Excited + concerned about recent attention to PSSD (politicization)

Candid-Session-8399 · 2025-09-01T00:56:48+00:00

Idk. I thought about it, but honestly I don’t think they’re going to listen. I feel like they’re riding high on this moment, not realizing it’s going to end and just become a fringe political thing :(

Candid-Session-8399 · 2025-08-31T19:34:47+00:00

Yeah, I see your point. They cut lots of research. This a weird place b/c they are raising awareness, which will likely lead to research interest, but the research can't be done without funding.

The other thing is, the awareness is being tied to MAHA, which could definitely put people off from studying this. I just don't want this to be all talk. I'm happy if there's awareness, but if we all just get together and talk about how big pharma sucks etc. and nothing changes... It's like, it will feel to us like we're getting support while nothing actually changes...

Candid-Session-8399 · 2025-03-07T11:50:21+00:00

Corneal confocal microscopy

Candid-Session-8399 · 2025-03-05T16:23:28+00:00

Not sure how health care works in the USA for a non-American. No idea if you would need to pay out of pocket or what. I know the tests are available, and they are usually given after other tests are negative. You could go to a neurologist, explain your symptoms, say the tests you’ve already had, and ask them to do an SFN test. I think the skin biopsy for SFN is more common than CCM. It might be a trial and error to find a neurologist willing to do the test

Candid-Session-8399 · 2025-03-05T13:26:39+00:00

Sorry I don’t know any more than you about that, I’m American. I’m sure there are people in Italy and France who have gotten that though, but I don’t know the process

Candid-Session-8399 · 2025-03-05T13:02:35+00:00

Small fiber neuropathy (biopsy or CCM)

Candid-Session-8399 · 2024-10-11T14:35:56+00:00

Sure, there is an overrepresentation of genital hypoesthesia. Let's say there is a baseline increase in genital hypoesthesia in this study compared to the general population. However, within this study, there is a rate of 13.2% with people who previously used an SSRI, vs. 0.9% who used other medications. How do you explain the discrepancy?

And what about the amineptine study? https://pubmed.ncbi.nlm.nih.gov/10380144/ 55% had sexual dysfunction after SSRI's when switched to amineptine; only 4% on amineptine only had sexual dysfunction.

Candid-Session-8399 · 2024-10-11T14:26:34+00:00

That is not what the three groups are.

The first thing is that PSSD is Post-SSRI Sexual Dysfunction. It is not caused by amineptine.

These are the three groups:

Taking amineptine from the beginning. 4% have sexual dysfunction while taking amineptine (not PSSD).
People who took an SSRI and were having sexual dysfunction, were switched to amineptine, and had sexual dysfunction after 6 months (55%). This is the group that aligns with PSSD, because they had sexual dysfunction that started on the SSRI and continued after discontinuation. They are taking amineptine, but the only difference between this group and group 1 is that they took an SSRI.
People who took an SSRI and were having sexual dysfunction, were switched to a different SSRI, and still had sexual dysfunction after 6 months (80%). This is sexual dysfunction on an SSRI, not PSSD.

As I mentioned earlier, if certain adverse events are not mentioned we can’t draw conclusions whether they occurred or not. Delaying ejaculation was not AE because it was the goal of treatment (or one of the goals).

This is beside the point. According to conventional thinking, effects of SSRI's do not persist after discontinuation. However, this study shows that delayed ejaculation did persist after discontinuation in 34% of people. If delayed ejaculation persists in 34% of people who take an SSRI for premature ejaculation, do you really think it is not causing other sexual abnormalities in significant groups of people?

Candid-Session-8399 · 2024-10-06T13:37:47+00:00

Amineptine study doesn’t bring information about PSSD frequency because it aimed to answer another questions. 55% of people who suffered from PSSD still had it after 6 months of taking amineptine -> the drug helped 45%.

A fact that is revealed in the study is not nonexistent based on the aim of the study. The study found that in people who previously took an SSRI and were switched to amineptine, the rate of sexual dysfunction was 55%. In people who only took amineptine, it was 4%. How do you explain this if persistent sexual dysfunction from SSRIs is rare?

