Finasteride Exterminated my Soul
Despite being quite a private person who does not enjoy divulging personal problems, especially those of an extremely intimate nature, I feel compelled to raise more awareness of the torture caused by a drug that is being casually and widely prescribed to innocent youths.
I’ll never forget the day I walked into the innocuous and seemingly professional doctor’s office in Seoul, South Korea in the autumn of 2021. Like millions of men around the globe, I had noticed my hair was thinning and wanted to do something about it. My life had been going well. I was in a very happy relationship with my beautiful loving girlfriend, I had just secured capital for my start-up from a credible and successful angel investor in Hong Kong, I was making progress with learning Korean and had a high quality of life that I had worked hard to achieve. I viewed keeping my hair as desirable and thought it would be wise to consult a fully credentialed specialist about possibilities. I knew that my grandfather had often spoken about the tendency in our family to bald before 30 and that he himself believed he had delayed the inevitable by taking vitamin B on a regular basis. I was vaguely familiar with the fact that there were options available to help keep one’s hair, had seen such products advertised, and thought I would talk to a healthcare professional about it rather than getting something over the counter. This was to be the worst decision of my entire life.
As I explained my hair loss to the doctor, he told me about the drug “finasteride” and how it would not only allow me to keep my hair but would also enable me to grow some back as well. I inquired about possible side effects only to be told that they were exceedingly rare, trivial, and would go away upon cessation of the drug. I was told I might notice a “slight drop in libido” but that most people “go looking for side effects when they think there will be side effects”. I then asked if such issues were mostly psychological in nature, to which he nodded. His response to my question will haunt me for the rest of my life given the nightmare that would follow.
I ended up taking the pills for 4 days thinking if I noticed anything abnormal, I would simply stop taking the drug and things would be fine. I had no idea that this seemingly innocuous decision would effectively amount to a spiritual death sentence and lead to more suffering than all other events in my life combined. On the 4th day of taking finasteride, I noticed some slight dizziness. I did the sensible thing and stopped taking the drug, assuming that I would just have to live with my hair loss and that I would continue with my happy life and put the issue behind me. Unfortunately, this drug is not so forgiving.
A few weeks after ceasing the drug, I began noticing a sharp pain in my genitals as well as a burning sensation. This pain felt like my testicles were being pierced with needles and subjected to a slow burning flame. What followed from this was a growing difficulty to concentrate and an inability to process information. Troubled by these bizarre issues, I assumed perhaps it was related to finasteride. After all, I lived a healthy lifestyle and had not taken any other medication, so it was inconceivable that anything else had caused this. After a few days of relentless pain in my genitals and a steady erosion of my cognition, I consulted with a urologist in Hong Kong who told me he had no knowledge of such side effects resulting from Finasteride, despite having prescribed the drug to other patients. Still having a modicum of faith left in the medical industry, I was put at ease by the claim that he thought I would return to normal.
Unfortunately, burning and stabbing pains in my genitals and an inability to concentrate were to be the first dominos in a steady cascade of symptoms which would strip my life of any joy or happiness. Approximately 5 weeks after stopping the drug, and a week after the first symptoms emerged, I was working with a friend of mine in a café when a severe burning sensation began spreading throughout my brain. I told my friend I would have to meet him some other time and I rushed to my parent’s home to discuss the pain I was going through. The burning became worse and was followed by electric zapping sensations and the feeling that veins in my brain were blocked. What followed from this was the deepest and darkest biochemically induced depression imaginable. Independent of the physical pain and cognitive dysfunction, this sensation could only be described as being stripped of every positive hormone in my body. It was as if someone had sucked all dopamine and serotonin from my body. Even taking a warm bath in the middle of winter provided none of the usual spontaneous feelings of pleasure.
Many in the Post Finasteride Syndrome community refer to this as the “crash”, in which the full array of horrific symptoms express themselves in full force overnight. Despite being in the loving embrace of my family, having a happy and rewarding relationship with my girlfriend, and being excited about the company I was building, it felt like every fiber of my being was being biochemically destroyed. The cognitive dysfunction was now also accompanied by songs playing on repeat, incessantly and loudly, in my head combined with sharp painful tinnitus and constant crackling and burning in my brain.
