PSSD Post-SSRI sexual dysfunction

[Fairsome]

2 hours ago, Daniel1269 said:

Hello,

 

Is the duration of being on the SSRI (and tapering off) linked to the risk of developing PSSD?

 

 I.e is there a higher chance of developing PSSD if you have been on the SSRI for a long time as opposed to less than 6 months? 

 

I’m trying to weigh up potentially tapering faster if duration is a contributing risk factor of PSSD?

Obviously need to consider risk for withdrawals too as PSSD will be the least of my concerns if I get debilitating WDs. So difficult to weigh up.

 

Could tapering too fast cause PSSD too? Would a slow taper be best with reducing PSSD and WD risk?

 

Have no sexual side effects from the Sertraline at present. 50mg since 23rd October 2023, starting my taper next week. 18 yrs old.

Any advice/insights would be greatly appreciated.

 

Many  Thanks.

Tapering too fast can cause PSSD, which emerges post-discontinuation. Definitely slow taper. 
But sometimes you can get sexual side effects that start while on the drug (sometimes months into it or when you increase your dose) and continue after that, no matter of the speed of tapering.

[Daniel1269]

@Fairsome,

 

Thank you, slow and steady it is, especially if it can occur with tapering too fast!

 

Tyvm.

[Faure]

Article in today’s Guardian about this:

 

https://www.theguardian.com/society/2024/mar/02/ssri-antidepressants-sexual-dysfunction-side-effects-consequences-libido

[Daniel1269]

On 2/12/2024 at 12:42 PM, Fairsome said:

Tapering too fast can cause PSSD, which emerges post-discontinuation. Definitely slow taper

@Fairsome,

 

What is the reasoning for this explanation?

 

Is it due to mitigating potential dopamine super sensitivity by tapering slower as opposed to quicker, therefore less likelihood of PSSD occurring?
 

I.e the slower the taper the better as there’s less of a shock/sensitivity to several neurotransmitters?

 

Any insights greatly appreciated.

 

Many Thanks.

[Fairsome]

4 hours ago, Daniel1269 said:

@Fairsome,

 

What is the reasoning for this explanation?

 

Is it due to mitigating potential dopamine super sensitivity by tapering slower as opposed to quicker, therefore less likelihood of PSSD occurring?
 

I.e the slower the taper the better as there’s less of a shock/sensitivity to several neurotransmitters?

 

Any insights greatly appreciated.

 

Many Thanks.

We don't truly know, the simple explanation is that stopping abruptly can put your body in a serious shock and doing a slow taper can help it to readjust more smoothly. These drugs have effects beyond the nervous system as well, it is incredibly complex.

[OffPills]

My 2 cents; 

 

-Slow taper.

-Exercise en eat healthy.

-Supplements, so the body has everything it needs to recover.

-Do not focus on the PSSD (easier said than done).

 

I hope everyone reading this will recover from this horrible condition (including myself)!! 💪🏻

[Daniel1269]

On 3/3/2024 at 5:12 PM, Fairsome said:

We don't truly know, the simple explanation is that stopping abruptly can put your body in a serious shock and doing a slow taper can help it to readjust more smoothly. These drugs have effects beyond the nervous system as well, it is incredibly complex.

@Fairsome
 

I see, thank you very much.

 

I suppose there is the unbeatable dilemma of the fact that sexual side effects may (or may not)occur many months down the line whilst being on the drug regardless of taper speed, yet you have to taper slowly and therefore be on the drug for a prolonged period of time, increasing the potential risk of developing sexual side effects, yet mitigating the risk at the same time!

 

However, one thing that helps to weigh this up is the fact that slower tapering can allow your body to readjust, therefore mitigating PSSD (whilst you still may experience sexual side effects months down the line) and the fact that debilitating WD is not worth the risk of trying to get off the drug quicker in an attempt to purely mitigate the chances of developing sexual side effects, and tapering too quickly can increase the risk of this too!

 

Let me know what you think?

 

Thanks so much again.

[6Eggs]

On 2/12/2024 at 11:42 PM, Fairsome said:

Tapering too fast can cause PSSD, which emerges post-discontinuation. Definitely slow taper. 
But sometimes you can get sexual side effects that start while on the drug (sometimes months into it or when you increase your dose) and continue after that, no matter of the speed of tapering.

 That is 100% correct, often enough tapering speed or not, PSSD symptoms can occur out of the blue during use and not necessary during tapering or discontinuation.

For me personally, my symptoms abruptly started 18 month after starting any anti psych (wasn't disclosed to me that's what the drug was) and it took me another year to figure that out, I was also on an MAOI for already some 4-5 year at that point which more recently I have learned that they always have this sexual enhancing at the beginning property that then degrades to sexual dysfunction with long term use, it wasn't until I saw a sex therapist that I was told these drugs are 99% the likely cause and they were.

Tapering off them actually restored most of my sexual function which was mainly arousal disorder and in turn ED.  But many months later after getting off the drug, I had a delayed and abrupt severe WD kick in, nearly all physical symptoms, and there brand new PSSD symptoms, not related to my original ones came in over a period of less than 24h and all the rarer ones associated with PSSD, burning pain ( the pain started the day I first reduced the dose slightly though, went away for those few months), flaccid glans syndrome, total numbness, retrograde ejaculation. But my arousal and libido actually remained well mostly since.  Some of the other symptoms that emerged later are excessively intense orgasm and borderline hyperspemia, nothing I ever experienced prior to meds, the last two I kind of see as positives, now more recently PE but I also feel hypersexual when I have that,  all of these symptoms come and go and are linked mostly to the wave/window pattern.  I have had many times awesome sexual function and amazing sex with my partner, best in my life in fact, but other times it feels as bad as the beginning of the PSSD and WD symptoms.

I only got off the MOAI 4 months ago, and again I'm experiencing that very delayed WD onset. It's like more typical smaller WD waves at the beginning after tapering and getting off them, then it settles down, then many months later, like a bomb goes off, the very severe stuff abruptly comes out of nowhere, including the PSSD stuff.

Anyway, what I am getting at is, PSSD happens regardless of what we do, if it is to happen, there is very little we can do to avoid it, even careful tapering does not negate the likelihood that it will, just merely delay the inevitable if you are one of the unlucky ones prone to it.

