about is that I don’t think I will be able to share fun with them like I did in the past. If anything, having this health scare has taught me how important and fragile life is, and makes me want to live it as much as possible. Keep fighting as well mate.