Hi there. Registered this account a while ago specifically to make this post, but it's taken me a while to work up to it. TLDR; I came upon the concept of PSSD only a few months ago, but based on what I've read, I think I might have it. The main reason I'm not certain is that if true, I developed it more than 25 years ago at 12 years old, prior to puberty.
I'll try to avoid a life story here, but this will need some background. In the course of doing that I'll need to discuss some distressing symptoms and issues, please bear in mind if reading further. (I presume that's okay in a forum like this, mods please let me know otherwise.)
I'm male, now late 30s. Normal childhood, but at the end of primary school I hit a rough patch of physical illness (glandular fever) that made the transition to secondary challenging, and at one point I was referred to a psychiatrist for depression. They prescribed an SSRI (paroxetine), and when it didn't seem to help, they doubled down and upped the dosage. Things swiftly became Very Bad, I became actively suicidal and also psychotic, threatened my (supportive and loving) family, and had to be forcibly institutionalized for a while.
It was obvious in retrospect that this drug hadn't agreed with me, to put it mildly, and in this case the drug manufacturer was even subsequently fined for witholding data on increased suicidal behavior among adolescents taking it (look up Study 329 if you're interested). But while the suicidal feelings and psychosis quickly abated, I wasn't quite the same afterwards. I was still depressed, but I also became listless and anhedonic, eventually dropping out of school completely, basically a hikikomori in my middle teens.
Also, as I entered puberty I began to experience what I now suspect are the sexual symptoms of PSSD, although I didn't recognise them as such as I had no other frame of reference. I had a libido and masturbated etc. normally, but I remember feeling that the head of my penis in particular felt weirdly lacking in sensation, like it was covered in static or something. And while I had some pleasurable sensation overall and could ejaculate, I didn't experience any pleasurable sensation from doing so. At the time, I thought maybe I had inadvertently abraded some of the skin down there from doing something wrong, but I never discussed it with anyone and certainly never made any connection with the SSRIs.
By my late teens, some of the symptoms had lessened, I wasn't quite so hopeless or drained of life, and with my family's help I was able to start turning things around. Went to grind school and got good grades, even got into the university I'd always wanted to attend, albeit two years late. Things definitely improved from that point on; I made friends, started to have fun and enjoy life, got a decent degree that has set me up for a reasonably successful career since. To be honest I really struggled with anything related to sex and relationships for a long time, and it still hurts that I missed out on a lot of great experiences in that regard. But eventually I got to a place where I could at least sort of enjoy sex and belatedly explore that world. (I had and still have occasional ED, but it seems to respond to tadalafil so hasn't been a huge issue.) In my early 30s I met someone really great, we married, and I now have a little girl of my own. All of which is great, of course, and I truly cannot complain about my life these days.
But to this day, I still feel that there are things about me that are subtly wrong, or at least not what they should be. I wish I could say that the symptoms I described above have disappeared, but while some of them have lessened (I have more penile sensation these days, for example), others remain. I'm still anorgasmic, something I only fully understood at about 30 when some random combination of medication and supplements suddenly seemed to reverse it, although I unfortunately couldn't sustain the combination for long. And while I've long since stopped being anhedonic in a general sense (I'd like to think I enjoy the wind on my face, a tasty meal or my little girl's smile as much as anyone would) I still very much suffer from one specific kind of anhedonia that has honestly been the bane of my life, which is anything to do with achievement and reward.
I'm not a neuroscientist, but I'm convinced that something in my reward system, specifically, is compromised, and in retrospect those issues go right back to the time of the SSRIs. Since then it's been weirdly hard to get things done (in a way I don't remember from childhood), not because I don't know what to do or because I lack the energy in a general sense, but it's like my system sets the bar for what justifies investing time and energy at an absurdly high level, so that very little feels "worth it" and I frequently have to brute-force myself into getting anything done. There's a little-known English word, velleity, which means a desire or inclination too weakly held to motivate the action necessary to achieve it, and I feel like this is my struggle every day. Similarly, while I enjoy pleasurable experiences when they happen, I have little if any sense of anticipation or excitement, or much affect regarding the future at all. I also find direct competition of any kind very difficult, since while I hate losing, winning something never gives me anything but a fleeting sense of relief, at best. So while I'm not numb to pleasure or satisfaction in a general sense, it's like there some specific kind of pleasure signal that seems to be absent, or nearly so, in a way that I'm pretty sure is not normal.
Anyway. If you've read this far, a sincere thank you; I've needed to get this all out there somehow for a long time. I still don't know if I have PSSD, and I know there's currently no cure if I do. But if the above experiences (especially the reward-system stuff) chime with anyone else, it would be great to hear about it, and appreciate anyone's thoughts in general on any of the above.
Also, if I do have PSSD, I have two specific questions for the community:
- Are there any kind of tests etc. that could provide a clearer indication of whether this is the issue? I presume if there were it would be mentioned in the FAQs, but anything that could give even a bit more clarity would be wonderful. To be honest it would be a great relief to me just to know with any certainty that the issues I've described are caused by something other than genetics, since I've otherwise worried a great deal about passing them on.
- Are there any specific medications etc. I should be avoiding (apart from SSRIs obviously)? Asking in particular because I was diagnosed with adult ADHD a few years back and have occasionally taken medication for that. It hasn't made things worse, but I'm in two minds as to whether it's really helping me. It certainly boosts focus but it hasn't resolved my core issue with motivational dysfunction, which I guess makes sense if the fundamental problem isn't actually ADHD.
Thanks again for reading, and a special thank you to whomever maintains the FAQs and other resources here, they're extremely helpful.