I have seen it happen as far out as 4 years post discontinuation after successful tapering.  It just lends credit to the whole fragile state we are left in for a long time post drug use, even if we don't show symptoms initially.

[OffPills]

30 minutes ago, 6Eggs said:

 Anyway, what I am getting at is, PSSD happens regardless of what we do, if it is to happen, there is very little we can do to avoid it, even careful tapering does not negate the likelihood that it will, just merely delay the inevitable if you are one of the unlucky ones prone to it.

I disagree. PSSD is rare, and as long as we don’t know why some people get this condition and others don’t, we don’t know if there are things we can do to avoid it. And although I believe PSSD is real, there’s also the possibility that some people with these sexual problems (even 4 years after discontinuation like you type), get them because of something completely else. We cannot measure this condition, that’s the point. There are things that are plausible, to me at least. Like tapering slow, eating healthy etc. Also focussing on the condition does not help me, so I will unfollow this topic and stay positive. 

[6Eggs]

Maybe I didn't phase is clear enough, what I mean is people that prone to it or actually get it, there is little to suggest that tapering ever so carefully prevents it.  There is quite a lot of data out there that seems to suggest tapering slow or CT doesn't seem to prevent it, anidotially it seems to delay it in some cases, and some people have had PSSD multiple times and tapering schedule didn't seem to have an effect on the outcome for at least those I have personally spoken to or carefully looked at their stories and history.

Although PSSD is rare, it not anywhere as rare as it seems when you look at the literature. Especially in the western counties where sexual health is taboo and almost always disregarded by medical professionals. So people having these issues reports never make it on record and the lack of awareness, many people who have these problems aren't even aware it's the meds that have causes it. I was one of these people, I knew very well my SD was from the meds, but the severe PSSD that came long after, I was sure it was something else as I never heard or knew of PSSD.  Even my docs thought it was a spinal or pudendal issue, then MS.  Most still are reluctant to say it was the psych meds fault but the tests and evidence it was could no longer be ignored.

At least 70-80% of my personal friends, and colleagues that have or are taking meds and were open enough to talk about these issues have/had sexual problems from antidepressants and similar drugs, about a third had enduring symptoms of some kind, one of my best friends had PGAD for a good while after stopping effexor.


But awareness is coming around slowly.  I just participated in a pych med withdrawal research survey that is going into some research study about it at the Adelaide university in Aus, the survey about med withdrawals had lots of sexual symptom questions which is great to see, they are finally seeing that PSSD is a common enough occurrence in WD syndromes not to be some separate rare unrelated condition.  On the survey they even had PGAD as options.

Interestingly, my sexual and mental health therapist, (used to be a GP prior), she said this is pretty common and was the one who said the drugs were the culprit to the SD side effects. She even said she has other clients in the same boat as me, enduring sexual problems from meds. Yes, that is biased because that's her job, but on the other hand, something supposedly so rare, ends up with a specialist counselling people from a small rural town with the same problems can't mean it's all the rare.

What might be rare though is how long PSSD and WD syndromes last for small subset of people, I seem to be one of those and like you said, no one knows for sure why it happens or how it's triggered.  I've been on the dreaded paxil when I was a teen (not in my sig as I forgot I even took that) and the side effects were horrible as well as the WD, but they only lasted a few days iirc. I had no SD at all as far as I recall and was as a teen would be at that age.

It was when I tried meds again at the age of 26-27 with Prozac that clearly I was not tolerant of meds any more and instantly got SD ( penile numbness and inability to climax, then ED started 2 weeks later), but I was already having some SD from extreme work burnout, but nothing out of the ordinary.  After I gave up and CT after good few months of use because it was making me worse in every way and weird visual symptoms called an end to it, the SD subsided pretty quickly and was back at the burnout baseline, maybe a bit better.

I'm starting to ramble at this point.
 

[OffPills]

Interesting @6Eggs, I think we agree, thank you for posting!

However, I do think that if true PSSD, so after stopping meds was so much more common, the knowledge about it would be more widespread. Even with the taboo on the subject.

 

(you didn’t start to ramble BTW)

 

[6Eggs]

I'm not sure why it's not as widely acknowledged or in literature as one would thing given what I have taken away from all of this.

The interesting thing is, both MAOI and APs both have mentions in literature on SD and it's ability to persist for some time along with other symptoms, yet there is very little on the subject with SSRIs, despite SD side effects are extremely common during use.

As a side note with MAOIs, there are two camps on the sexual function aspect that are contractive.  Most say they have no known SD side effects and some even say it enhances sexual function, then other literature say that long term use it's almost a given that SD emerges in the way it's written.

I concluded that this contradictive stance is likely on how long one is on an MAOI when this research was being done.

This was also the case with side effects, some say well tolerated, other's say SSRIs are favoured due to the poor side effect profile of MAOIs.

I think my speculation that the long term use explains this contradiction. I feel I tolerated it very well at the beginning, but got worse with time when I look back at it all, I just didn't know at the time and was given the whole "it the depression coming back".

Anyway, I think it might be possible that SSRIs got the golden treatment as they were hailed as a safe and low side effect class of drugs compared to the old MAOIs and Tri-cyclics and even APs used in conjunction with those (I read APs were commonly used to counter MAOI side effects, sounds familiar!)

So this could help explain why persistent symptoms of SSRIs were often not in literature but the older drugs are.  Less common probably, but also probably ignored more because they fit the outlier camp due to being less common.

But yeah, back to one of my older points, only a few of my docs acknowledged my SD, the psychiatrist refused to acknowledge the drugs were the cause, even though when I first went in and laid down my foremost concern about sexual side effects as I had a strong history of SSRIs causing me this issue. I was told, that none of the drugs I was being put on would effect sexual function, as you can see the huge list in my sig of the crap that was thrown at me, pretty much all of them can mess with sexual function.

One of the docs even said it was all in my head and anxiety was to blame, like what? 70% of my body lost feeling, parkinsonism like symptoms and all the rest... Yep, sure.  And you can imagine how easy SD is ignored as most docs don't think it's important if the common tests don't show anything.

