PSSD Post-SSRI sexual dysfunction

[roxy65]

Genital numbness / anesthesia

 

I have regained my ability to have a satisfying orgasm. It's not as intense as it used to be, but it's still very good. However my genitals, particularly my clitoris are still extremely numb.

Did anyone else's PSSD follow this course? It seems I've read that the numbness goes away first, followed by orgasm, but mine seems to following a different path. I still have windows and waves, good days and bad ones, but I can orgasm almost whenever I want to. It takes more pressure than it used to, but it happens fairly quickly (as it used to) and when it happens I feel it vaginally as well as that neurological rush. I don't have that feeling of afterglow that I used to have though, that relaxed, lustful feeling that used to come with it.

 

The thing I miss the most is kissing my boyfriend and feeling tingly down there or warmth in my clitoris region. Instead it feels entirely numb, even upon touch. I mean I can feel someone is touching me but I don't feel the intensity or pleasure. I don't get butterflies.

 

I'm hoping someone has experienced something similar to this and that it's improved for them.

 

I'm a year and 5 months out from Lexapro. It was a tiny dose for a short time ... what a big price I've paid.

 

Edited July 30, 2020 by ChessieCat
added topic title

[roxy65]

Can someone tell me why my posts always get moved to this topic and aren't allowed to be separate? No one sees them here, so I'm unable to get replies or support this way. Just wondering what the reason is. Thank you.

[ChessieCat]

SA is different to other web forums.  The staff keep similar subjects grouped into one topic which makes it easier for members to find.

 

PSSD is only one side effect/withdrawal effect of psychiatric drugs.  Therefore only one topic allocated for this.

[Auroragirl]

On 10/3/2019 at 5:49 AM, India said:

Hello all,

 

Although I still have a whole host of symptoms affecting my capacity to be a part of life I want to report on significant progress in respect to pssd. For at least 6-8 months after a basic ct from citalopram and a reinstatement in September 2018,   I felt completely numb down below. I couldn’t orgasm. I had a high sex drive before taking meds and a medium one on the meds. Eventually, in WD, I was able to orgasm but if the intensity of my orgasms on the meds were 7/10, this was 1/10. 

 

Fast forward; I was lucky enough to meet someone who was both romantic, sensual and compassionate to my situation . I consider it a sort of gift from the universe. He was working for 6 months here and hoping to play on the music scene before he had to return to europe to further his studies . I don’t have much interaction with people but it so happened  I went to his shop regularly  and we got talking. 

 

He is a beautiful soul and slowly we got intimate. lo and behold, I found my ability to feel sexually much increased. The intensity of my orgasms back to 7 or 8/10. He didnt put pressure on me but seemed to know my body well. I had multiple orgasms with him too, impossible before . 

 

i’m not sure how this progress happened but I think without me realising it I was slowly healing in that department. He also cooked for me and looked after me when I couldn’t get out of bed which gave me extra energy for recovery which I think helped this aspect also .

 

I hope sharing this will give hope. I think we all have different paths in terms of the time line of symptom recovery. Unfortunately, my cognitive/memory  blocks have not taken same trajectory but I should be grateful for this. 

Were you reinstated and back on the pills when you started to regain sexual function ? I didn't get these problems until I quit. I have since reinstated and am wondering if I can expect the sex problems to clear up eventually. 

[Naczoz]

Genital numbness - will it ever go away?

 

Hell,

 

I have PSSD and most frustrating is genital numbness and ed. Its been two years since i quit ssris and nothing changed. Im suicidal.

 

NO wave and windows patter - same symptoms all the time.

 

Edited August 31, 2020 by ChessieCat
added topic title

[Naczoz]

yes its permament. got the same for almost 2 years

 

PLEASE SEE:  Alto's response to Naczoz here

 

Edited September 18, 2020 by ChessieCat
added link to Alto's response

[ChessieCat]

On 7/7/2020 at 10:30 AM, gemini88 said:

Permanent side effects?

 

Question. I have been off risperdal (antipsychotic) since October last year but I still am unable to achieve an orgasm during sex. The only way I can is if I do it myself. Has anyone else experienced this? Is it a permanent problem?

 

 

Altostrata, this site's owner, had sexual difficulties after stopping Paxil.  These gradually resolved and are no longer causing any issues.  I tried to find the posts about this but they must be in a member's introduction topic which makes it difficult to find them.

 

I've done a search for PSSD in the Success forum of SA.  I suggest you check them out.

 

https://www.survivingantidepressants.org/search/?q=pssd&quick=1&type=forums_topic&nodes=28

[Altostrata]

On 9/2/2020 at 2:18 AM, Naczoz said:

yes its permament. got the same for almost 2 years

 

A duration of 2 years is not permanent. A lifetime is permanent.

