PFS Patient story #9
First, let me introduce myself. My name is Michael, I live in Switzerland, and I am 32 years old.
I have always been passionate about music, photography, and the world of beauty, which I pursued as a career for a few years as a make-up artist and photographer.
I had the opportunity to be surrounded by amazing people and to express myself artistically through my photographs, with the confidence of my models.
I was a very social and open-minded person. I would meet people in the evenings and host after-parties at my home. At 3 o’clock in the morning, I would take out my brushes and photography equipment and capture unforgettable memories and laughter of my beautiful guests.
In my opinion, an artist’s soul is often accompanied by torments. I have always been naturally inclined towards anxiety and melancholy. But it was a beautiful melancholy, a melancholy that inspired me and became the driving force behind my art.
Unfortunately, my life took an unexpected turn.
In June 2018, I visited my doctor with a relatively simple problem: slight hair loss. It wasn’t alarming, but as someone who has always taken care of my appearance, it concerned me. My doctor mentioned a medication called finasteride, which prevents hair loss in men. Without warning me about any potential side effects, he prescribed the medication. I obtained it from the pharmacy and started the treatment the same day (1mg per day). The 30 tablets were not covered by health insurance and cost about sixty Swiss francs.
After two months of treatment, I didn’t notice any significant improvement in my hair. Considering the price, I concluded that it wasn’t worth continuing, and my hair loss wasn’t as dramatic as I initially thought.
In September 2018, just before going on vacation with friends to Portugal, I experienced an unpleasant feeling. Deep anxiety accompanied by strange physical sensations like muscle pain, an accelerated heartbeat, dizziness, and brain fog replaced the joy of leaving. I couldn’t understand what was happening to me, but I went to Portugal anyway. Unfortunately, that was the last vacation I have been able to have so far.
Upon returning from vacation, I went back to work, but my condition didn’t improve. Since then, I have been struggling with constant anxiety, insomnia, and severe physical pain that significantly hinder my daily life, both professionally and privately.
On October 8, 2018, I fell asleep as usual around 10:30 pm, but I woke up at 1:13 am in a total panic attack. I couldn’t breathe, think, or speak. My body felt like it was burning from head to toe. Something was terribly wrong, but I couldn’t pinpoint it. Since that night, I have never slept normally again, getting only 4 to 5 hours of sleep per night at most. I later learned that this is known as a crash.
In February 2019, completely exhausted, I returned to my doctor. I described my symptoms, and he put me on sick leave for burnout. To take better care of myself and improve my chances of regaining my autonomy and health, I decided to see a psychiatrist and started therapy once a week. At this stage, my daily symptoms include generalized anxiety, depression, insomnia, dizziness, muscle pain and weakness, depersonalization, derealization, difficulty concentrating, difficulty in social situations or following conversations, loss of balance, visual problems, hypersensitivity to sound, loss of libido and sensitivity in sexual areas (especially the testicles and glans).
By chance, in March 2019, I stumbled upon an article about finasteride that calls for the greatest caution and announces irreversible side effects such as cognitive impairments, depression, anxiety, sleep deprivation, and sexual dysfunctions for a certain percentage of people. How surprised and terrorized I felt while reading this article! All these symptoms had a name: post-finasteride syndrome (PFS). Unfortunately, this syndrome is not officially recognized by healthcare professionals. The article mentioned that the side effects of the drug appear when you stop taking it and, for some of us, result in permanent damage.
I have spent months doing research, reading the testimonies of hundreds of men who have lived and are still living the same tragedy as me. What I am going through is very real, and it is quite unfortunate that the medical profession cannot help so far. Worst of all, neither my doctor nor my psychiatrist believes in my story and the permanent side effects of the drug. They are trying to convince me that I am mentally ill, that PFS is all in my head, which I never believed was true.
Despite everything, I continued my therapy with my psychiatrist, who offered me various medical treatments to calm my anxiety. I refused to take any antidepressants, which I believe would only make my situation worse. I agreed to take some benzodiazepines from time to time to ensure a few good nights (I have also become dependent on Xanax, from which I am currently withdrawing, which is another battle besides my PFS condition).
I consulted the first endocrinologist in November 2019. We did a series of tests that revealed different hormonal inconsistencies. At this point, I had no doubts anymore; finasteride is the cause of all my problems. That endocrinologist did not know much about PFS and how to properly help me.
In December 2019, after some research on the Internet, I found an association for finasteride victims in France. This association was created by a remarkable woman who unfortunately lost her 25-year-old son, who committed suicide because of the devastating effects of the drug. She advised me to see an endocrinologist in Lyon, a specialist who believes in PFS and is knowledgeable about that condition. I made an appointment to see him in June 2020 (a complete hormonal checkup is made for the appointment).