When I was 19 and my pituitary just stopped working (cause unknown, perhaps a delayed paxil thing by a few years?, who knows?)  My sexual issues were well acknowledges as they had an obvious cause, 0 testosterone and I physically looked sick at 50kg looking like a prison camp survivor.

They gave me HRT and after 3 years I was good again, at least sexually, some lingering musculoskeletal problems and fatigue, naturally after you lose nearly 50% of your body weight.

Now with all this stuff I'm dealing with now, I just get slapped with an FND diagnosis, just because they don't have an official name for this WD syndrome, even the few that acknowledge and know the meds caused this.

Anything FND related goes like this, sorry, we can't help you, go away now.  Even disability for FND people here are treated like pretenders and rarely get the support they need.  On a side tangent, a self reported survey of FND patients, about 25% said they got this diagnosis after having an adverse event from having been prescribed antidepressants.  Yup! That totally happens a lot, including me.

In Aus, FND is super common, according to a neurologist that commented on the recent story of a small girl paralysed, he said FND is the most common neurological condition in Aus.  It really makes you think.

Another side tangent, I got my eyes recently tested and asked if I had any visual problems, I mentioned visual snow syndrome, I have it very badly at the moment and we started talking about AD meds, the lady said, she is very concerned about the amount of people she sees that are on them and they often mess with peoples ability to focus and often need a one up on the glasses prescription as a result. She said around 1/3 of her patients are on some kind of AD. She said they hand them out like candy without understanding the consequences. That seems disproportionally a lot!

When you are open and actively engage in psych med conversations with random people, it's like your eyes are open to an invisible epidemic of proportions you could not have imagined and yet it's basically silent.

[Fairsome]

I just agree with @6Eggs - even with slow tapering you may not necessarily prevent but just delay the emergence of PSSD that comes after discontinuation. 

 

If you want, you can look at the gut dysbiosis theory behind this - as the gut microbiome is involved in the neurotransmitters regulation, hormonal function, inflammation/immune response etc and I have seen like ten people recovering from PSSD with gut protocols.

[6Eggs]

I've had every aspect of my heath looked at and I could not be healthier otherwise, not so much was investigated with the gut but I feel that my gut health is very good.  As for immune studies, they went all the way and almost went for a spinal tap, but the manifestation of the symptoms advised my current doc to avoid a spinal tap due to the risks and he was confident there was no immune issues going on.

I later saw a neurologist, specialized in immune related conditions like MS, CFS etc... I came out clear on all that too.  Pretty sure I had some antibody panel done specific for neurons, receptors etc... All negative.

Also MRIs galore! Specifically looking for immune inflammation in the CNS. 

My symptoms often change in random places and often over seconds and minutes and have almost normal periods right after.

This can't be more true with the most annoying PSSD symptom I have, soft glans syndrome. I can have this symptom bounce from one extreme to another several times in a sexual session and without any particular cause or pattern or warning.  Something that is 100% impossible when it comes to immune mediated neurological issues or damage.  It's best explained by a highly unstable CNS, perhaps even minor seizure activity ( I show signs of this often, focal seizures I think they are called?)

I often see this kind of brain activity as waves of light shooting across my right eye.

Then when I was reasonably well for a few months, most of the PSSD symptoms went away, even soft glans was almost gone.

 

[OffPills]

2 hours ago, Fairsome said:

I just agree with @6Eggs - even with slow tapering you may not necessarily prevent but just delay the emergence of PSSD that comes after discontinuation. 

 

If you want, you can look at the gut dysbiosis theory behind this - as the gut microbiome is involved in the neurotransmitters regulation, hormonal function, inflammation/immune response etc and I have seen like ten people recovering from PSSD with gut protocols.

‘You may not necessarily’ is exactly my point. We Just don’t know! If you knew @Fairsome, I suggest you try and collect the RxISK prize and be my absolute hero.
 

I’m well aware of your ‘gut theory’, as well as other theories, but I stopped reading about these theories. And you have not seen ten people recover, but just read about them. I too, think some theories are very plausible, but there isn’t ONE theory that has cured everyone suffering from PSSD. That’s my whole point; We Still Don’t Know! 
 

I will not reply anymore on this subject, because I refuse to let this condition ruin my well-being even more than it already did.

 

[modelarz71]

3 hours ago, 6Eggs said:

I'm not sure why it's not as widely acknowledged or in literature as one would thing given what I have taken away from all of this.

The interesting thing is, both MAOI and APs both have mentions in literature on SD and it's ability to persist for some time along with other symptoms, yet there is very little on the subject with SSRIs, despite SD side effects are extremely common during use.

As a side note with MAOIs, there are two camps on the sexual function aspect that are contractive.  Most say they have no known SD side effects and some even say it enhances sexual function, then other literature say that long term use it's almost a given that SD emerges in the way it's written.

I concluded that this contradictive stance is likely on how long one is on an MAOI when this research was being done.

This was also the case with side effects, some say well tolerated, other's say SSRIs are favoured due to the poor side effect profile of MAOIs.

I think my speculation that the long term use explains this contradiction. I feel I tolerated it very well at the beginning, but got worse with time when I look back at it all, I just didn't know at the time and was given the whole "it the depression coming back".

Anyway, I think it might be possible that SSRIs got the golden treatment as they were hailed as a safe and low side effect class of drugs compared to the old MAOIs and Tri-cyclics and even APs used in conjunction with those (I read APs were commonly used to counter MAOI side effects, sounds familiar!)

So this could help explain why persistent symptoms of SSRIs were often not in literature but the older drugs are.  Less common probably, but also probably ignored more because they fit the outlier camp due to being less common.

But yeah, back to one of my older points, only a few of my docs acknowledged my SD, the psychiatrist refused to acknowledge the drugs were the cause, even though when I first went in and laid down my foremost concern about sexual side effects as I had a strong history of SSRIs causing me this issue. I was told, that none of the drugs I was being put on would effect sexual function, as you can see the huge list in my sig of the crap that was thrown at me, pretty much all of them can mess with sexual function.

One of the docs even said it was all in my head and anxiety was to blame, like what? 70% of my body lost feeling, parkinsonism like symptoms and all the rest... Yep, sure.  And you can imagine how easy SD is ignored as most docs don't think it's important if the common tests don't show anything.

