Vadevecum of PSSD sufferer - What every member here should do

[sjv16477]

Here a list of concrete action that EVERYONE on this forum MUST do in order to do something of actual concrete to improve our condition. We have to stop to waste time and energy and use it to do something of real useful for us.

Find a doctor that believe you and try some treatments

This is not very easy because doctor are not aware about pssd, so you will nedd to contact some ones to find a pratictioner that believe yu. So you can look on google for universitary doctors because usally are more prone to believe you. In order to don't waste time and money with a doctor not available to help you, you can try to write him a mail telling your story and linking studies, so the he has time to get informed on the issue. Surely for fist he will want to rule out other possible causes, so you will take exams like testosterone, prolactin, nerve functioning and he will want to rule out psycological causes like depression so he will put you on antidepressants like buproprion or psycological sessions. Unfortunately we have to convince them that we are not depressed.
In my opinion improvement of symptoms will not come form supplements but, unfortunately, only from drugs that act on the brain chemistry like some kind of antidepressants, anti parkinsonian agents or similar.

Report to your pharmacolovigilance agency

You must to report your problem to the Pharmacovigilance Agency of your country, in order to bring the attention of pratictioner on this understimated issue. Surely there is an online form to compile and send (in UK it is called Yellow Card). If we don't do this, why scientists and pratictioner should put their attention on an unknown issue, on a problem that they do not know about? Because the main problem is this: for the world outside there we are non existence and pssd doesn't exist.

Update info about PSSD on wikipedia

It is very important that there's a Wikipedia page about pssd in every language, because the first place where people will look for some reliable info on the internet is surely Wikipedia. Students, patients and often also pratictioners look on wikipedia looking for some reliable and updated info. You can look for the Italian wikipedia's pssd page because, until now, is the most extensive. https://it.wikipedia.org/wiki/PSSD

But most important is to link this page about pssd to the Wikipedia ones that speak about ssri and snri: most people that are not aware about pssd hardly will look for it, but a lot of people (people prescribed on a ssri, students etc.) probably will look for ssri and related molecules.
You can add in the "Adverse reaction" section of each SSRIs drug wikipedia's page a brief explanation like this

"SSRIs/drug name can cause various types of sexual dysfunction such as anorgasmia, erectile dysfunction, diminished libido, genital numbness, and sexual anhedonia (pleasureless orgasm). Sexual problems are common with SSRI/drug name. Poor sexual function is also one of the most common reasons people stop the medication.
Occasionally symptoms of sexual dysfunction may persist after discontinuation of SSRIS, this condition is named post ssri sexual dysfunction (link to the page)."

Since the adding (28/12/2016)of this in each SSRIs drug Wikipedia's page, as you can see here https://tools.wmflabs.org/pageviews/?pr ... pages=PSSD the daily visits to PSSD's pages doubled, going from 15 to over 30.

Usually mods of wikipedia are very picky so you have to write it in a scientifically reliable manner, maybe updating the entire "adverse reaction" sections. You can use as template the Italian ones that they were approved by mods (look for the italian wikipedia's page of a SSRI drug).

Get informed about SSRIs dangers, how works and PSSD

We have to convinve people and pratictioners about our problem and discuss about it, so we need to understaind what we are talking about. So we have to study a little of psycoopharmacology, how SSRIs work (and their infectiveness, https://www.reddit.com/r/antidepressant ... _intimacy/).

Write to researchers and doctors

We cannot expect or hope that researchers will bring their interests in a topic that they never heard about: for the world we are inexistent, PSSD doesn't exist and pratictioners and people think that SSRIs cannot cause such damages. You can find researchers potentially interested in studying this condition typing on google

- ""name\city of an university (for example one in your country) + antidepressants\pharmacology departemnt\psycotropic drug research

-going on pubmed and looking for "ssri sexual dysfunction", clicking on the name of the corrisponding researchers it will show you his mail.

I will post a "standard mail" in english to send them, you can keep inspiration from it.

Write to scientist is very important and useful (as Dr. Broberger said in their answer, you can read here http://www.pssdforum.com/viewtopic.php?f=24&t=942). For example, doing this we found Dr. Melcangi that is very interested in study our condition and invited us to complete a questionnaire in order to collect information about pssd (you can find it here https://www.reddit.com/r/PSSD/comments/ ... lan_italy/).