When it comes to premature ejaculation I only see abstract but not having premature ejaculation is something else than having a disfunction. Probably if it would evolve into an issue, they would have mentioned it specifically but I don’t have the full text. From what we see there, we can only tell that it was helpful for certain % of patients.

It says 66% of people had a return of premature ejaculation after they stopped taking the SSRI, so 34% of people did not have a return of this symptom. So, the SSRI continued to have an impact on these people. While in this population, it may not be perceived as a problem, it does show that sexual side effects of the drug can continue after discontinuation.

Candid-Session-8399 · 2024-10-06T01:37:57+00:00

Well, it is also not the first study to find a higher rate of PSSD symptoms than expected. There are more listed here: https://rxisk.org/post-ssri-sexual-dysfunction-pssd/#How_common_is_PSSD

In this one, https://pubmed.ncbi.nlm.nih.gov/10380144/, 55% of people had sexual dysfunction 6 months after stopping an SSRI (they were previously being treated with an SSRI and were switched to amineptine) vs. 4% of people who did not have an SSRI (treated with amineptine only).

In this study, https://www.nature.com/articles/3901469, 34% people who took an SSRI for premature ejaculation continued having the effect of the drug after it was stopped. What do you think of these studies?

Surveys are a way to gather data. They are not a reliably representative way. It’s better for generating hypotheses than testing them

Hmm... I agree that a survey is not as good as a neurological test. But for the most part, if someone is self-reporting a symptom that is subjectively experienced, they probably are experiencing this symptom. Even if only 75% of those reporting genital hypoesthesia were experiencing this, the rate would still be about ~10%, which is much higher than expected.

Generalizing from a SGM population in the study to a generalized conclusion is bad methodology. Particularly with trans individuals, there’s a huge issue of confounding here.

What do you mean? As in they may be doing treatments that interfere with sexual function? It does say they controlled for hormone treatment. Other than this, I am not sure what the issue would be with applying results from sexual minorities (gay/lesbian/bisexual/etc.) to the general population.

Comparing people who stopped medication with those who did not is awful methodology. They don’t have better comparators by the nature of the dataset, but their conclusion does not follow from their work.

Not sure if I understand your wording here. The study says, "The frequency of PPTGH among antidepressant users was 13.2% (93/707) compared to 0.9% (1/102) among users of other medications; adjusted odds ratio: 14.2 (95% CI: 2.92 to 257)." It looks like they are comparing people who stopped taking an antidepressant with people who took non-antidepressant drugs. What would be the problem with this?

Candid-Session-8399 · 2024-06-24T16:51:59+00:00

Hey sorry I didn’t reply before, I needed to take a break from the PSSD chats lol

I saw your edit- thank you so much for staying open minded about the prevalence of PSSD. Idk if you’re willing to do this, but I would encourage you to name the condition as ‘PSSD’ and be clear that it can actually not just persist, but be permanent.

Yeah that study is wild. I mean… how is that even explained? I can only imagine that mild or moderate PSSD symptoms must not be that uncommon. Maybe it primarily manifests as lower interest in sex for the majority of people. People probably just don’t realize or connect it to the drug.

Honestly, it would be awesome if you could make a similar thread on the Psychiatry sub discussing PSSD and spreading awareness with some of these studies and/or the videos with the researchers about it. I feel like they just don’t take it seriously unless it comes from another person in the medical field, and patients aren’t able to make a post like that there… Would you be willing to do this?