When I was 19 and my pituitary just stopped working (cause unknown, perhaps a delayed paxil thing by a few years?, who knows?)  My sexual issues were well acknowledges as they had an obvious cause, 0 testosterone and I physically looked sick at 50kg looking like a prison camp survivor.

They gave me HRT and after 3 years I was good again, at least sexually, some lingering musculoskeletal problems and fatigue, naturally after you lose nearly 50% of your body weight.

Now with all this stuff I'm dealing with now, I just get slapped with an FND diagnosis, just because they don't have an official name for this WD syndrome, even the few that acknowledge and know the meds caused this.

Anything FND related goes like this, sorry, we can't help you, go away now.  Even disability for FND people here are treated like pretenders and rarely get the support they need.  On a side tangent, a self reported survey of FND patients, about 25% said they got this diagnosis after having an adverse event from having been prescribed antidepressants.  Yup! That totally happens a lot, including me.

In Aus, FND is super common, according to a neurologist that commented on the recent story of a small girl paralysed, he said FND is the most common neurological condition in Aus.  It really makes you think.

Another side tangent, I got my eyes recently tested and asked if I had any visual problems, I mentioned visual snow syndrome, I have it very badly at the moment and we started talking about AD meds, the lady said, she is very concerned about the amount of people she sees that are on them and they often mess with peoples ability to focus and often need a one up on the glasses prescription as a result. She said around 1/3 of her patients are on some kind of AD. She said they hand them out like candy without understanding the consequences. That seems disproportionally a lot!

When you are open and actively engage in psych med conversations with random people, it's like your eyes are open to an invisible epidemic of proportions you could not have imagined and yet it's basically silent.

Hello, Are there any cases in your country that someone sued a psychiatrist for prescribing ssri and then was sick because of it? After all, this is serious damage to health greetings 

[Fairsome]

1 hour ago, OffPills said:

‘You may not necessarily’ is exactly my point. We Just don’t know! If you knew @Fairsome, I suggest you try and collect the RxISK prize and be my absolute hero.
 

I’m well aware of your ‘gut theory’, as well as other theories, but I stopped reading about these theories. And you have not seen ten people recover, but just read about them. I too, think some theories are very plausible, but there isn’t ONE theory that has cured everyone suffering from PSSD. That’s my whole point; We Still Don’t Know! 
 

I will not reply anymore on this subject, because I refuse to let this condition ruin my well-being even more than it already did.

 

It's very likely that this condition has multiple etiologies, so there might not be one-size-fits-all cure. Everyone has to find the right 'key'.

[Daniel1269]

5 hours ago, 6Eggs said:

then other literature say that long term use it's almost a given that SD emerges in the way it's written.

I concluded that this contradictive stance is likely on how long one is on an MAOI when this research was being done.

This was also the case with side effects, some say well tolerated, other's say SSRIs are favoured due to the poor side effect profile of MAOIs.

I think my speculation that the long term use explains this contradiction. I feel I tolerated it very well at the beginning, but got worse with time when I look back at it all, I just didn't know at the time and was given the whole "it the depression coming back"

@6Eggs  @Fairsome @OffPills,

 

So do I still taper off slowly when duration is a potential factor to developing PSSD despite no current SD as per the above text, or do I go faster even tho this can increase risk of PSSD as well???

 

Just be blunt with me, do I taper slower or faster to mitigate PSSD risk , and provide a brief explanation and rationale?

 

So sick of the contradictive  evidence/advice out there!

 

Thank you all so, so much.

[Fairsome]

17 minutes ago, Daniel1269 said:

@6Eggs  @Fairsome @OffPills,

 

So do I still taper off slowly when duration is a potential factor to developing PSSD despite no current SD as per the above text, or do I go faster even tho this can increase risk of PSSD as well???

 

Just be blunt with me, yes or no with a brief explanation and rationale?

 

So sick of the contradictive  evidence/advice out there!

 

Thank you all so, so much.

Man, there is no definitive answer. If you haven't had any sexual sides effects while on the drug - it seems unlikely that they will develop later on in the drug use.

 

The best you can do is to taper slowly, to avoid nasty withdrawal symptoms and other issues, and hope that you won't have any problems after quitting.

[OffPills]

@Daniel1269

 

I do think that it’s wise to taper slowly. There is no evidence whatsoever, but there are things that, at least to me they are, are wise to consider. Like eating healthy, don’t drink alcohol or do drugs. Try to exercise and take supplements. To help our body and mind recover and heal. Just like @Fairsome mentioned, a slow taper is the only way to try and avoid nasty wd symptoms, and it seems to make the difference in my experience.

 

although, some of us may have slightly different opinions about this horrible condition. I wish you all the quickest recovery possible. Stay strong! 💪🏻

 

 

 

[Daniel1269]

3 hours ago, Fairsome said:

The best you can do is to taper slowly, to avoid nasty withdrawal symptoms and other issues, and hope that you won't have any problems after quitting.

@Fairsome,

 

Thank you, plan sorted, just gotta go slow and pray there are no problems post discontinuation 🙏.

 

Very much appreciated.

[Daniel1269]

3 hours ago, OffPills said:

 

I do think that it’s wise to taper slowly. There is no evidence whatsoever, but there are things that, at least to me they are, are wise to consider. Like eating healthy, don’t drink alcohol or do drugs. Try to exercise and take supplements. To help our body and mind recover and heal. Just like @Fairsome mentioned, a slow taper is the only way to try and avoid nasty wd symptoms, and it seems to make the difference in my experience.

 

although, some of us may have slightly different opinions about this horrible condition. I wish you all the quickest recovery possible. Stay strong! 💪🏻

@OffPills,

 

Thank you, now get off this thread!

 

Best of luck to yourself.

 

 

[6Eggs]

Taper slowly, there is no negatives in doing it slowly, and all the potential benefits in doing so on your side.

One of the post above said, if you don't have SD now then it's unlikely later.  I feel this is not true, there is a very real risk of SD emerging much later during use, I am one of these cases and it's pretty common from long term use (like years of use). Not saying it always turns to PSSD, often enough the SD goes away after you quit, on the other hand, there could be a link to PSSD.