 

Like post-acute withdrawal syndrome (PAWS), recovery from PSSD is very slow and gradual, over many months and possibly years. We have people here who have recovered from both after a very long time. I recovered from PSSD after about 4 years, though it took me 11 years to recover from PAWS. While absolute, PSSD was not my largest problem in those 11 years.

 

While it seems like an eternity, 2 years of PSSD or PAWS is not a very long time for either, I'm sorry to say. Nobody can tell the future. Brooding about it being permanent only adds to your misery and everyone else's when you catastrophize all over the site.

 

SurvivingAntidepressants.org is mainly about tapering and recovering from withdrawal syndrome. PSSD can be a post-discontinuation problem, that's why we have this topic here. But we cannot provide psychotherapeutic support for people who have a habit of undermining themselves by fixating on the worst possible outcome in an uncertain future. We don't have the training or the staff to do this.

 

You are agonizing unnecessarily about a future that has not yet arrived. Please seek psychotherapeutic assistance for this habit of mind. You might join the Yahoo group SSRIsex or pssdforum.org to talk with others about PSSD every day.

[Spruce30]

A few questions about your recovery if you don't mind Alto strata.

 

You mention on your most recent post, that you had PSSD for about 4 years, and after this, you seem to imply that your PSSD had completely recovered. Yet in previous posts, you have mentioned that some aspects of your PSSD, continued to linger on, until about the 9 year mark, and you state that your PSSD wasn't fully recovered, until about 9 years post Paxil.

 

Here is a link to this:

 

I myself have recovered from PSSD. After coming off Paxil in October 2004, among other withdrawal symptoms I had the absolute genital anesthesia, which lasted for perhaps a year. Very slowly, genital sensation came back.

 

Then I experienced perhaps 3 years of “ghost” orgasms, in which arousal is followed by what would have been an orgasm but instead, a non-event lacking sensation, and then a refractory period.

 

Following that, I had perhaps a 4-year phase of “ghost” orgasms with occasional weak orgasms, which gradually became stronger and more frequent.

 

At about 9 years post-Paxil, I was fully recovered from PSSD. As I was menopausal before I came off Paxil, my belief is younger people with full complements of sexual hormones will tend to recover faster. However, recovery from PSSD can be almost imperceptibly gradual, which can be masked or even impeded by the very understandable frustration, anger, and despair brought on by the condition.

 

 

I was just wondering if you could give me some clarity on this. Are you saying that some of your PSSD symptoms resolved after 4 years, but some symptoms of your PSSD: like the ghost and weak orgasms, lingered on until about 9 years post Paxil, and by 9 years they had completely resolved. Or are you saying that by 4 years, all of your PSSD symptoms had fully resolved?

 

Also you mention in your most recent post, that it took 11 years for your PAWS from Paxil to completely end. I just wanted to ask, if your PAWS went on for 11 years, and at about 11 years post Paxil, they have now completely resolved? Have your PAWS now completely resolved, and it took 11 years for them to completely end? Is this correct?

 

 

 

 

 

 

 

[ChessieCat]

9 hours ago, Spruce30 said:

Also you mention in your most recent post, that it took 11 years for your PAWS from Paxil to completely end. I just wanted to ask, if your PAWS went on for 11 years, and at about 11 years post Paxil, they have now completely resolved? Have your PAWS now completely resolved, and it took 11 years for them to completely end? Is this correct?

 

So as to stay on topic please ask this question in this topic.  protracted-withdrawal-or-paws-post-acute-withdrawal-syndrome-how-long-does-it-last

 

Also see:  about-altostrata-withdrawal-syndrome-since-2004

[Spruce30]

On 9/16/2020 at 7:08 PM, Altostrata said:

Like post-acute withdrawal syndrome (PAWS), recovery from PSSD is very slow and gradual, over many months and possibly years. We have people here who have recovered from both after a very long time. I recovered from PSSD after about 4 years, though it took me 11 years to recover from PAWS. While absolute, PSSD was not my largest problem in those 11 years.

 

Bump:

 

A few questions about your recovery if you don't mind Alto strata.

 

You mention on your most recent post, that you had PSSD for about 4 years, and after this, you seem to imply that your PSSD had completely recovered. Yet in previous posts, you have mentioned that some aspects of your PSSD, continued to linger on, until about the 9 year mark, and you state that your PSSD wasn't fully recovered, until about 9 years post Paxil.

 

Here is a link to this:

 

I myself have recovered from PSSD. After coming off Paxil in October 2004, among other withdrawal symptoms I had the absolute genital anesthesia, which lasted for perhaps a year. Very slowly, genital sensation came back.

 

Then I experienced perhaps 3 years of “ghost” orgasms, in which arousal is followed by what would have been an orgasm but instead, a non-event lacking sensation, and then a refractory period.

 

Following that, I had perhaps a 4-year phase of “ghost” orgasms with occasional weak orgasms, which gradually became stronger and more frequent.

