Started a course of (Ro)accutane when I was around 14 years old for moderate acne (Really didn't need to be prescribed it), can't recall the exact dosage but it was around 40-60mg for approximately 6 months I believe.
I have been suffering from persistent sexual dysfunction (loss of libido, loss of arousal/interest, loss of pleasure during sex and anorgasmia, loss of sensitivity) ever since (almost 11 years now). It almost certainly stunted my growth as I am the same height as when I started - around 5'6 (the same height as my mother which is very unusual for a male with a tall father). I now also have premature hair loss/balding and experience fairly regular bouts of depression and anxiety which go on and off depending on several factors (never experienced this before treatment). The sexual dysfunction and difficulties it poses obviously make a person far more prone to these sorts of conditions.
It's hard to tell because of how young I was when I took (Ro)accutane but I'm pretty sure its affected my personality (less expressive, caring and emotive). I'm also pretty sure I have anhedonia (struggle to get pleasure from things, clearly linked to sexual dysfunction aspects such as anorgasmia etc.), lack of drive/motivation. Memory and cognition may also be suffering but its hard to tell how linked these are to (Ro)accutane use.
Most of the symptoms have changed over time, I have had times when I've been very happy, fun, expressive like my old self but in honesty, this has usually coincided with drug use (particularly psychedelics) and being in very fun environments with close friends. Despite this, the sexual dysfunction has been an almost constant over the years with little noticeable improvement.
Despite having PAS, I still managed to do well academically, scoring very well in A-levels and managed to get a degree from a red brick university. I have also still managed to cultivate a great group of friends despite my shortcomings. So don't give up hope. However girlfriends and relationships have been and remain problematic.
Amazingly, it took me around 9 years to connect my symptoms with (Ro)accutane use. I expect there are far more PAS sufferers out there than we can imagine who are quietly suffering.
I hope to one day see a treatment/cure for this, I won't be satisfied with simply raising awareness and changing the labelling (though this is also very important). To me, this drug has robbed me of so much already and I'm aware it will likely continue to do so. I'm willing to do ample amounts of self-experimentation and if I ever manage to make or get hold of a significant amount of money, you can bet I will put the majority of it into fixing this. I refuse to simply accept this as my reality long term (I don't envision myself putting up with this for another 10 years). Up to this point, the community has lacked organisation but most importantly funding. The only way things will change is if we can garner sufficient funds to start a study and fund a treatment as is happening for PFS sufferers. Even if developing a cure is out of scope temporarily, a study may reveal that the cause is related to another condition such as PFS which would enable both communities to pull together to find a cure/fix.
I would bet there are as many people out there if not more, suffering from PAS than PFS given the prevalence of prescriptions. If the PFS community can fund studies, so can the PAS community. If anyone has any suggestions of how a non-profit fund trusted fund such as the RxISK prize could be set up which is dedicated to studying PAS, please let me know.
I have been suffering from persistent sexual dysfunction (loss of libido, loss of arousal/interest, loss of pleasure during sex and anorgasmia, loss of sensitivity) ever since (almost 11 years now). It almost certainly stunted my growth as I am the same height as when I started - around 5'6 (the same height as my mother which is very unusual for a male with a tall father). I now also have premature hair loss/balding and experience fairly regular bouts of depression and anxiety which go on and off depending on several factors (never experienced this before treatment). The sexual dysfunction and difficulties it poses obviously make a person far more prone to these sorts of conditions.
It's hard to tell because of how young I was when I took (Ro)accutane but I'm pretty sure its affected my personality (less expressive, caring and emotive). I'm also pretty sure I have anhedonia (struggle to get pleasure from things, clearly linked to sexual dysfunction aspects such as anorgasmia etc.), lack of drive/motivation. Memory and cognition may also be suffering but its hard to tell how linked these are to (Ro)accutane use.
Most of the symptoms have changed over time, I have had times when I've been very happy, fun, expressive like my old self but in honesty, this has usually coincided with drug use (particularly psychedelics) and being in very fun environments with close friends. Despite this, the sexual dysfunction has been an almost constant over the years with little noticeable improvement.
Despite having PAS, I still managed to do well academically, scoring very well in A-levels and managed to get a degree from a red brick university. I have also still managed to cultivate a great group of friends despite my shortcomings. So don't give up hope. However girlfriends and relationships have been and remain problematic.
Amazingly, it took me around 9 years to connect my symptoms with (Ro)accutane use. I expect there are far more PAS sufferers out there than we can imagine who are quietly suffering.
I hope to one day see a treatment/cure for this, I won't be satisfied with simply raising awareness and changing the labelling (though this is also very important). To me, this drug has robbed me of so much already and I'm aware it will likely continue to do so. I'm willing to do ample amounts of self-experimentation and if I ever manage to make or get hold of a significant amount of money, you can bet I will put the majority of it into fixing this. I refuse to simply accept this as my reality long term (I don't envision myself putting up with this for another 10 years). Up to this point, the community has lacked organisation but most importantly funding. The only way things will change is if we can garner sufficient funds to start a study and fund a treatment as is happening for PFS sufferers. Even if developing a cure is out of scope temporarily, a study may reveal that the cause is related to another condition such as PFS which would enable both communities to pull together to find a cure/fix.
I would bet there are as many people out there if not more, suffering from PAS than PFS given the prevalence of prescriptions. If the PFS community can fund studies, so can the PAS community. If anyone has any suggestions of how a non-profit fund trusted fund such as the RxISK prize could be set up which is dedicated to studying PAS, please let me know.
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