However, tapering slower and not having SD, shouldn't risk PSSD because you are "still on the med" for a long while as you taper, you are still reducing the drug over time, so the risk to long term use should go down with the taper.    I found that reinstating and tapering slowly with the antipsychotic actually still saw symptom improvement despite the protracted WD basically not at all going aware or improving after re-instating, just stopped it getting worse.  I was on that for 2.5 years at that point. the AP was the worst WD imaginable, but in hind sight was easier than the "weak" anti depressant I was on, and I think that's because I was on it a good part of a decade and could well be the root cause of all of this, even if the AP initially triggered it.

My niece and I were talking about this, she is a social worker, in particular youth mental health. She is very familiar with SSRIs and other psych drugs which are in disproportional use among this group of people and said, "yeah, they almost always do that, they help sexual dysfunction at the start but after a while it makes it worse than it was at the begin"

I personally think there is a link between duration of use and the risk of emergent SD and PSSD.  And this is exactly the same link with other tardive side effects and severity and duration of WD.  Of course there is the other group of people who get this immediately, but that falls into the adverse drug reaction camp, which can sometimes include PSSD as well.

It makes complete sense as sexual function and response is one of the most complex systems in the nervous system and has a ton of inhibitory factors stemming from evolutionary pressures. Reproduction is always inhibited if there is health or disease issues, to protect the gene pool sort of thing.  It is better no to reproduce when illness is around than to A: pass on genes not conducive to survival in the current environment, B: Expend energy reproducing and raising offspring that won't make it and jeopardize the parents in the process.

Nature favours to shut down reproduction until better times arrive, because it's the best option long term.  So it doesn't take much to trigger sexual and reproductive problems. I see these things as a natural protection mechanism to ensure healthy offspring when conditions are favourable.

So when you having some chemical directly interfering with the CNS, it's no wonder sexual issues are so common, it literally takes stuff all to negatively effect that aspect of a person's health.

And the people that have no to little issues, that comes down to genes and environmental factors that afford them a higher tolerance than others. This comes back to the gene pool and evolution, these people have better suited genes for the current environment and are more likely to reproduce successfully.

It's actually interesting that the environment now has psych drugs as a selective pressure than directly affects reproduction at it's core.   Who knows, maybe in a few 100 or 1000 years if psych drugs remain status quo, we may have people resistant to WD and PSSD type syndromes.  Makes you think.

[Daniel1269]

@6Eggs,

 

Massively appreciate the in-depth responses, all the best to you

 

 

[SomethingAnonymous]

For women who have recovered from PSSD, did you feel like your clitoris was literally smaller and did you find you could only get any sensation from direct stimulation?

 

I'm trying to take my mind off of all of this but I keep getting the urge to masturbate which makes it hard to leave it all alone. When I try to get satisfaction, the indirect stimulation I used to use feels like nothing at all so I have to directly stimulate, which brings some level of pleasure but also some pain because it's too direct really. It's difficult to maintain the pleasure and it doesn't lead anywhere. 

 

I'm finding this so upsetting and I'd love to hear from someone who still had this problem a year after meds who made a 100% recovery?

[ThatOneGirlStitch]

@SomethingAnonymous
Hi. Took me two and over a half years but here I am. I can orgasm again. Before it was like nothing. Not the first time that the clitoris become smaller, common complaint. It might be because that area can not get stimulated, lack of blood flow, etc. To be fair I was also in agony so this was not my biggest issues. 
I also had PGAD on top of it so not fun at all. 
I used ice and heat in the area which helped a bit with any discomfort. 
That is my experience, hope it helps.

[6Eggs]

8 hours ago, ThatOneGirlStitch said:

@SomethingAnonymous
Hi. Took me two and over a half years but here I am. I can orgasm again. Before it was like nothing. Not the first time that the clitoris become smaller, common complaint. It might be because that area can not get stimulated, lack of blood flow, etc. To be fair I was also in agony so this was not my biggest issues. 
I also had PGAD on top of it so not fun at all. 
I used ice and heat in the area which helped a bit with any discomfort. 
That is my experience, hope it helps.

 

What was your symptoms of PGAD? I feel I have a manifestation of that too. Mine has and still is burning hot pain like sensation on top of normal feeling and tactile sensation.  Oddly, I have it in my feet and sometimes in my mouth. 99% of the time all these areas are the same sensation and at the same time.

Worse area is anal and perineal areas for me with genitals specifically part of that pain but to a lesser extent.  I also more recently had bouts of climax/arousal sensation for no reason and experiencing painful PE.  The pain I have had basically 3 times now, 1st time attempting to taper/CT too quick (doc's suggestion), 2nd time but not as bad 18-19 months after successfully reinstating and tapering from the help of this forum, and now a 3rd time after successfully getting of the MAOI  antidepressant I was on.

The first drug an antipsychotic gave me mostly classic PSSD lost of sensation (totally numb genitals and extremities), soft glans syndrome and massive burning pain, but the MAOI antidepressant had been more of the PGAD type symptoms, pain, hyper sensitivity genitals with some minor numbness at the same time (not sure how that's possible) PE with super intense orgasms that hurt (electrical burning like prickling sensation) and severe discomfort with a similar but different burning sensation.

The ED this time is also a bit different, less soft glans syndrome but it still happens, often resolves multiple times within a day, so the soft glans thing is very erratic at the moment.  But overall, the ED is more throughout and uniform and if I feel well enough, mentally and neurologically/physically, it can be very close to normal.

As for shrinkage of the clitoris, it's the same symptoms males get with the penis. This is correct that it is reduced blood flow. Very common with PSSD, but I only had it here any there, and was one of my most minor symptoms.

Erectile tissue, both clitoris and penis is all the same (same organ essentially but with different morphology if that's the right word).  There are actually 2 sets of nervous pathways going in and acting upon the erectile tissue, stimulating fibres and nerve endings and inhibitory fibres and nerve endings.  At rest state there is a tone on the inhibitory fibres that release norepinephrine to constrict the blood flow, the stimulating fibres release NO2 and that expands the blood vesicle.   So normally at rest states both have a tone on them but low level that keeps the tissue flowing at base line.

