So here I am! Today, February 3rd marks my first year with PFS.
I’m not sure if anyone is gonna read my story of my first year in hell, but it gives me some kind of comfort to have this page to share these things with the only people that understand me how a young, healthy and ambitious man can get physically ,sexually and mentally totally destroyed within 4 days - as it was in my case with Propecia.
February 2020 – darkest days of my life
I will never forget that night. I woke up in the middle of my dreams with pain on my penis which I never had before. I touched it and i noticed it completely shriveled. It shriveled to pre-puberty size, like it was going to start to grow inside my body. And this happened after only 4th pill of Propecia by Merck. I knew I’m experiencing severe side and I found this forum, which scared the hell out of me that I have PFS. But I’ve also read you could naturally recover within the next 3 months, so you not necessarily have PFS.
But here is what happened next.
Obviously along the penile shrinkage I had complete ED, very reduced and watery ejacuation without pleasure, and it was even painful. My semen volume was about 1/10th of pre-fin. Then came the chronic testicular pain, which I guess happens if your testicles fail to produce testosterone. I developed serious anxiety and with it insomnia. I could not sleep more than 2-3 hours every night for about a months and a half, when I was awake during those long nights I was battling suicidal thoughts, stared down my balcony and thought about images how I die if I jump, because I have to.
Because of the severe fatigue and anxiety, I couldnt even eat almost anything. I felt like a final stage cancer patient I was so weak and felt so drained, especially when I noticed that suddenly my ever tight fitting cloths would start hang down on me. I rapidly lost all my muscle mass, within one month!!! I went from 80 kg down to 68 kg body weight (i was constant weight lifting since 15 year, had very lean and well structured body, felt so strong and vital) and gained stomach belly at the same time. I noticed that to hold my hand up would be challenging, I never in my life experienced my hands or legs being so weak.
March 2020 – Full blown PFS
My case is like, if I got the “crash” immediately after cessation of the drug, I did not even had to wait until my androgens returned to overexpressed receptors. Or the first 3-4 weeks were hypogonad symptoms and then came PFS in its place. Anyways, things started to change from this point, after 4-6 weeks my sleep started to normalize. My penis became a little bit sensitive again and I would be able to get erection again, but I noticed the penis became much lighter and ejacuation volume was still decreased and watery. I think the muscle loss didnt stop with arms and legs, but also the hardening tissue inside the penis has disappeared. It feels so light, both erect and flaccid. At this point my testicles started to shrink as well. I really remember to have them hang low and heavy, but since the shrinkage began the size of the complete scrotum has decreased around 40% I’m sure. Just like my penis, the balls feel empty and lifeless. After some months at least testicular ache has stopped and does not really appear anymore.
April-July 2020 – Anxiety and hopelessness
After 2 months of crash I started to develop almost constant anxiety, total depression and anhedonia. Nothing would make me feel happy, nothing entertained me, I was just down 7/24 like never before. I’m a salesman, and managed to establish my own company by the age of 33. I found investors for my company, today I’m employing 9 people, my company distributes a very premium industrial machine manufacturer. This is an outstanding achievement for my age, without any parental help or connection to influential people. I’m mentioning this so the community understands that I was always in my life a very open, ambitious ,happy and center-of-friendships type person. I loved going out with friends, I loved to date lot of women and traveled a lot around the world. I had no reason to be depressed nor anxious, I was really driven for life and it was so perfect that a moderate hair loss didnt fit into this perfect picture and thats why I let finasteride prescribed. So after 4 pills of Propecia by Merck, all this have changed. There are no words to describe how depressed I was, I suddenly didnt see a future and didnt want it, due to covid lockdown I was glad I didn‘t have to meet friends anymore, which suddenly felt like a duty. I was battling mentally to be able to look into the future with PFS, which at this point became obvious that I have it. I was a wreckage.
I was able to sleep enough again, yet I noticed I have a constant and severe fatigue. I could never feel rested, being tired all they long, no matter how much I slept before. Fatigue has become my biggest complaint, loss of libido, loss of my penile tissue, loss of muscle mass, these are nothing in comparison to how severely chronic fatigue effects my daily life, I lose all motivation to do things that I loved, it gives me a harder time to manage my company, it basically takes away the drive for life.
September-November 2020 – Accepting the condition
Around end of summer I started to stabilize mentally. Somehow I began to be able accepting things and get some hope that I can improve naturally in the long term. I started to weight lifting from end of august again, until the gyms closed due to covid in november. I felt some hope in the gym, because I was able to improve stamina and could excersize with constantly higher weights again, yet I have to add, I did not notice much of muscle gain.
After suffering from constant anxiety and severe depression caused by the complete loss of sexual function and physical decline by Propecia, I started to change in my mind. I did take the courage to accept things how they are, and probably will be for the rest of my life. There are no words to describe to healthy people how it is too see your shrunken and lifeless penis and balls every time you take a shower or go to toilet. You have to escape from a huge wave of depression and suicidal thouths, every time you see it. Always when I see and feel my muscles gone I would get very depressed about thinking how much more active and full of energy I was before all of this. I seemed youthful and strong, women would have guessed – just before my crash – that I was 25 years old when I was almost 34. Despite all of that, I started to be able somehow my mind to be immune to such thoughts. I started to manage my mind, like a self meditation, that this suddenly aged weak man that I am is the new normal and I shouldnt care about this.
December-February 2021 – Trying to get out of this disease
From around december I decided to do something about this disease.
My company is growing, despite the deeply depressed and challanging post finasteride months and the tough covid situation, I could manage my company to enable a stable growth. I feel like I can get the strenght to move on with my life and came to a point to do something about this disease. I have contacted an endocrine related autoimmune specialist which will work with me for 6 months to try to improve my sides. I dont know if he will be able to provide me any reasonable treatment, but at least I got an excellent automimmune specialist on board to deal with this syndrome. As he suggested, we will do androgen receptor gene test amongst many other.
Unfortunately due to covid i cant go to the gym since october. But when they reopen I will do everything to get regular excersize I could have done before finasteride happened and see how far I can get back physically.
I feel like I came a long way within this year. I have lost my sexual and physical capabilities I had, my character has changed in the deepest inside. I took finasteride to prevent androgenic alopecia, yet it triggered a massive AGA shedding. I think I belong to the more severe cases, since I got full blown PFS by only 4 pills, many here dont suffer testicular and penile shrinkage, or only one of those, while I suffered both. Along their loss of size, my penis and scrotum feels light and lifeless. But despite this, I made a massive progress, especially mentally since my crash today 1 year ago. I can move on in my life with what I have left, trying to accept that I may never have sex again, accepted that going up the stairs, lifting a bottle of soda or just simply walking will be never as physically easy as it once was. I try to accept all of these cause I kept my mind, i cleared from brain fog and I learned that I can control anxiety and severe depression by acceptance. I feel like mentally I’ve switched from suffering to trying to improve somehow in the long-term. I hope that my future holds something for me and thats why I survived this 1st year with PFS.