Story by Michael
Syndrome since 2018
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 made a career of for a few years (make-up artist/photographer).
I had the opportunity to be surrounded by great people and to be able to express myself artistically through my photographs, with all the confidence of my models.
I was a very social and open-minded person. I was the kind of artist who would meet people in the evenings and host an after-party at home. I would take out my brushes and all my photography equipment at 3 o’clock in the morning and I would shoot my gorgeous guests making unforgettable memories and laughter in the process.
In my opinion, an artist’s soul is always accompanied by its torments. I have always been subject to anxiety and melancholy by nature. But it was a beautiful melancholy, a melancholy with whom I was friend, the kind of melancholy that inspired me and became the driving force of my art.
Unfortunately, my life took a completely unexpected turn.
In June 2018, I went to see my doctor with a relatively simple problem: I was starting to lose my hair slightly. Nothing alarming, just something that could concern me as a young man who has always taken care of his appearance. He told me about a medication called finasteride, which prevents hair loss for men. My doctor did not hesitate to prescribe me this medication. He had not warned me of any side effects at this point. I went to the pharmacy to take the medication and started the treatment on the same day (1mg per day). The 30 tablets were not covered by health insurance and costs about sixty Swiss francs.
After two months of treatment, I did not really notice any hair improvement. I came to the conclusion that at this price, it was probably not worth continuing and that my hair loss was not so dramatic.
In September 2018, I was about to go on vacation with friendss to Portugal, strangely enough, a very unpleasant feeling replaced the joy of leaving, a feeling of deep anxiety accompanied by strange physical sensations: muscle pain, an accelerated heartbeat, dizziness, brain fog. I did not understand what was happening to me. I went to Portugal anyway, which unfortunately was the last vacation I have been able to have so far.
I had just come back from my vacation, I was back to work, but my condition was not improving. Since then, day after day, I struggle with constant anxiety, insomnia, and violent physical pain that really hinder my daily life, both professional and private.
On October 8, 2018, I fell asleep as usual at around 10:30 pm. I woke up that night at 1:13 am in a total panic attack. I could not breathe, I could not think, I could not speak. My body was burning from head to toes. Something was very wrong, but I could not put my finger on it. Since that night, I have never slept normally again; I sleep about 4 to 5 hours a night at most. I will learn later that this is what we call a crash.
In February 2019, I was exhausted. I went back to see my doctor. I told him about my symptoms, and he put me on sick leave for burnout. To take better care of myself and have greater chances of regaining my autonomy and health as soon as possible, I decided to make an appointment with a psychiatrist. I started a once-a-week therapy. At this stage, my daily symptoms are; generalized anxiety, depression, insomnia, dizziness, muscular pain and weakness, depersonalization, derealization, difficulty concentrating, difficulty being surrounded by several people or following a conversation, loss of balance, visual problems, hyperacusis, loss of libido and sensitivity on the sexual part (especially on the testicles and the glans).
By chance, in March 2019, I stumbled upon an article about finasteride which calls for the greatest caution and announces irreversible side effects as cognitive impairments, depression, anxiety, sleep deprivation,and sexual dysfunctions for a certain percentage of people. How surprised/terrorized I felt while reading this article! All these symptoms had a name: the 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 the drug and are, for some of us, permanent damages.
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 benzodiazepine from time to time, to ensure a few good nights (I have also become dependent on Xanax, from which I am currently withdrawing myself, which is another battle besides my PFS condition).
I consulted a 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 for 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. The latter advised me to see an endocrinologist in Lyon, a specialist who believes in PFS and knows 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 a guilty one (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 pursuing 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 the 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 specify that having a French prescription in my country means that those treatments were entirely at my charge. I took this treatment for a few months, but nothing really changed since then. My next appointment is on January 13, 2021, and a new treatment will be considered (HCG hormonal therapy).
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 have a professional activity for 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 have been 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, incomprehension. I think acceptance is essential in this process, but it is tough to achieve. How can I accept to lose myself?
Luckily, I have found a community of other men worldwide who are victims the same way I am. We are all trying our hardest to fix 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 head and their sex. Some people, for unknown reasons, do not all have the same side effects. There are mainly three types of victims: those with sexual problems, those with mental problems, and those with both. For my part, I would say that it is mainly psychological distress – anxiety, fatigue, and a sore body. I feel like I 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, it is now 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 envelope of what I no longer am.
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 the drug more than 2 years ago, nothing improved and I can even tell that my general health is getting worst.
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 it up. So far, PFS is an “irreversible” condition. How is 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 after another, for now, it is the best thing to do. I used to be oversensitive, and now I feel like dysregulated most of the time. Sometimes I feel nothing at all, sometimes too much to handle. It is terrifying to realize how much I am disconnected from myself and the people around me. I witnessed how powerless my entourage is regarding the situation. It is one thing to be morally supported, but it is another to be alone facing it on a daily basis. People move on with their life, and I definitely cannot blame them for that.
The frustration to be stuck day after day in the same nightmare is rough. 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 vision of what life is really about today. I never in a million years imagined something like that could happen to me. What they say is true: you cannot do much without health. I took mine for granted, and it is part of my biggest regret as well.
You cannot tell how sick I am. I am still standing on my feet. I can walk, I can talk, I can eat, I can speak, I can breathe, I can laugh. From the outside, it looks like I can do anything. It is like being broken inside and being trapped in a different mind and body. How frustrating it is to even try to explain it. For some people, I have just lost my mind. For others, 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 some point. According to recent studies, the problem comes from a brain neurosteroids issue that leads to a chain disorder at the hormonal, cognitive, physical and emotional levels. 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 hope for a better future. I still manage to have some good times with friends and family when I feel like I can. To this day, I continue to put all my efforts into my photographs, which is therapeutic for me. It reminds me of the artist I used to be and that I probably still am but covered with symptoms that sometimes hinder my creativity and even the energy I can provide to create.
Other victims and I are not recognized as ones so far. We do not have any financial support, and some of us end up in dramatic situations. That 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 having taken this medicine.