If there is weak or lack of tone from stimulating fibres the flow reduces below base line, also if there is too much tone on the inhibitory fibres the same things happens.  These inhibitory pathways is what gives rise to shrinkage during cold or anxiety, stress etc... This is the thing that is triggered for those males who have psychogenic ED or if you have been too nervous in a sexual situation, you might notice the penis shrinks substantially smaller than it would be other wise and why it is so hard to get an erection from that point.

PSSD disrupts one or both.  There are conditions where the inhibitory is suppressed and the stimulating is activated and this gives priapism, a side effect of some of these meds and can even occur in PSSD (I have had bouts of spontaneous erections that lasted around 20min to almost an hour with no to little mental input.


Also to complicate things more for females.  Both penis and clitoris are made from two types of erectile tissue. The exposed part on a female is the same spongy tissue that forms the glans and urethra channel on a male,
The harder (during arousal) cavernous tissue that makes up the shaft on the penis is the same sort of tissue in the bulbous lobes of the internal parts of the clitoris, either side of the vulva.  This harder tissue for what ever reason has it's own nerves separate from the spongy erectile tissue, and seems to less and often enough not effected by PSSD.  However the spongy tissue seems to suffer from weak tone (signalling) from the CNS during PSSD, this give rise to soft glans syndrome in males (pretty common from what I have read, subtle or not) and in females, being the part that exposed means this would be more obvious as shrinkage and excessive softness, even though the internal parts I suspect would be less affected.

[SomethingAnonymous]

Thanks guys, that was reassuring. 

 

I'm having all kinds of weird symptoms at the moment but I'm definitely getting my sex drive very much back. I just wish I could feel the sensation. I have an appointment for my back tomorrow, such I think will be a total non event, but once I've ruled that out I can go back to my gp and maybe she can refer me to someone who can do an examination. I've been trying to lock down exactly what I'm feeling and how it's different and I guess it's kind of like the clitoris is underneath the skin rather than being external anymore. After reading online about phimosis, I tried to retract my clitoral hood, and what do you know, it doesn't retract, so I wonder whether the skin has fused or anything - it just kind of feels like the sensitive part is buried deep down. I'm kind of wondering now whether it even has anything to do with the pills directly or whether it could be what happens if it's just not in use for five years (at the time I couldn't feel anything because of the pills). Seems to me there are very few doctors that actually look at the clitoris so not sure anyone will be able to examine. 

[6Eggs]

On 3/15/2024 at 11:26 AM, SomethingAnonymous said:

Thanks guys, that was reassuring. 

 

I'm having all kinds of weird symptoms at the moment but I'm definitely getting my sex drive very much back. I just wish I could feel the sensation. I have an appointment for my back tomorrow, such I think will be a total non event, but once I've ruled that out I can go back to my gp and maybe she can refer me to someone who can do an examination. I've been trying to lock down exactly what I'm feeling and how it's different and I guess it's kind of like the clitoris is underneath the skin rather than being external anymore. After reading online about phimosis, I tried to retract my clitoral hood, and what do you know, it doesn't retract, so I wonder whether the skin has fused or anything - it just kind of feels like the sensitive part is buried deep down. I'm kind of wondering now whether it even has anything to do with the pills directly or whether it could be what happens if it's just not in use for five years (at the time I couldn't feel anything because of the pills). Seems to me there are very few doctors that actually look at the clitoris so not sure anyone will be able to examine. 

It would be from the medication with high certainty.  They mess with every aspect of sensation and perception imaginable, PSSD and non PSSD symptoms.

I have literally had 1000s and 1000s of different symptoms and more than half of them where sexual related symptoms.  The thing is, most people aren't aware that your body and every single part of it, down to the microscopic level is thoroughly innervated and most functions are completely autonomous. So when these drugs mess with your entire nervous system you get some super weird physical symptoms that look like other conditions.

Some of the weird ones I have had and still get it dry hands and feet and that occurs around bed time or when I am on either the phone or computer vegging out or doing stuff that takes my mind away from my body, for some reason this stops my skin on my hands and feet from secreting moisture and they rapidly dry out to the point the skin pulls so tight I can't open my hands and feet without the skin nearly cracking. As soon as I notice this and put my attention to it, the skin moisture returns to normal within a few min.

Similar issues with uneven blood flow to the glans have caused rash looking blotches and patchy partial erections, giving a lumpy look.  I have also had these itchy rash like reactions on my hands for no reason, again, only for a few min bursts every so often and it mimics an allergic reaction.

Another is waxy secretions on my legs which makes my hair get stuck to the skin, so the solution was to shampoo my legs and conditioner to relieve the symptom.

All these normal but subtle body functions like skin maintenance/health are controlled by the autonomic nervous system and the fibres that innervate everything.

I too was thinking I had all these separate health problems, but their minute to minute coming and going and changing ruled out those conditions and could only be explained by unstable signalling or lack thereof of the autonomic nervous system.
 

[Prozack]

What the experts like @6Eggs or @Altostrata mean about this theory/post? Maybe it can show us how WD symptoms arise from gut dysbiosis? This is so congruent with the fact that most of the people in WD feel worse after eating...

 

[SomethingAnonymous]

On 3/16/2024 at 1:56 AM, 6Eggs said:

It would be from the medication with high certainty.  They mess with every aspect of sensation and perception imaginable, PSSD and non PSSD symptoms.

I have literally had 1000s and 1000s of different symptoms and more than half of them where sexual related symptoms.  The thing is, most people aren't aware that your body and every single part of it, down to the microscopic level is thoroughly innervated and most functions are completely autonomous. So when these drugs mess with your entire nervous system you get some super weird physical symptoms that look like other conditions.

Some of the weird ones I have had and still get it dry hands and feet and that occurs around bed time or when I am on either the phone or computer vegging out or doing stuff that takes my mind away from my body, for some reason this stops my skin on my hands and feet from secreting moisture and they rapidly dry out to the point the skin pulls so tight I can't open my hands and feet without the skin nearly cracking. As soon as I notice this and put my attention to it, the skin moisture returns to normal within a few min.

Similar issues with uneven blood flow to the glans have caused rash looking blotches and patchy partial erections, giving a lumpy look.  I have also had these itchy rash like reactions on my hands for no reason, again, only for a few min bursts every so often and it mimics an allergic reaction.