 

At about 9 years post-Paxil, I was fully recovered from PSSD. As I was menopausal before I came off Paxil, my belief is younger people with full complements of sexual hormones will tend to recover faster. However, recovery from PSSD can be almost imperceptibly gradual, which can be masked or even impeded by the very understandable frustration, anger, and despair brought on by the condition.

 

 

I was just wondering if you could give me some clarity on this. Are you saying that some of your PSSD symptoms resolved after 4 years, but some symptoms of your PSSD: like the ghost and weak orgasms, lingered on until about 9 years post Paxil, and by 9 years they had completely resolved. Or are you saying that by 4 years, all of your PSSD symptoms had fully resolved?

 

[Roxane]

On 6/20/2011 at 4:27 AM, cinephile said:

Has anyone heard about inositol? I've read on other forums that some people with PSSD have had some success with it. Supposedly it helps resensitize 5ht-2 receptors (serotonin receptors) which are downregulated (desensitized) with SSRIs. In a crude analogy, it almost seems like a (partial) antidote to SSRIs.

 

I'm intensely interested in this as I currently suffer from bad emotional blunting and sexual sides from the f***ing Effexor I took nearly five years ago. Even getting off the Effexor almost four years ago (I was only on it for a year) hasn't helped remit my symptoms at all. I'm just hoping that getting off the Lexapro I'm currently on will help these symptoms as they are often nearly unbearable. They just make everything 1000x tougher than they need to be.

 

HOWEVER, my sex drive and anhedonia can occasionally remit, either spontaneously or by meditation or exercise. I'll never forget a few days last fall where for some reason, my symptoms completely remitted! I stepped outside a restaurant and the crisp breeze felt better than it had IN YEARS. And my sexual fantasies, genital sensitivity and libido were BACK. But it was all bittersweet as it only lasted a few days, and then it was all back to square zero. The only thing I can think of as to why that happened was I was exercising regularly (actually, the exercise was from moving into my new apartment and with all the heavy lifting of boxes and such).

 

Also, one time while exercising on the elliptical machine at the gym my penis became completely sensitized, so much so that I nearly had an orgasm! I actually had to get off the machine it was so intense! I honestly have never had that happen and it was just strange. To this day I don't know what happened.

 

I have also had one isolated incident of hypersexuality brought on by vigorous exercise where for a few days my sex drive was the highest it ever was, almost to the point where it was bothersome! I literally couldn't stop craving sex and my orgasms were overpoweringly good.

 

Also, meditation has sporadically induced similar awakenings of my old self. A couple of meditation sessions have brought about profound reversals of my emotional blunting and libido issues, but I honestly don't know why the vast majority of my meditation sessions don't have this effect. Usually they just bring about a slight calming feeling.

 

In addition to these incidents, my libido and emotions can spontaneously spring back, seemingly for no reason. This happens every 2-3 months and can last for either a day or up to five days.

 

So where the hell does this all leave me? Who knows. All I do know for sure is that 90% of the time I feel like a shell of my former self, and nothing works reliably to ease my symptoms. I'm just so incredibly angry and scared that PSSD is still not even remotely acknowledged by psychiatry. But I do know of people who recover and at least realize it's ridiculous to think my life is over at such a young age. It's just really tough some days.

 

Hello, this is Roxane at SA. I would like to someday publish PSSD experiences and other experiences from psychiatric drugs. If anyone is interested please PM me and I will provide my email address.

 

Edited October 5, 2020 by ChessieCat
removed email address

[Altostrata]

Spruce, I think it's obvious that my recovery from PSSD was gradual, becoming ever closer to normal over 9 years. As I'm menopausal, it's not like it was when I started Paxil about 20 years ago now.

[Spruce30]

On 10/5/2020 at 11:48 PM, Altostrata said:

Spruce, I think it's obvious that my recovery from PSSD was gradual, becoming ever closer to normal over 9 years. As I'm menopausal, it's not like it was when I started Paxil about 20 years ago now.

 

Ok, so are you saying you were still improving with the PSSD symptoms,  up until 9 years off? I.e. You felt your PSSD was still slowly improving past 4 years off, up until about the 9 year off mark?

 

 Also you mention in a recent post, that it took 11 years for your PAWS from Paxil to completely end. I just wanted to ask, if your PAWS went on for 11 years, and at about 11 years post Paxil, they have now completely resolved? Have your PAWS now completely resolved, and it took 11 years for them to completely end? Is this correct?

[Altostrata]

You know, Spruce, you don't suddenly snap back from any post-acute withdrawal symptoms. Like other symptoms, my recovery from PSSD was gradual. At about 4 years, genital anesthesia had dissipated and I had weak orgasms. I could have enjoyed a sexual relationship then, except I had much worse ongoing problems from PAWS. Sexual sensation improved over the next 5 years, as did other PAWS symptoms. Meanwhile, I kept getting older. At what point would you say I recovered from PSSD?

 

Please note that while I was recovering from PSSD, I did not have it in my head that it was permanent. I presumed it would change, like all my other PAWS symptoms.