Tell your story to journal and people who can help to spread awareness

I invite you to think about why you are here: you are here because some people that have had PSSD before you preferred to do nothing of useful to prevent new cases and spread awareness instead spend their time and energy to do concrete action. As long as we remain a small group of depressed people closed in a forum, pharmaceutical companies can prevent that PSSD will become a puublic issue, leaving PSSD as a scientific curiosity limited to few unlucky depressed people.
You have to look for scientific journalist in your country, magazines, experts and opinionist on antidepressant, facebook pages that speaks about science and medicine and write them telling, in an scientific reliable manner and linking studies, your story and what pssd is and asking to write an article about this issue. Ghost is doing an information sheet that you can use todemonstrate to skeptical people that pssd is real.
For example we can write to the urologist that have done an article on washington post about finasteride and their sides that is bringing a very large public debate because also trump is taking it (http://www.pssdforum.com/viewtopic.php?f=6&t=966).
Another chance is CCHR, an association that help eople damaged from psychiatry (http://www.pssdforum.com/viewtopic.php?f=24&t=902).

Write to politician and senators involved in public healt

Writing them will surely speed up the process for the official recognition of the syndrome and bring the attention of scientific world, broadcast, magazines and doctors on the issue. Have been submitted questions to senator chamber about antiscientifical and baseless questions like the one about the chemtrails or antivax that brught up a very large public debate, why they should not believe or help us?

Antidepressants are among the most selled drugs in the world, millions of people take them and they move billions of dollars. Think about if every single people will know that antidepressant may kill them emotively, probably no one will want to take antidepressant anymore.
As long as we remain a small group of depressed people closed in a forum, pharmaceutical companies can prevent that PSSD will become a puublic issue, leaving PSSD as a scientific curiosity limited to few unlucky depressed people. But if everyone will start to don't take SSRI anymore, the only thing that pharmaceutical company can do in order to prevent the lose of their goldmine (read the selling of antidepressant) is to find a solution to the problem.
In order to lead scientific world to investigate about PSSD we have to create interest in the topic, trigger a public debate and brought to the attention of citizens and doctors. We cannot do this if we remain confinated into the forums.

Then no excuse, stop to waste time and energy doing unuseful speculation on forums and let's do something of actual concrete.

Here an example of mail to send to researchers

Hi Dr. ***, my name is **** . I'm contacting you because I've read your study where you determined the causes of ssris induced sexual dysfunction\to ask your opinion about an issues whereby I'm dealing\to tell you about a strange and underrecognized condition\... .

I'm dealing with a stressful, strange and unrecognized iatrogenic disease called PSSD and I think you can potentially be very interested in studying it, underling what antidepressants do, in the long term, to a living brain. Studying this condition may be, in scientifically terms, very interesting and may offer, at least, a way to treat this condition.

PSSD (Post-SSRI Sexual Dysfunction) is an iatrogenic disease caused by the use of SSRI or SNRI antidepressant caracterized by deep sexual and emotional dysfunction that arise during the tratment with an SSRI\SNRI (or more rarely when the treatment is discontinued) and persist for an indefinte amount of time (almost always years or maybe forever). This condition is well documented by some studies (that I link below) wich invoke the official recognition of the syndrome, but until now it is totally unrecognized and unknow by almost all physician, psychiatrists and experts. The most common symptoms are loss of libido, erectile dysfunction, tactile anesthesia of genitals and emotional numbness and anhedonia.
I was on sertraline for..... [HERE TOLD PERSONAL STORY]

[YOUR SYMPTOMS]
Since then (FOR EXAMPLE I'm completely impotent (I can achieve erection only by strong and prolonged physical stimulation), my libido is totally absent, the tactile sensitivity of my penis is diminished and in some areas I'm completely insensitive to temperature, I have a deep and annihilating anehdonia. Before this, before to take the drug, I never had any kind of dysfunction.)

[wHAT YOU HAVE TRIED]
Since then, followed by physicians, I tried some differents approaches to try to reverse my condition: FOR EXAMPLE psycological sessions, some drugs like buproprion,***, and some supplements *** but nothing improved my condition\i had improvements. I did this examination *** and everything is ok\I have this problem;

This syndrome has the potential to involve thousands of people all over the world: SSRI\SNRI are one of most prescribed drugs, 13% of people in the USA take antidepressants i.e. millions of people. Furthermore, in my opinion, a lot of people with PSSD doesn't know to have it because almost always psychiatrists say that sexual dysfunction are only due to psycological issues or are due to the age: if these sufferers will not look on google or on english forums for "persistent sexual dysfunction after ssri" they will be convinced that the cause of their erectile dysfunction or lack of libido is due to depression or something similar.

For example in 1 large studies (by Arafa et al.) about the use of SSRI for premature ejaculation is reported that "Sixty-six (66%) of 100 patients [...] experienced relapse of Premature Ejaculation within 6 months after sertraline withdrawal". This seems to mean that 100% of people reported some kind of (in this case desiderable) sexual dysfunction, maybe due to the resolution of psycological issues thanks to SSRI or due to some kind of damage induced by SSRI. We cannot know if the other 34% haven't relapsed because they completely resolved their psycological issues or because some kind of persistent damage. Other 2 studies (by Safarinejad et al.) lead to the same conclusion.