Desperate to make sense of this hell and to understand what was happening to my body, I consulted with a further 4 medical professionals. The next urologist I saw told me these symptoms were “impossible” and that “spontaneous changes to brain chemistry” were the culprit. He said that if a drug could cause such symptoms there would have been too many lawsuits to allow it to be sold to consumers. The endocrinologist I saw said he doubted just 4 pills could do this to someone. Over the following days my symptoms became so atrocious that in desperation I felt compelled to check myself into a hospital and consult with a neurologist. Unfortunately, lack of awareness, misinformation, or disbelief were pervasive, as is often the experience of PFS patients.
After having called numerous clinics, I was finally due to see a respected urologist in Hong Kong who acknowledged and understood the reality of “Post Finasteride Syndrome”. I remember being told by this doctor that “some unlucky men who take this drug develop permanent side effects and there’s nothing that can be done”. Hearing these words shattered my world as up until this point, despite the months of excruciating psychological and physical pain, I had held onto the hope that this torture would be temporary. Seeking any reassurance possible, I asked about research efforts to find a cure or viable therapeutics only to be calmly told: “no one is doing any large studies on this any time soon so it won’t likely be for another decade if ever”.
Before leaving the doctor’s office I asked to use the bathroom, only to notice that the key card advertised the very drug he had calmly told me has permanently destroyed the lives of thousands of innocent young men predominantly in their teens and 20s. I pointed this out to him and was met with laughter.
I had never contemplated suicide in my life up until that point but ending my life has now monopolized nearly every waking moment of my life. As the protagonist in one’s own life, it’s difficult to comprehend the reality of having one’s mind, body, soul and future fundamentally destroyed by a handful of prescription drugs described as safe by doctors. When I ingested those pills, I had no conceivable notion that I would be so crippled by anhedonia that I would hold my loving girlfriend and feel nothing. Much worse than the physical pain, chronic fatigue, and cognitive decline, living as a prisoner in one’s own body, incapable of enjoying sunsets, listening to music, or feeling any sense of excitement whatsoever is the kind of torture I could only have expected from science fiction. It is akin to having one’s emotions buried alive every single waking moment.
What has given me strength over the past 7 months of torture has been a resilient and determined community of fellow sufferers in their 20s, many unemployed and bedridden with debilitating and relentless side effects, who refuse to end up being collateral damage in Merck’s misanthropic quest for profit. The Post Finasteride Syndrome Network, led by two severely afflicted patients who have both suffered for a combined period of 12 years, have managed to secure the support of a team of top research scientists in Germany and Norway who will be building on the findings from Baylor College of Medicine which showed the dysregulation of 2,000 genes of patients. They believe this condition is reversible. Supporting these initiatives has helped give me enough will power to hold on for the time being.
If our community of disproportionately young patients are to have any hope of winning back our once happy and healthy lives the outside world must take interest in our suffering. Through scientific research, a cure is in reach. Sadly, debilitated young patients alone do not have the means to fund such research.
No one should be subjected to daily torture and agony for having trusted their doctor.
No one should be lobotomized, robbed of every positive emotion and passion, and crippled by incessant physical pain for taking a drug falsely marketed as safe.
Mothers should not have to visit the graves of sons in their 20s, who had no prior physical or psychological problems, due to the innocent desire to improve one’s looks.
A community of young suffering patients should not be ignored because the pharmaceutical and medical industry prefers to pursue profit at the cost of immense suffering inflicted on innocents.
Our community badly needs people to care about this issue. The PFS Network are doing excellent work, but despite our best efforts we cannot tackle this issue alone. Please consider donating to their research efforts:
https://www.pfsnetwork.org/donate
We have lost too many people to the horrors of this drug. Please do not be indifferent. Please help us to prevent the community from becoming any larger than it already is. And please help those of us who are already in it to find a way out.
Erik Livingston
erik.livingston@gmail.com