 

If you look in the Introductions section for the PSSD tag, you will see a number of people who have recovered from that and from PGAD. It would be interesting to synthesize the arc of recovery from these cases.

[Spruce30]

On 10/7/2020 at 6:49 PM, Altostrata said:

At about 4 years, genital anesthesia had dissipated and I had weak orgasms. I could have enjoyed a sexual relationship then, except I had much worse ongoing problems from PAWS. Sexual sensation improved over the next 5 years, as did other PAWS symptoms.

 

When you say sexual sensation improved over the next 5 years, do you mean the 5 years following the initial 4 years you mentioned (where you say your genital anesthesia dissipated), i.e. 4 years, and then another 5 years, bringing it to a total of 9 years?

 

I wanted to ask you a question about my specific case of PSSD.

 

I have been off all prescription drugs for just over 5 years, and during these 5 years off, I have noticed some improvements in my PSSD, in the form of improved erection quality, and an overall  lessening of the genital anesthesia. Despite this, I still have almost zero libido, quite strong genital anesthesia, almost pleasure less orgasms, and quite strong emotional anesthesia.

 

In the last two years I have also developed needling type nerve pains in my genital area, regular tingling over my skin that goes in a wave like pattern across my skin, and slight rush type sensations in my testicles, all of which feels like my body trying to somehow reverse the PSSD. I also have windows about once every 2-3 months where the emotional anesthesia partially resolves, and I can feel emotions, especially when I listen to music. These windows in emotional anesthesia usually last between about 10- 30 minutes, but a few of the windows have gone on for a few days, but then they close again, and it is back to the emotional anesthesia.

 

Apart from the mild improvements I have mentioned, I have been quite disappointed with the progress so far, and while there have been some improvement in the erection quality, an overall lessening of the genital anesthesia, and occasional windows with the emotional anesthesia, in the area of orgasm, and libido, I have seen very little progress.

 

My question is, do you think it is possible to eventually make a full recovery from my PSSD, even though at 5 years out, the progress has been very slow,  and overall quite minimal? 

[Leo1983]

My answer would be yes it will gradually get better and could take many years for a full recovery.

 

From the explantion given to you, i am reading that it basically took Alto 9 years to recover and with each year that past there was grudual improvement, until her full recovery at year 9. 

[Altostrata]

When we say recovery is slow, what we mean is recovery is slow.

[Spruce30]

3 hours ago, Altostrata said:

When we say recovery is slow, what we mean is recovery is slow.

 

I would say it is more like extremely slow, than slow. Glacially slow would be a better way of describing it I feel. 

 

7 hours ago, Spruce30 said:

My question is, do you think it is possible to eventually make a full recovery from my PSSD, even though at 5 years out, the progress has been very slow,  and overall quite minimal? 

 

So what do you think Altostrata, in regards to my prospect of recovery from PSSD?

 

[Altostrata]

If I had the required powers of prediction, I'd be doing something else other than responding to that question.

[roxy65]

10 hours ago, Spruce30 said:

 

 

So what do you think Altostrata, in regards to my prospect of recovery from PSSD?

 

 

For what it's worth, Spruce30, I think there's a lot of hope for you. I'm about 1.5 years out myself, and I can relate to a lot of what you said. I probably took far less medication and for a shorter duration than you, so my recovery may be easier, but the fact that you feel those prickly sensations (I get them at times too and also have pretty severe anesthesia) sounds like a good sign to me. The fact that the genital anesthesia is lessening (mine is also but it's so slow) is also positive. I will tell you - the first thing to change for me was the emotional stuff. I'm almost back to how I was before emotionally. I cry listening to music and watching movies again. My pleasure/joy is still somewhat diminished, but that could be more situational, it's hard to say. Regardless, I don't feel emotionally numb anymore. Following that resolving, I have noticed an increase in my libido. My orgasms are enjoyable but not as much so as before. The anesthesia is probably most concerning for me.

 

Anyway, there seems to be a lot of bitterness on this forum in regards to PSSD. I get it. I think people get frustrated because PSSD sufferers can be repetitive, and we're just looking for a tiny strand of hope to cling onto. I also understand that this forum is geared towards withdrawal and the other side effects of that, but PSSD is a withdrawal issue, a long-lasting one, and it's heartbreaking, tortuous at times.

 

I think we all know that no one can predict anything for us and no one knows what the future holds, but giving people a little bit of insight or encouragement or hope doesn't hurt, even if they come back seeking more later. That's what support groups are for, in my opinion.

 

Anyway, Spruce, after reading a lot of success stories these past 1.5 years, I think you'll slowly recover. I really do.

[Altostrata]

I apologize, being asked unanswerable questions all the time is tiring to me. Of course I cannot predict when any individual might recover.

 

As explained many times before, if you've seen some improvement, it's likely you'll see more improvement if you don't do other things that might upset your nervous system, such as drink alcohol.