Another is waxy secretions on my legs which makes my hair get stuck to the skin, so the solution was to shampoo my legs and conditioner to relieve the symptom.

All these normal but subtle body functions like skin maintenance/health are controlled by the autonomic nervous system and the fibres that innervate everything.

I too was thinking I had all these separate health problems, but their minute to minute coming and going and changing ruled out those conditions and could only be explained by unstable signalling or lack thereof of the autonomic nervous system.
 

I dunno that I can say there's certainty right now. I haven't even been able to see a gynaecologist/vulva specialist yet and my main symptom (vastly diminished clitoral sensation) is a known thing that can happen to a woman for a bunch of reasons - mostly hormonal or certain skin conditions. Difficulty with arousal can also be caused by many things in women. I feel personally that to blame the pills would have to be a diagnosis of exclusion given there are so many other things that can cause this stuff. I feel that it's unlikely to be psychological, because I mean.... you can self stimulate in childhood - before you even know about, much less have an interest in, sex - so it doesn't make sense to me that the clitoris itself would stop responding due to self image or something like that. I can see how low libido could be psychological, though. I appreciate I'm on a withdrawal forum and that I literally have the symptoms of PSSD - and to be clear, I am not dismissing anyone else's experiences here - but for me personally I'm going to need them to rule every single other cause out before I accept PSSD. At this point if a Dr said PSSD I'd think it was a cop out.

 

In other news, my back is almost certainly fine. The physio was at pains to remind me that he hadn't actually ruled anything out, but I feel like we were pretty much on the same page re the relative unliklihood that this is spinal. Now waiting to see the GP again.... so much waiting...

[Altostrata]

It would be a waste of staff time to comment on reddit posts. There are many good, bad, and very stupid reddit posts. Please discuss reddit posts on forums specialized for PSSD, such as pssdforum.org

[6Eggs]

On 3/19/2024 at 8:42 AM, SomethingAnonymous said:

I dunno that I can say there's certainty right now. I haven't even been able to see a gynaecologist/vulva specialist yet and my main symptom (vastly diminished clitoral sensation) is a known thing that can happen to a woman for a bunch of reasons - mostly hormonal or certain skin conditions. Difficulty with arousal can also be caused by many things in women. I feel personally that to blame the pills would have to be a diagnosis of exclusion given there are so many other things that can cause this stuff. I feel that it's unlikely to be psychological, because I mean.... you can self stimulate in childhood - before you even know about, much less have an interest in, sex - so it doesn't make sense to me that the clitoris itself would stop responding due to self image or something like that. I can see how low libido could be psychological, though. I appreciate I'm on a withdrawal forum and that I literally have the symptoms of PSSD - and to be clear, I am not dismissing anyone else's experiences here - but for me personally I'm going to need them to rule every single other cause out before I accept PSSD. At this point if a Dr said PSSD I'd think it was a cop out.

 

In other news, my back is almost certainly fine. The physio was at pains to remind me that he hadn't actually ruled anything out, but I feel like we were pretty much on the same page re the relative unliklihood that this is spinal. Now waiting to see the GP again.... so much waiting...

 

I don't at all think if a Dr said PSSD that it's a cop out, quite the opposite in my opinion as most doctors, A: never heard of it, B: dismiss it as a real condition.

I think way too much of the medical system and society don't give women's health and especially sexual health enough credit. And the fact it's somehow still treated as women's sexual anatomy and functions as a mystery is complete bs, male and female and anything in between are very much same other than the necessary differences.


Since I have had catastrophic endocrine condition in my late teens and early 20s that would have probably killed me or shortened my life if untreated, which was low hormones for about half of them, and the most important one for sexual/reproductive health and function, testosterone and oestrogens, completely zero! like not even detectable.

I can tell you first hand, having loss of critical hormones does not cause changes or loss of sensation.  What it does cause is asexuality, totally different to loss of libido. You aren't able to see people as male or female or anything remotely sexual. People just become people, like the same as you would view the sky as sexual for example, like you wouldn't even put the two thoughts together, that's how people become when you loose key hormones.

If you try to stimulate one's self when you lack hormones, you can sort of achieve orgasm but it's very weak but feels non sexual, it's a weird feeling, also there is no ejaculation or contractions in a male, I assume it would be lack of contractions in a female as well.  But the sensation of tactile and everything else remains unchanged. I lived like this for about 3 years and another 2 or so before the HRT recovered me.

As for the psych drugs, as soon as I took them, there was numbness down there, at least with SSRIs, all of them caused numbness like I had numbing cream on my parts. As soon as I stopped them, the feeling came back straight away, although the ED tooks months (probably mild PSSD in retrospect).   When I first tried prozac, each pill causes a surge in genital numbness that subsided about 50% before the next dose.

This is the main reason I CT it after a few months, couldn't take it, not to mention it made me manic and more depressed at the same time and visual disturbances wouldn't go away and permanent amnesia for passwords, banking numbers and details etc... And then delusions about certain things when I think back.  Very bad stuff.

When it came to this PSSD or the WD I am currently in, my numbness started with the genitals and spread to include my whole lower body from the waist down, and my face, head and hands and upper back, like total numbness. Could stab the worst areas with a thumb tack and not feel a thing. I recall being in the hospital and they were doing the cotton and then prick test over parts of my body, I was not responding to most of it, genital area was by far the worst, I didn't know they even started the test it was totally dead from feeling, like as if those parts where completely severed from my body.

It took 12 months before the feeling came back to normal most of the time with some days still feeling odd and dull.    For what ever reason, then skin sensation or any sort of body tactile and interception is affected by these drugs, the genitals are most often the worse or in many cases the only place affected.  No one knows why the genitals specifically, still a total mystery. it's just how out brains are structured and maybe comes down to the whole reproduction/environmental sensitivity selected for by evolution, but that's just my guess.

To this day, nearly 3 years into the whole ordeal, my finger tips are still slightly numb on and off and still get bouts of desensitised patches in various parts of the body come and go and the glans is also still fluctuating in sensitivity a little bit, enough to notice but not upset me.