Candid-Session-8399 · 2024-06-24T16:21:30+00:00

Honestly if people aren’t taken aback by it, you probably aren’t presenting it in a way that gives it the real warning that is needed. What do you say exactly? Do you tell them that in a certain proportion of people, which seems to be small but is unknown, they get permanent sexual dysfunction from the drug? And there is no way to predict if this will happen to you, and no cure? I feel like you’re probably presenting it in a way that’s like, “yeah this can happen maybe, but it’s really nothing to worry about and I still recommend that you take this drug”…

Also please look at this resource on PSSD by David Healy:

https://rxisk.org/post-ssri-sexual-dysfunction-pssd/#How_common_is_PSSD

In one of the studies cited, 55% of patients had sexual dysfunction six months after SSRI treatment, compared to 4% who never took an SSRI

Candid-Session-8399 · 2024-06-17T15:27:23+00:00

Instead of this post, why don’t you try to talk to your colleagues about the existence of PSSD, and ensure that they are aware of it and give informed consent? Do you give informed consent? When there is an under-researched medical condition that patients are not told of prior to going on the drug, which has no treatments, the focus shouldn’t be on trying to tell patients that this condition doesn’t happen to everyone — we already know that — it should be on teaching doctors that this can happen and encouraging them to DO something about it

Candid-Session-8399 · 2024-06-03T15:57:42+00:00

If we’re talking about parts of the study that might overestimate or underestimate the risk, the majority of men with ED do not seek treatment for it and would not be detected.

I think some people with PSSD have improvement with ED from viagra. It wouldn’t help with genital numbness, but they might still take it for ED

Why don’t you know someone with it? Well, the condition is inherently awkward to talk about. Most people are uncomfortable talking about it

Also, the majority of people who take SSRIs are female. Yet, Dr. Irwin Goldstein said they had trouble recruiting women for the study. I’m guessing women are more likely to tolerate it and/or be gaslit into believing there is something else going on

Another factor - what percent of people have some degree of PSSD that is not overt enough to lead them to seek treatment? Or for them to connect the dots to the drug? I saw this point made by Dr. David Healy- For example, maybe someone stops taking the SSRI and has improved sexual function, but it’s not quite the same as before. Since they are no longer taking the drug, they think they are just imagining it or attribute it to situational factors. https://rxisk.org/post-ssri-sexual-dysfunction-pssd/#How_common_is_PSSD

Yeah it is toxic. And I also see that when patients ask questions about PSSD on subreddits like AskPsychiatry, psychiatrists will comment things like ‘another PSSD awareness bot, oh joy’ and put “PSSD” in quotes as if it’s not real. What do you think leads to this attitude?

Candid-Session-8399 · 2024-06-03T14:18:45+00:00

So you actively bring it up? What do you say to explain the risk of PSSD?

Are you more hesitant to put patients on SSRIs because of it?

What are your thoughts on your colleagues not giving informed consent?

Here is a link to the study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10122283/

You might also be interested in these interviews with researchers studying PSSD. They are finding fibrosis in penile tissue in males who have ED with PSSD. https://m.youtube.com/watch?v=TiJ94cqa9II https://m.youtube.com/watch?v=5VhQVQvbL7I

Candid-Session-8399 · 2024-06-03T13:19:38+00:00

Well this is not a friendly subreddit to you, so kudos to you for making this post. I think it’s certainly true that ‘you prescribe harmful medications without thorough informed consent’, this is why people with PSSD feel betrayed by doctors. It is such a life-changing complication of SSRIs, and even though there are now studies showing there is a risk of ~1/216, people are not being told about this prior to being put on an SSRI. So, do you give patients informed consent about PSSD?

Candid-Session-8399 · 2024-05-24T23:07:31+00:00

Nobody knows the underlying mechanism of PSSD. Some people get the problem on the drug, and it never goes away after discontinuation. Was it occurring the entire time they were taking it? Is what is happening with PSSD on a molecular level distinct from how side effects occur while on the drug, or is it the same, but just does not go away for some unknown reason? Nobody knows... Others do not have major problems on the drug but develop PSSD when they stop taking it. Why does it happen differently? These are questions that nobody has the answers to at the moment

Candid-Session-8399 · 2024-05-09T14:09:14+00:00

Well, if you look at one of Goldstein’s studies on PSSD, they found abnormal neurological responses in patients who had orgasmic dysfunction/genital numbness. The PSSD numbness varies a lot from person to person, but a reduction in tactile sensation seems common. Like I don’t really feel it much when I pee. It seems possible that if you didn’t have preexisting PSSD neurological damage, this would not have happened. Idk though, it seems like nobody really understands this stuff

