Story by Rémy
Syndrome since 2008
I am currently 32 years old; I am having PFS since 2008. I have been taking the drug for one-year 5mg/day. After 12 years, I haven’t recovered from my symptoms.
The list of my symptoms that I experience are the following
• Loss of libido and sexual desire
• Erectile dysfunction; impotence
• Sexual anhedonia
• Significantly increased refractory period
• Decreased ejaculate volume and force
• Changes to seminal quality e.g. clear watery ejaculate
• Tinnitus, hearing loss
• Disrupted sleep/wake cycle
• Loss of deep sleep (fix temporarily by taking huge amount of magnesium)
• Clinical depression (eg. melancholic depression, suicidal ideation)
• Emotional blunting, flat affect
• Anhedonia; Loss of interests, excitement, pleasurable or rewarding feelings
• Loss of ambition, motivation
• Severe short- and long-term memory/recall impairment
• Slowed thought processes, fogginess
• Difficulty processing information and confusion
• Loss of verbal fluency
I have always had a really strong libido since my adolescence. I started to have my first sexual intercourse around 18. My orgasms were really intense, having sex was really a big part of my life by that time. But it lasted only 3 years.
At the age of 20 years old, I suddenly got an important fall of my hairs.
My life was still in its preamble but seeing those tons of hairs on my pillow every morning makes me feel extremely stressed and sad at the same time. I was thinking, “how could you find a life partner if you start your life being bold?” I looked at existing solution and fall on finasteride-based drugs as solution. One person in my friend circle was a pharmacist. He was taking a product called Propecia for himself and accepted to provide me that product under the counter.
My experience during the drug intake
After 2/3months of taking that drug, my former strong sex drive decreased weeks after weeks, so did my erection, my semen volume also reduced significantly and turned into water.
After 9 months, I was not able to have any erection anymore but I kept doing the treatment.
Arriving at 12 months of drug intake, something incredible happened, I went out, found a really beautiful woman. The kind of girls that you can’t not be excited with, coming straight out from my former fantasies. We went to the bed, and then, the terrible reality appears in front of my eyes, I was not able to have an erection at all. I couldn’t make love with that women.
The next day I stopped finasteride.
Following months after stopping the drugs
Around 3 months after stopping the drugs, my libido came actually back, my semen and my erection as well. For a period of about 6 months I was able again to have regular intercourse with women again. By that time, I thought that nightmare was a part of the past.
My life since then
Around 9 months after stopping the drug, my libido started to reduce again, so did my intercourses. I didn’t make the link with PFS syndrome by that time. I was thinking that human has high and down.
And then 2 years passed with no women’s land in my life, and absolutely no sex drive anymore whereas before PFS I couldn’t spend one day without masturbating. There was something wrong but I couldn’t point it out.
In 2012, when looking the information on French main channel (TF1) I saw an allocution to Post-Finasteride Syndrome and people who never got cured after stopping the drug. I suddenly made the link with myself and suddenly started to browse the web thinking that I would finally find a solution as other people were having the same issues.
What a disillusion when I realized that people were already having the syndrome for 10 years, trying complicated protocol that I couldn’t understand the logic behind, without being able to cure themselves. Even now most of them desperately are still trying to find a cure, some gave up on their former life, some other committed suicide.
I started to see different medical specialist: endocrinologic, psychologist, andrologist.
Most of them were unaware about the syndrome. As an example, one endocrinologist tested only my testosterone bio-available (hormone), and told me that if my level was in the range, I shouldn’t come visit him again. Yes, my level was low but still in the range. Looking at the whole documentation on the web, there are so many factors impacting libido, so reducing the whole thing to only one hormone was for me a proof of ignorance.
From psychologist point of view, everything is in my head, and sometime, time is necessary for healing. Well, now it has been already 11 years and I haven’t got any improvement on the libido side nor my brain fog.
Libido is something primitive, a component of life instinct. It comes naturally without specific reason.
Even though we could have period of depression in our life, there is nothing which could explains that a man lost completely his sex drive for a span of 10 years without improvement just because it doesn’t have interest in it anymore or didn’t find the love.
In other term, Propecia castrated me chemically, and I have been wandering like a eunuch without expressing any feeling in anything (love, passion, death) for the past 11 years.
Someone who lose beliefs in the future is someone already dead. As human is a specie naturally wired to hope, those having the syndrome but haven’t suicided yet still probably bear some hopes in the future, especially with the progress of medical science. We are unfortunately the first victim of an undiscovered path of medical science, and we must foster the creation of new studies to understand what is wrong in us before we die and didn’t get the chance to enjoy pleasures that life has to bring us.