But just as myself, 100% you need to go through the motions of ruling and testing things out with your docs, it's the only way you can come terms with the whole thing and you can never be at peace until you know what you know. It's a long and frustrating journey, and the most important thing is to refrain from the offers of more pills to fix the issues, it only makes you worse.  I know as I was given Gabapentin for the excruciating "nerve pain" throughout my body, one single pill = emergency room. Wouldn't recommend!

[SomethingAnonymous]

3 minutes ago, 6Eggs said:

 

I don't at all think if a Dr said PSSD that it's a cop out, quite the opposite in my opinion as most doctors, A: never heard of it, B: dismiss it as a real condition.

I think way too much of the medical system and society don't give women's health and especially sexual health enough credit. And the fact it's somehow still treated as women's sexual anatomy and functions as a mystery is complete bs, male and female and anything in between are very much same other than the necessary differences.


Since I have had catastrophic endocrine condition in my late teens and early 20s that would have probably killed me or shortened my life if untreated, which was low hormones for about half of them, and the most important one for sexual/reproductive health and function, testosterone and oestrogens, completely zero! like not even detectable.

I can tell you first hand, having loss of critical hormones does not cause changes or loss of sensation.  What it does cause is asexuality, totally different to loss of libido. You aren't able to see people as male or female or anything remotely sexual. People just become people, like the same as you would view the sky as sexual for example, like you wouldn't even put the two thoughts together, that's how people become when you loose key hormones.

If you try to stimulate one's self when you lack hormones, you can sort of achieve orgasm but it's very weak but feels non sexual, it's a weird feeling, also there is no ejaculation or contractions in a male, I assume it would be lack of contractions in a female as well.  But the sensation of tactile and everything else remains unchanged. I lived like this for about 3 years and another 2 or so before the HRT recovered me.

As for the psych drugs, as soon as I took them, there was numbness down there, at least with SSRIs, all of them caused numbness like I had numbing cream on my parts. As soon as I stopped them, the feeling came back straight away, although the ED tooks months (probably mild PSSD in retrospect).   When I first tried prozac, each pill causes a surge in genital numbness that subsided about 50% before the next dose.

This is the main reason I CT it after a few months, couldn't take it, not to mention it made me manic and more depressed at the same time and visual disturbances wouldn't go away and permanent amnesia for passwords, banking numbers and details etc... And then delusions about certain things when I think back.  Very bad stuff.

When it came to this PSSD or the WD I am currently in, my numbness started with the genitals and spread to include my whole lower body from the waist down, and my face, head and hands and upper back, like total numbness. Could stab the worst areas with a thumb tack and not feel a thing. I recall being in the hospital and they were doing the cotton and then prick test over parts of my body, I was not responding to most of it, genital area was by far the worst, I didn't know they even started the test it was totally dead from feeling, like as if those parts where completely severed from my body.

It took 12 months before the feeling came back to normal most of the time with some days still feeling odd and dull.    For what ever reason, then skin sensation or any sort of body tactile and interception is affected by these drugs, the genitals are most often the worse or in many cases the only place affected.  No one knows why the genitals specifically, still a total mystery. it's just how out brains are structured and maybe comes down to the whole reproduction/environmental sensitivity selected for by evolution, but that's just my guess.

To this day, nearly 3 years into the whole ordeal, my finger tips are still slightly numb on and off and still get bouts of desensitised patches in various parts of the body come and go and the glans is also still fluctuating in sensitivity a little bit, enough to notice but not upset me.

But just as myself, 100% you need to go through the motions of ruling and testing things out with your docs, it's the only way you can come terms with the whole thing and you can never be at peace until you know what you know. It's a long and frustrating journey, and the most important thing is to refrain from the offers of more pills to fix the issues, it only makes you worse.  I know as I was given Gabapentin for the excruciating "nerve pain" throughout my body, one single pill = emergency room. Wouldn't recommend!

I meant that loss of clitoral sensation is often experienced by women around menopause. It's because oestrogen keeps the tissues healthy in the vulva, and also because it helps to keep the area vasodilated. So with less blood flow and thinning tissues, sensation is reduced. I'm only 37 though and have regular periods so I'm unclear at the moment whether it's possible for me to have lost enough oestrogen yet. I expect not. It would seem a bit drastic in an ovulating woman, but then I don't know anything about anatomy. 

 

I've just paid through the nose for a private consultation with an ob/gyn who has an additional specialism in psychosexual medicine so I'm hoping I can basically square off all/ most causes in one go (in about five weeks time when I see her!)

 

I'm sorry to hear about all of your experiences. 

[6Eggs]

Just as a reference, I've had my hormones tested regularly since I was ill from the endocrine issues, so I have a comprehensive history to look back on prior to ever starting the psych meds.  My hormones are actually the best they have been since I fully recover from the endocrine stuff and very solid,  my T baseline post HRT recovery, and assuming baseline if the endocrine failure never occurred has been a sold 20-21 nmol/L, during the worst of my work burnout and all the attempts to try these meds that only made me sicker, the lowest it ever got was about 16-17 which is still well above the min levels expected to cause issues.  My recent blood tests came back with 20.7.   So yes, you can indeed have completely normal hormones and have the physical symptoms down there that mimic such issues.

Most PSSD patients don't have any disruption to their endocrine, and not normally ones that would cause issues if they have some deviation from their baseline. But, 100% if you are mentally/physically sick chronically, your hormones do drop off somewhat, comes back to the reproductive/environmental feedback, bad times = don't have offspring.  So it's actually hard to say if that's a direct effect of the drugs to have slightly lower hormone levels or just a natural effect of being unwell in general. I def believe it's the later in most cases having my own data to back that.  Some of these drugs do effect hormones directly, but most that do are in the antipsych class, however mine didn't at all, was actually the first thing they checked when I complained of the SD emerging years after already taking the drugs.

But, go get it all checked out, it's the best thing for the road to recovery, whether they find anything or not.

[Breathdeep]

On 10/19/2022 at 11:39 PM, Spruce30 said:

I have the sexual symptoms, and emotional numbness. 

 

My PSSD has been a little easier recently. 

@Spruce30 I'm really interested to hear a little more. I noticed a comment on an old thread in which you stated you'd had pssd for five years. You were clearly worrying you'd never heal. How long have you had pssd now and have you healed to a good degree?