 

Recovery cannot happen soon enough for anyone.

[ccfb]

From everything I've read, PSSD does goes away on its own, with time.

 

Certain supplements may help AFTER you are off the medications.  But be extraordinarily careful with any supplements for PSSD while withdrawing.  They tend to alter hormones or neurotransmission.  This is the exact opposite of what you want in active withdrawal.  Exercise can also help.

 

Be patient.  You will heal.

 

 

[Breathdeep]

If I have ED still in the first few months after stopping ssri does that mean I have pssd or am I just healing v slow?

 

 

[Breathdeep]

In the first few months of stopped ssri does sexual dysfunction count as pssd or is it more likely to subside in the earlier days?

[manymoretodays]

Hi BD, @Breathdeep

I moved your questions to the appropriate topic.  Go ahead and read through the topic.

And then, please do start an Introduction topic, for yourself too, so that we may know more about you.  I believe I just sent you the warning/prompt really to do that.

 

Thankyou.  And Best.

mmt

[brianng85]

Hi everyone,

 

I was on SSRI for 20 days. From 12th/06/2020 to 02nd/07/2020.

 

16 fluoxetine pills+4 paroxetine pills. 01 pill every 02 days.

 

While on med, my libido was normal as I often tried to find chance to test with my partners, (because one of the med effects is to cure PE).

 

After quitting, during the next 5 months, I still had normal sex drives, (sometimes strong).

And suddenly, my libido was dropped in the end of the 5th month (11/2020). I didn't feel sex drive as before. I did not even have any sexual feeling with girls at that time. I lost feeling even I tried to stimulate my penis.

 

Then, middle of 12/2020, I force myself to masturbate (with porn). I got orgasm although erection is only 60% of normal. After that, few days later I had my sexual drive back. I had urges and erection back, although the urges was not as strong as before, but I would say at normal, I had sexual feeling with girls I like. I had sex 5 times within a month from late 12/2020 to late 01/2021.

 

Then from 25/01/2021, I was put on 10 days antihistamine (pills+nasal spray) for my sinusitis. From that point until today, I lose my sex drive again. I don't feel any urge or very little urge. I still have sexual feeling to the women I like but it is weak, not much.

 

1. Do you guys think PSSD could just start 05 months after quitting med? And would it come in waves like that? A month of getting better and it strikes again ?

 

2. Maybe I am depressed or it can be flatline period because I quit porn and masturbation (Nofap) sometimes since October/November 2020. It seems I have all similar the symptoms.

 

Thanks a lot everybody.

 

 

[manymoretodays]

Hi brianng85,

Yes, I think PSSD could start after the drugs.  And yes, we often do see WD(withdrawal) symptoms come in waves like that.  There is often a waves and windows pattern of stabilizing.

 

Might be best to read through the whole topic now brianng85, as I expect that you may find some of the answers that you seek.

 

And best, for your complete healing.  Sometimes, it can take a bit of time.

 

And best, L, P, H, and G,

mmt

[brianng85]

9 hours ago, manymoretodays said:

Hi brianng85,

Yes, I think PSSD could start after the drugs.  And yes, we often do see WD(withdrawal) symptoms come in waves like that.  There is often a waves and windows pattern of stabilizing.

 

Might be best to read through the whole topic now brianng85, as I expect that you may find some of the answers that you seek.

 

And best, for your complete healing.  Sometimes, it can take a bit of time.

 

And best, L, P, H, and G,

mmt

Thanks a lot for your reply.

 

So I did not have much sexual side effect while one med and after quitting med, and it could happen after 5 months ?

 

And Pssd could come in waves ?

[manymoretodays]

Hi brianng85,

And just clarifying here too, that PSSD, stands for post- SSRI- sexual disorder.

Meaning that it's onset IS after the drugs are discontinued.

 

And then I've got you started with your Introduction topic here

[anacleta]

Post-SSRI sexual dysfunction may present as persistence of sexual dysfunction caused by the treatment even after its discontinuation, which happens most of the time in the cases of PSSD, or occur only at the time of drug withdrawal.

[brianng85]

6 minutes ago, anacleta said:

Post-SSRI sexual dysfunction may present as persistence of sexual dysfunction caused by the treatment even after its discontinuation, which happens most of the time in the cases of PSSD, or occur only at the time of drug withdrawal.

Even you did not have symptoms while on med and after being off the med a few months ?

