When I get my emotions back, you bet your ass I'm going to appreciate life every day.

I'm confident I'll get better and you should too. I'm not gonna sit down and take it and neither should you. We all got each other, what are you waiting for?

Direct yourself somewhere productive. Reach out to a government representative, a journalist, fill out an adverse reaction report (yes it matters, we can't doom & gloom & pretend it doesn't). Something, anything, it all matters especially when you got hundreds doing it.

Get creative. No one asked me to keep track of all the stuff going on in the PSSD world and report on it, i just did it, I'm not special. Need help with something and no one has an answer? I hate AI too but it's damn helpful. People use glasses to see, wheelchairs to move. If you have a hard time thinking, there's no shame in using a tool to help you with tasks.

Thanks for coming to my tedtalk

I've been going through this hell for seven years. PSSD has ruined my life and in all that time I've never had a single window.

It seems like most people, even the long term sufferers, at least have a couple of windows. Is there anyone else out there like me who's had absolutely nothing in years?

I can't believe this is how my life turned out. I can't believe how unfair and unlucky it all is.

I’ve noticed that there seems to be no one speaking Turkish about PSSD, either here or anywhere else on the internet. But I know there are Turkish people suffering from this condition, too. If anyone who sees this post is Turkish and dealing with PSSD, please reach out to me.

Please see question above

I don't know if this update is appropriate, per rule 7.

Because I don't want people to go experiment themselves.

Still, I owe it to share the fact that for me, getting back on my ADHD meds (for which I have been officialy diagnosed by a multi pannel of doctors) has showed clear results.

I started taking them 16 days ago. Took them for 14 days.

• Almost immediate increase in erogenous sensation in my penis when masturbating. Day and night difference. Actually feeling good and pleasure for the first time in a year.
• Increased erogenous sensation in turn led to immediate increased erectyle quality.
• Orgasm quality improved a little bit (still low).

What I do have to say is, while I got diagnosed with ADHD in 2018 (way before getting pssd) and got the same meds, I quit them then because of the negative side effects they gave me.
These same negative side effects from the ADHD meds returned instantly also.

My appetite dropped like a brick. Dry mouth. Sweating increased.
The feeling of being on edge and stimulated also came back instantly.
I lost 4 pounds in 2 weeks.

I was also only taking them to try and treat this pssd. Which is not the goal nor the intent of taking ADHD meds. Which instantly made me feel like an abuser of these meds.

Also stimulant tolerance was real and very quick. I started with 10 mg slow release for the first days and then went to 20 mg slow release.
I felt like after barely a week I was about to need to go to 30mg. Which would have meant even stronger side effects. I also wonder how long 30 mg would have lasted and can't nor want to imagine the side effects at those dosages....

I haven't taken anything the last 2 days. I feel more calm, better in my skin. The sweats were terrible, appetite is coming back.

A valuable test for me, but not something that is a sustainable long-term solution....

Ciao ragazzi abbiamo creato un gruppo Whatsapp dove siamo 43 persone italiane, volevo chiedervi se vi andasse di entrare

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:

1. 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.
2. 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.

Its like body in full agony mode but brain completely numb to it

it's only me? even more some stuff seems make this pain worse but you can't understand what actually is and completely unaware

Hi, I followed the PSSD Network website and went to the South African website https://www.sahpra.org.za/

But I am unsure where I must report my case of post-SSRI sexual dysfunction along with the medDRA code. Can someone who has expertise/experience in this please assist me?
I’d greatly appreciate it, thanks!

TL;DR: Lifelong, no known drug trigger. Erections and normal touch sensation, but zero erogenous sensation and orgasms feel like nothing. Looking for similar cases and thoughts on a shared mechanism.

Hi everyone,

Unlike most people here, I don't have PSSD, PFS or post-Accutane syndrome (as far as I know). But I share some of your core symptoms: no sexual pleasure and no erogenous sensation at all. For me it's lifelong. My very first ejaculation already felt like nothing. To my knowledge I've never taken anything that could explain it.

