first of all, Im sorry is this is against the rules. I dont suffer from PFS or PSSD but Im aware of it and I dont doubt its existence, Im just a guy who is will be taking Clomipramine soon (TCA, but could also cause PSSD) and is a little bit worried. I have taken multiple SSRI without problems, but my OCD, depression and anxiety is so bad, I basically cant leave bed for months. Anyway, I would like to know if you think PSSD or PFS is more rare. Some studies say PFS prevalence is something like 1-2%. Lets say it would be the same for SSRIs. Approximately 200 000 000 people have been taken or take SSRIs. If 2% would get it there would be 2 million people worldwide suffering from PSSD. That somehow doesnt seem right, does it?
Anyway, what are your thoughts?
Hello. Yes, it is clearly stated that this forum is intended exclusively for those suffering persistent post-drug side effects and your membership will be revoked. If you do decide to proceed with treatment and develop persistent sides, you may make another account and be welcomed to participate in that unlikely scenario.
Just some things to consider:
A person experiencing sexual dysfunction may find it highly embarrassing to discuss these issues, preventing them from openly discussing them, even anonymously on a forum. A person may also not feel compelled to discuss post-drug symptoms because they see no benefit in doing so. I went years unable to break past the shame to talk to anyone outside of desperate and unanswered pleas for help from doctors.
A person must be skeptical of a prescribing physician (and often, regulatory agencies) refuting persistent side-effects before they will proceed to report or discuss those side-effects in relation to a drug they took. In addition, it is difficult, if not impossible, to convey persistency when working within the confines of adverse-event reporting systems.
Be aware that the 1-2% you cited refers to persistent sexual dysfunction and there is often more to these post-drug syndromes than sexual dysfunction. Severe emotional blunting/anhedonia comes to mind as something commonly discussed among PSSD patients and there is a breakdown of symptoms reported by participants of this site’s post-drug survey in our survey basics category.
If you scour the internet, you will find a far greater number of anecdotal accounts of PSSD than on this site.
My person opinion/experience is that these post-drug conditions are not as rare as one might be led to believe.
One of my ex gf’s once said that I and one other bf of hers were the only ones to suffer from ED. I took Accutane and later found out the other guy was also severely depressed/anhedonic and he also took Acutane. He would have been only 14 when he was dating her. This is in addition to two IRL acquaintances having other long-term complications after taking the drug, including one girl who vomited and shit blood for a year after Accutane, and someone I recently spoke with who said he was part of a clinical trial or off-label use of the drug for acne in the 70’s and suffered fatigue from hypothyroidism ever since and had the veins on his nose become very prominent around the time he took it.
Later on, a different ex explained that one of her friend’s SO had the same problems as me after taking an antidepressant. A coworker once told me he took prozac over a winter lay-off and when I explained PSSD to him, he said “things weren’t quite the same” for him since taking it. Take that to mean what you will. A classmate also admitted to having personal awareness of the issue when I made a comment about SSRIs having the potential to ruin sex. No indication of persistency from that conversation though.
I also clearly remember a former coworker having a breakdown after returning to work after a medical leave. Parts of the conversation included discussions with his workmate about filing a lawsuit, about his doctor not giving any warning that “this could be permanent”, and about not even being able to have sex with his wife. He was balding and I am making an assumption that this was all due to finasteride.
You will also find some stories of other guys on here talking about PFS to their acquaintances to find out some of them also had troubles.
Considering all of this, I feel it is more of a “hidden epidemic” than a rare condition.