[anacleta]

32 minutes ago, brianng85 said:

Even you did not have symptoms while on med and after being off the med a few months ?

in my case the symptoms persisted and started at the beginning of treatment.

there are cases where the dysfunction only begins during the period of suspension or shortly thereafter.... "A few months" I don't know...I think there are already testimonials like yours.

pssdforum.org

[anacleta]

Some antidepressants can lead to permanent sexual dysfunction, and Pssd is a syndrome about which little is yet known - Jan 25, 2021 https://it.businessinsider.com/alcuni-antidepressivi-possono-portare-a-disfunzioni-sessuali-permanenti-e-la-pssd-e-una-sindrome-di-cui-si-sa-ancora-poco/

 

Also because of the pandemic, more and more people in Italy suffer from mental disorders such as depression. Many of these patients are treated with SSRI antidepressants: the acronym indicates a series of widespread molecules, at the base of well-known drugs such as, for example, Prozac and Seropram. Drugs that can lead, among the side effects, to disorders related to the sexual sphere. But for some years now, several patients have detected problems of this kind even long after they have stopped taking these drugs: this condition is known as Pssd, Post-SSRI Sexual Dysfunction, an iatrogenic syndrome (i.e. caused by a medicine) with serious repercussions on the quality of life, especially for younger people.

 

"Technically, these drugs are called SSRIs, an acronym that stands for 'selective serotonin reuptake inhibitors,' and are used in the treatment of a range of mental disorders, such as depression but also panic attacks or anxiety syndromes," Dr. Angelo Barbato, psychiatrist and researcher at the Research Unit for Quality of Care in Mental Health, part of the Department of Neuroscience at the Mario Negri Institute for Pharmacological Research, explains to Business Insider Italia. "The use of these drugs has increased a lot in recent years: in Italy in the last 15 years it has doubled, and the latest data collected say that every day 2.5 million compatriots take these drugs."

 

Some of them have developed sexual dysfunction after ending treatment. "The problem is just that. In fact, it is known that while taking these drugs can give problems such as difficulty in erection and reduced libido. 60-70% of those who take these drugs develop these side effects, which are dose-dependent and tend not to be persistent. This was already known. Now it has emerged that there are disorders of this type even in those who have stopped the treatment, with symptoms a bit more complex such as reduced sensitivity of the genital area, reduced ability to feel pleasure or anhedonic orgasms, that is achieved without feeling pleasure," Barbato says.

 

What revealed the existence of the syndrome were "the spontaneous statements of people who took the drugs and then reported these problems," the researcher recalls. "At some point, these reports were brought to the attention of researchers and psychiatrists, who collected a case history and in 2018 submitted a dossier to the drug control agencies (the Food and Drug Administration in the US and the Ema in Europe, ed.) asking that these side effects be included in the leaflet that illustrates the characteristics of the product." As far as Europe is concerned, "the EMEA carried out a preliminary investigation and subsequently gave indications to the countries to include this type of information in the package leaflet. This happened a year ago and Aifa, the Italian drug agency, has acquired the Ema's recommendation: so people who take these drugs should be informed of this risk by the doctors who prescribe them", Barbato says.

 

The syndrome still has several obscure aspects. "It is known that this effect occurs but our information stops there. We don't know in how many cases it occurs, we don't know if it regresses or not, we don't know what other factors may aggravate or reduce the risks of these drugs, and because SSRIs are many we don't know if there are some that give this problem and others that don't," summarizes the researcher. "I am part of a research group that looks at studies of psychotropic drugs, their efficacy, safety, and risks. Then there is a collateral group that deals with studying the mechanisms through which drugs manifest their effects, both beneficial and adverse. We also verify the prescriptive appropriateness, that is, how much the drugs really serve or are used inappropriately. This problem is widespread because the use of these drugs is growing."

 

According to Barbato, "the pandemic has worsened the mental health status of the population and there is a tendency for doctors to prescribe drugs of this type indiscriminately. Ninety-five percent of all prescribed antidepressants fall into the SSRI category and are overused: not all depressions respond to drugs, but psychological treatments are not widespread and many people resort to drugs, with limited benefits and a high risk of adverse events. Eighty percent of people with depression are prescribed such a medication, and of these we estimate that barely 20% have any real benefit. We therefore believe that an information process involving the doctors concerned is necessary: only a few days ago we had a meeting on the subject at the Ministry of Health."

 

The research project of which Dr. Barbato is a part has several goals. "In particular we want to: a) find out if prescribers are aware of this problem and if patients are informed about it: users have the impression that doctors, and especially psychiatrists, are not well aware of the situation and we want to do a survey among psychiatrists to make this verification b) study how many people have reported these effects after taking drugs and how they occur, what is the duration, which drugs are more at risk c) study what mechanisms of the central and peripheral nervous system determine these effects".

 

To bring to light the Pssd were the stories of those who suffer from it, like Laura (fictional name), who for 7 years is living with this problem. "In Italy, we have a chat group with which we keep in touch, as well as a website and other spaces on social networks where we discuss symptoms and any treatments tried; we keep up to date on the progress in recognition and scientific research and we also organize fundraisers to contribute to research." In the PSSD community, the young woman reveals, "there is honestly a lot of despair, these are really difficult conditions to accept and endure because they deprive you of fundamental components that outlined your personality and what you took for granted to be part of your human being. The package inserts recently have been updated with a brief warning and this can help people weigh the pros and cons a little better when prescribing." The problem remains for those already suffering from this syndrome. "We urgently need to get more attention from the medical and scientific world.  If the answer to PSSD could be found, both in the sense of understanding its etiology and in the sense of finding a cure, these drugs, which are so prevalent, could be used by everyone in a safer and more informed way."