During my weekly appointment with my psychiatrist, I showed him the results of my hormonal mess and talked about my future appointment with the specialist in Lyon. He laughed at me and told me, “How does it feel to find someone to blame (finasteride) for all your misery? I do not believe in the persistent side effects of a medication. The only thing I believe in is therapy, and you are mentally ill.” This was the precise moment I realized that continuing therapy with him no longer made sense. After a year of consultation, I had not been taken seriously. That represents a loss of a lot of money and a loss of trust in medical assistance.
In June 2020, I finally had an appointment with the specialist in Lyon (by phone because of the Covid situation). He offered a treatment with a 100mg progesterone intake in the evening and a 50mg DHEA intake in the morning. I want to specify that having a French prescription in my country means that those treatments were entirely at my expense. I took this treatment for a few months, but nothing really changed since then.
Today, unfortunately, my condition is not improving despite all my efforts and the doctors I have seen so far (which, believe me, took a lot of energy from me). I am unable to engage in professional activity at the moment; after months of part-time work, I quickly realized that the stress generated by my work, even at a minimal rate, is too much for me to handle. I was laid off at the end of November 2020, and I have a pending application for a disability pension.
All this obviously generates different emotions: shame, anger, frustration, and incomprehension. I think acceptance is essential in this process, but it is tough to achieve. How can I accept losing myself?
Luckily, I have found a community of other men worldwide who are victims like me. We are all trying our hardest to improve ourselves with supplements, a strict diet, and exercises.
There are worse situations than mine. I can still have sex; I don’t have erectile dysfunction. Some men no longer have a connection between their mind and their sexuality. Some people, for unknown reasons, do not experience the same side effects. There are mainly three types of victims: those with sexual problems, those with mental problems, and those with both. In my case, it is mainly psychological distress — anxiety, fatigue, and aching body. I feel like I have aged 20 years in 2 years. My body has undergone some changes, especially my skin; it has become thinner on my body, and I have always had very oily facial skin, but now it is very dry and no longer produces sebum. My bones and joints hurt, but I still manage to go to the gym 3 to 4 times a week. On a superficial level, sometimes it’s hard to look at myself in the mirror. All I see is the fatigue under my eyes and the shell of what I used to be.
I feel like finasteride took a part of my soul, of my being. Some days, it feels like being alive with nothing vibrant left inside anymore. I am not the person I used to be; taking finasteride is my biggest regret so far. Since I stopped taking the drug more than 2 years ago, nothing has improved, and I can even tell that my general health is getting worse.
On an emotional level, it’s hard to handle this situation. Despite the desire to get better, it feels like a curse with no magical spell. It is kind of a constant battle with my mind to keep going. So far, PFS is an “irreversible” condition. How is it possible to find the meaning of life if there is no improvement ever? It leads to emotional distress and suicidal thoughts. I feel useless in my own life; I have lost relationships, my work, and myself. Thinking about the future is frightening because if I have to spend the rest of my life in this mental and physical condition, what is the point of still breathing? So, I take one day at a time; for now, it is the best thing to do. I used to be oversensitive, and now I feel dysregulated most of the time. Sometimes I feel nothing at all, sometimes it’s too much to handle. It is terrifying to realize how disconnected I am from myself and the people around me. I have witnessed how powerless my loved ones are regarding the situation. It is one thing to receive moral support, but it is another to face it alone on a daily basis. People move on with their lives, and I definitely cannot blame them for that.
The frustration of being stuck day after day in the same nightmare is tough. Also, I now understand other people; the ones who cannot fake a smile anymore, the ones whose distress is greater than some “superficial” daily life difficulties. I have a brand new perspective on what life is really about today. I never in a million years imagined something like this could happen to me. What they say is true: you cannot do much without good health. I took mine for granted, and it is one of my biggest regrets as well.
You cannot tell how sick I am just by looking at me. I am still standing on my feet. I can walk, talk, eat, speak, breathe, and laugh. From the outside, it looks like I can do anything. It is like being broken inside and trapped in a different mind and body. How frustrating it is to even try to explain it. Some people think I have just lost my mind. Others think I am just lazy. Today, it has become difficult to meet people and maintain friendly or loving relationships because of my general condition. My stress tolerance is low, and everything can sometimes become too hard to manage. Even answering a text message or a phone call and organizing my own thoughts is complicated at times. How are we supposed to solve this on our own?
I have found a new therapist who believes in my story, and we are working on coping strategies to keep me “alive” and hopeful for a better future. I still manage to have some good times with friends and family when I feel up to it. To this day, I continue to put all my efforts into my photography, which is therapeutic for me. It reminds me of the artist I used to be and that I probably still am, but I am now covered with symptoms that sometimes hinder my creativity and drain my energy.
Other victims and I are not officially recognized as such yet. We do not receive any financial support, and some of us end up in dire situations. This needs to change, and I want to warn any men who would consider taking finasteride. I would rather be bald and be in perfect physical and mental health today than have taken this medication.