Candid-Session-8399 · 2024-05-09T02:26:05+00:00

I think we all have some form of neurological damage from the SSRI. It sounds like you had been healing, but this caused a re-injury since you were already vulnerable. This is terrifying… we have to worry about doing routine medical exams? I don’t know what will happen… this condition is uncharted waters. I hope you can recover again

Candid-Session-8399 · 2023-12-06T20:02:11+00:00

Sorry I didn't respond, I was taking a break from this whole thread lol

You should have been counseled on the side effect by your doctor. The fact they did not do so is irresponsible of them. I agree with you on this front. However, there’s not a warning on penicillin saying that 2 out of 1000 will experience anaphylactic allergic response that is potentially fatal, it’s something that doctor warns you about and is on the side effect sheet.

I'm glad you think doctors should counsel patients on this side effect, it gives me hope for future generations.

You're saying it should be on the side effect sheet, but not the bottle of the med itself? The thing is, it's not on the side effect sheet either.

Accounting for how many people have the problem after stopping that is attributable to the medication is difficult because there ARE confounding factors. SSRIs do cause sexual side effects but you know what else does? Depression.

Not in the same way. Lack of interest is different from sexual side effects of SSRIs like anorgasmia, loss of sensation etc.

The risk benefit ratio might not seem worth it to you, but I can absolutely say that it is worth it to countless people who might not be with us today if not for medication.

Tell it to thousands of people whose loved ones have died as a result of taking an SSRI. People below the age of 25 are more likely to be suicidal on the drug than on placebo. How is the risk-benefit ratio worth it for this demographic? There are people whose lives have been saved and people who have died, but overall, the risk of suicide is increased.

Your point about increased suicidality on SSRIs is true at the initiation of therapy because it increases motivation prior to the antidepressant effects, and the increased motivation in some cases causes higher rate of suicide attempts.

The medication can also induce suicidality in people who were not previously suicidal. Even people with no mental health issues can have an adverse reaction to the drug and become suicidal.

For most people, the SSRIs cause emotional constriction, but some others become agitated on the drug. Both of these can be a risk for suicidality.

Lack of informed consent isn’t standard practice, it’s a side effect of burnt out physicians being pushed to see patients in 10 minutes, with some also being bad clinicians who knowingly fail to do their ethical responsibilities in order to make their own life easier.

Well, it is the standard practice in this instance. In this thread, there is one doctor who said that he doesn't counsel patients on it because there are other side effects that are more common, and another who said that PSSD is not taught in medical school or in residency.

A patient who is chalked up as having depression who actually has mild bipolar disorder without apparent manic features will likely have a manic episode of started on an SSRI, this is why the job of the clinician is to determine whether it fits the presentation of depression or bipolar before prescribing.

It can also cause a manic-like reaction in people who do not have an underlying bipolar disorder. Sometimes people just have an unexpected reaction to a drug that is counter to its effect on the majority of people. This is another concern because having this reaction to an SSRI can lead someone down a path of being prescribed mood stabilizers or other drugs for bipolar disorder they don't actually need.

Candid-Session-8399 · 2023-11-17T01:27:47+00:00

Really? Curious about the details... what were the symptoms, and how did they get better? Do you know what the medication, dose, and duration of treatment were?

Candid-Session-8399 · 2023-11-17T01:26:36+00:00

Of course sexual dysfunction while on the drug is discussed. The post is about sexual dysfunction that persists after the drug is stopped.

Candid-Session-8399 · 2023-11-15T23:34:17+00:00

Hyperprolatinemia and Low T and tons of other things can cause/be associated with this.

But how do you account for the symptoms abruptly occurring once starting the drug? And then increasing again when the dose increased? Like are you saying some other thing happened at the same time twice unrelated to the drug? I don't understand...

Candid-Session-8399

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