 

 

New Evidence on Post-SSRI Sexual Dysfunction (PSSD) - Feb 20, 2021 http://www.laltramedicina.it/notizie/nuove-evidenze-sulla-disfunzione-sessuale-post-ssri-pssd/ 

 

SSRI antidepressants, selective serotonin reuptake inhibitors, and SNRIs, selective serotonin and norepinephrine reuptake inhibitors, comprising numerous active ingredients, are the most widely used classes of psychotropic drugs today; not only are they the drugs of first choice for mood disorders such as major depression, but they are also prescribed for a variety of other disorders, such as anxiety, panic attacks, eating disorders, sleep disorders, in pain therapy, in some forms of headache and even as a treatment against premature ejaculation. Sexual side effects caused by these molecules are really very common: post-marketing studies report a prevalence that exceeds 50% among patients who use them; among the most common symptoms we remember the decrease in libido and the difficulty in reaching orgasm or anorgasmia.

 

In addition to these side effects, which were assumed to be reversible upon discontinuation of treatment, a new evidence has emerged from the reports of patients and has made its way into the medical literature, starting from the first case reports dating back to 2006, which describe cases in which, after having made a "regular" use of these drugs and discontinued them, patients have not had any remission of sexual symptoms and indeed, in some cases those symptoms have appeared or worsened at the time of suspension.

 

Disappearance or reduction of erogenous sensation and sometimes tactile sensation in the genital area, arousal and erection, and anhedonic orgasm, i.e., mechanical and without pleasure, and other orgasmic disturbances, are some of the most common symptoms of post-SSRI sexual dysfunction (PSSD), a persistent syndrome affecting a subgroup of patients who have used serotonergic drugs; those who remain affected emphasize that, prior to such treatment, they had never experienced such symptomatology. A difficult condition to sustain, psychically traumatic and painful that, in males and females, even very young ones, jeopardizes their identity, what were their expectations and desires, of which sexuality and what revolves around it were naturally an integral part, as well as sentimental relationships that come to terms with something unexpected. Those who suffer from PSSD often compare it to a horrifying "permanent chemical castration", which they were never warned about before treatment, and which many physicians to whom they turn for help easily do not recognize the possibility, leaving the patient with "in addition to the damage, the mockery" and for which, worst of all, no cure is known today. The voices of patients and the commitment and courage of some specialists who have taken the problem to heart led the European Medicines Agency (EMA) in 2019 to conduct a careful review of the scientific literature and spontaneous reports received over the years, leading to the decision to require all SSRI and SNRI pharmaceutical companies to update drug indications with a new warning: "Cases have been observed in which symptoms of sexual dysfunction have persisted after discontinuation of treatment."

 

A clue, this, although evasive, which may be useful for those who will have to choose, weighing pros and cons, whether to undergo these treatments, and a meager "recognition" for those who, for years, was already supporting the dramatic and "unfair" condition. Over the course of 2020, one after another, the package inserts of these drugs have been updated. Patients, often faced with inadequate medical answers compared to the evidence they experience firsthand, are finding themselves online, where they compare and keep in touch with each other, form groups and associations nationally and internationally, open websites and organize fundraisers to contribute to the scientific research that is beginning to take hold. https://www.gofundme.com/f/27l8qmes5c.

 

Professor David Healy, psychiatrist, psychopharmacologist, scientist, and author, has been engaged on the research and outreach front on the topic of PSSD since 2012, when he noticed through his website Rxisk.org - which collects reports of adverse drug events - an unexpected number of reports of PSSD and also PGAD: persistent genital arousal disorder, which predominantly affects women and can be triggered precisely by the use and discontinuation of SSRIs and SNRIs. For these conditions, the etiology is currently unknown and there are no known resolving treatments. In 2018, Dr. Healy opened a fundraiser, the Rxisk Prize https://rxisk.org/prize/, designed to reward anyone who finds a cure for PSSD, with the goal of boosting research and drawing media attention to the problem. The prize now exceeds 100 thousand dollars. On the Italian front, important news dates back to 2020, when the Mario Negri Institute for Pharmacological Research began planning the first phases of research, such as a study on psychiatrists' awareness and an epidemiological study, plus further ideas aimed at understanding the etiology of the syndrome. 

 

One of the etiological hypotheses on PSSD that have been advanced over the years, namely that of neurosteroid imbalance in the nervous system following exposure to SSRIs, is being investigated by Professor Roberto Cosimo Melcangi at the University of Milan on an animal model. His research activity has already focused on another iatrogenic syndrome with symptoms quite similar to those of PSSD, namely post-finasteride syndrome. In a 2018 review, Melcangi hypothesized that the two syndromes may have etiological factors in common.