What I have and don't have:
- Erections are easy and strong, from visuals, touch or just thoughts
- Genital touch feels normal (pressure, temperature, pain) but has zero erotic quality. It's like being touched on my arm
- No felt arousal, even with a full erection
- I do feel attraction to women
- Testosterone above average

I've gone through a lot of research. Part of this has a name in the sexual medicine guidelines ("primary anhedonic orgasm"), but very little is known about it and no medication has been shown to reliably help.

Asexual people experience the exact oppositie of what im experiencing: they are able to experience erogenous sensation , but dont have any sexual attraction towards anyone. This sub is the only place where I've found people describing the same experience. Even though I don't know what I'm missing, I understand how isolating it is when people either think it's all in your head or that there's an easy fix.

My working hypothesis (not a diagnosis):
The signals clearly reach my brain: I feel the touch, I notice the erection, I feel the ejaculation. What seems to be missing is the step where the brain attaches pleasure/reward to sexual input specifically.

Why I'm posting here:
The PSSD diagnostic criteria paper separates "somatic" genital numbness from loss of "erogenous" sensation, where genital touch feels like touching any other body part. The second one is exactly what I have. The same paper also proposes "post-SSRI asexuality" for people exposed before birth or as children, who would never have known anything different. I don't know yet whether my mother took anything during pregnancy; I'm going to ask. Or maybe it's simply something I was born with

Questions:

1. I don’t think this will be the case but does anyone have these symptoms lifelong, without a known drug trigger?
2. Has anyone developed this from something other than SSRIs/finasteride/isotretinoin (e.g. antihistamines, tramadol, antibiotics, antipsychotics)?
3. Does anyone know researchers or clinics looking into this?

Thanks for reading.

Hey folks,

Just wanted to post this for anyone searching the internet for hopeful stories of people recovering from pleasureless orgasm.

After taking Lexapro for a few months I basically lost all, or nearly all, pleasurable sensation when engaging in sexual activity.

I could still get and maintain an erection—no trouble there—but the sexual act (e.g., sex, masturbation, etc.) could be totally without or with only minimal sexual pleasure. My libido was also way down, naturally.

Whether this was caused by Lexapro, finasteride, pelvic floor hyper-tension or hypo-tension, nerve damage from cycling, something else, or a combination of the forgoing I’m not sure.

Eventually, I got in with a urologist who had done a fellowship in sexual health and actually knew and cared about this rather distressing condition. By that time, it had been two years.

His immediate suggestion was Wellbutrin. He cited studies showing that it sometimes improves or even reverses the loss of pleasure (these studies are indeed out there, though across the board such studies have found mixed results).

His theory is that the loss of pleasure is somehow associated with a reduction of dopamine, a down-regulation of dopamine receptors, or some other change in dopamine signaling that is caused by the increase in serotonin effected by SSRIs. Apparently its hard to study and pin down because getting readings of those things from live people’s brains is like impossible.

By this point, I had already tried: stretching / massaging recommend by a pelvic floor physical therapist; diaphramic breathing; kegels; reverse kegels; other types of strength training; various supplements; and a long break from cycling.

So, despite my hesitation to take another neurotransmitter-altering pharmaceutical product, I felt like I was out of other options and decided to give it a shot. I’m on Wellbutrin XL 150mg/daily.

Two months in, I can say with a high degree of confidence that the Wellbutrin is making a big difference. Pleasure during sex—and, crucially, during orgasm—is back. I’m more interested in sex, able to last a lot longer, and it feels pretty good to great to orgasm.

I wouldn’t say things are all the way back to baseline, but I’m thrilled to have significant improvement. Hopefully, things will keep getting better and the results will be durable. I’ll pop in to update in a few months.

One other thing I’ve been doing consistently is standing squats with a 30 - 60 lb dumbbell. Not sure whether that’s helping, but it has overlapped with the Wellbutrin, so could be.

Hope this helps.