 

PSSD: emblem of something wrong in today's healthcare system

 

In PSSD itself, Dr. David Healy sees an emblem of what is a much broader problem that affects us all. A problem composed of an intertwining of factors that underlie the very functioning of the current drug-health system. To begin with, today "scientific validity" officially refers to RCTs, clinical trials: the results returned by them are considered the "evidence" that allows the approval of drugs. This is despite the fact that clinical trials are designed by the same pharmaceutical companies to meet a primary endpoint that is certainly not to detect the risks and damages caused by the drugs they want to market. To make matters worse, raw data from clinical trials are guarded by pharmaceutical companies and inaccessible to anyone else, even regulators such as the EMA or FDA. Articles in the literature are also written not by the actual authors of the clinical trials but by clever ghostwriters, tasked with highlighting what is wanted to be known. Dr. Healy is confident that the so-called evidence on which today's medicine is based is actually the largest collection of fake news on the planet. Data about drug risks are easily omitted or downplayed.

 

To support this dangerous "implant" there is also a conception of the drug by doctors and the health system that has forgotten a fundamental principle: a drug is primarily a poison, from which it is possible to derive a great benefit. Entering a substance in the body will interact with it causing a myriad of effects and of these, let's say, one hundred effects, one could be the desired one, while the other 99 undesired ones, which could be for us much more relevant than what we are looking for. In prescribing a drug and in taking it, a moral act, a judgment, a human encounter between doctor and patient is required. This is care.

But in recent decades, more and more, the Western world is witnessing a shift from health care to health services: systematic prescriptions of drugs that are supposed to prevent all sorts of health problems, but without considering all the harmful effects of those drugs that accumulate in the body and make us sick. In some industrialized countries life expectancy has begun to decline and to this overprescription of drugs Dr. Healy attributes a central responsibility that is being dangerously overlooked. Those who are harmed by drug treatment, as in the case of PSSD, witness a disconcerting scenario: they become practically invisible.

 

The doctor to whom one turns, not finding document ary "evidence" in the medical literature, disavows the patient's testimony. Moreover, any report to the pharmacovigilance authorities will be considered as an "anecdote". People harmed by drugs are victims of an entire health system that, after having subjected them to risks without any act of "judgment", prefers to abandon and deny them, when these people, in the flesh, are themselves the most concrete and real evidence of the possible consequences of treatments.

 

In his latest book "The Shipwreck of the Singular" David Healy explains how the healthcare system has evolved to reach this critical point that now requires our attention, but also a shared and courageous effort in the name of safeguarding all of us.

Those who wish to follow the conference can do so by clicking on this link: https://m.youtube.com/watch?v=mySezuvPBGk

 

[Marta]

Hi. I know this section of the forum is the hardest one. Sorry if I just ask here, I am so sick of the forums around on this pssd topic... I come in peace.

My question is,for someone who have read much more stories than I, is it possible to develop this pssd 13 months off? Or it's just the very very bad wave that hit me (now more than a month... appetite sleep anxiety touch sensitivity all disregulated) that brought this sexual disfuncion (anesthesia,zero libido,pleasureless orgasm) too?

On the drug at the <5mg doses i was doing ok and in these previous 13 months I was ok too on this side.

Thanks if someone answers.

[GeoJeep]

I would like to preface this by stating that I am aware of the NSFW nature of topics such as ED and PSSD, so I will try to word this using as few graphic details as possible. I would also like to note that I have lived with OCD for most of my life and, as is typical among those of us with OCD, I have been a hypochondriac since long before my adverse reaction to meds, and, as such, I am naturally inclined to panic at the appearance of any new symptoms. Having said that, I’ll get to the point.

 

I’ve had a very stressful couple of weeks, and my mental state has been rapidly deteriorating. A couple of nights ago, after experiencing a week of progressively increasing anhedonia, fatigue, and GI distress, I found that I suddenly had a great deal of difficulty achieving an erection, and the quality of any erection that I could achieve was not as good as it was before. It’s only been a few days, but this has yet to resolve.

 

Given that my most debilitating symptoms at the moment are cognitive impairment and anhedonia/emotional anesthesia, which, to my understanding are linked with PSSD, I am terrified that I am beginning to develop it. I don’t have any outstanding genital numbness, or at least any that is profound enough for me to definitively say that I have less sensation now that I did pre-ssri, which I’m hoping is a good sign. However, my libido has been steadily decreasing since this all started, and I have also been increasingly experiencing PE.
 

I suppose it is possible that these symptoms could be the result of the past 7 months of extreme stress and abject terror coupled with the fact that I’ve been terrified of PSSD since the beginning of this nightmare, but I can’t shake the thought that I’m starting to develop it. I imagine PSSD is one of those things where if you have it, you know you have it, but I can’t seem to convince myself that this isn’t PSSD. Anyone out there have any thoughts as to what this is?