Another study "Sexual dysfunction with antidepressive agents. Effect of the change to amineptine in patients with sexual dysfunction secondary to SSRI" investigated the usefulness of switching from an SSRI to amineptine (a dopaminergic antidepressant with a low rates of sexual sides effects): 55% of people switched from an SSRI to amineptine, after 6 months, still had at least some type of sexual dysfunction. This is compared to only 4% in the control group who were treated with amineptine alone, and were not exposed to an SSRI. This means that SSRI induced some kind of persitent dysfunciton. Did that 55% of people completely recovered with the withdrawal of amineptine?

So I want to ask you if you may be interested in studying our condition ( OR give me some advise or help, OR advise some one potentially interested), until now there are only preliminary assessments but no one is really involved in this field. It could be very important if you will incorporate this new insight into PSSD into your thinking about the results of your next studies. This may help to spread awareness about this unknow condition and lead to the its official recognition.
There's an online community with 4 thousands of people subscribed, how we can contribute to the start of a research in this field or how we can attract the interest of researchers?
If you are not interested, are there colleagues potentially interested in studying this subject? Or at least, can you give me some advise or help for me and other people with this condition?

Waiting for your kind reply,
best regards

Scientific Publications

- Persistent Sexual Side Effects after SSRI Discontinuation, Antonei B.
Csoka, Stuart Shipko, 2006

- Genital anaesthesia persisting six years after sertraline
discontinuation, Bolton JM, Sareen J, Reiss JP, 2006

- Post SSRI Sexual Dysfunction, Audrey Bahrick, 2006 - Prolonged
Post-Treatment Genital Anesthesia and Sexual Dysfunction Following
Discontinuation of Citalopram and the Atypical Antidepressant
Nefazodone, Robert P. Kauffman, Amanda Murdock, 2007

- Persistent Sexual Dysfunction after Discontinuation of Selective
Serotonin Reuptake Inhibitors, Antonei Csoka, Audrey Bahrick, Olli-Pekka
Mehtonen, 2008

- Persistence of Sexual Dysfunction Side Effects after Discontinuation
of Antidepressant Medications: Emerging Evidence, Audrey S. Bahrick,
2008

- Persistent Genital Arousal Disorder in Women: Case Reports of
Association with Anti-Depressant Usage and Withdrawal, Sandra R.
Leibluma & David Goldmeierb, 2008

- Persistent sexual dysfunction in genitourinary medicine clinic
attendees induced by selective serotonin reuptake inhibitors, Farnsworth
KD, Dinsmore WW, 2009

- The impact of persistent sexual side effects of selective serotonin
reuptake inhibitors after discontinuing treatment: a qualitative study,
Rebecca Diane Stinson, 2013

- Does sexual dysfunction persist upon discontinuation of selective
serotonin reuptake inhibitors?, G.C. Ekhart, E.P. van Puijenbroek, 2014
- One hundred and twenty cases of enduring sexual dysfunction following
treatment whit SSRI, Hogan C, Le Noury J, Healy D, Mangin D, 2014

- Penile anesthesia in post SSRI sexual dysfunction (PSSD) responds to
low-power laser irradiation: A case study and hypothesis about the role
of transient receptor potential (TRP) ion channels, Waldinger MD, van
Coevorden RS, Schweitzer DH, Georgiadis J, 2014

- Post-SSRI Sexual Dysfunction: Clinical Characterization and
Preliminary Assessment of Contributory Factors and Dose-Response
Relationship, Ben-Sheetrit J, Aizenberg D, Csoka AB, Weizman A, Hermesh
H., 2015

- Persistent sexual dysfunction after early exposure to SSRIs: Systematic review of animal studies.
Simonsen AL, et al. Int J Risk Saf Med. 2016.

- SSRI induced apathy syndrome, Sansone, Lory

[Ghost]

I like this. Can I add it to my PSSD Lab site? I'd note you as the author on it.

[sjv16477]

Surely! Use it as you want!

[future-recovery]

Good job!

You can look for the Italian wikipedia's pssd page because, until now, is the most extensive. https://it.wikipedia.org/wiki/PSSD

But it seems to include the same nonsense from the previous English PSSD wikipedia site. I have criticized it before:
http://www.pssdforum.com/viewtopic.php? ... edia#p5642
http://www.pssdforum.com/viewtopic.php? ... edia#p6039
I recommend http://rxisk.org/post-ssri-sexual-dysfunction-pssd/ as a template, though also Rxisk's site is not 100% correct or has some unfounded claims (for instance the claim that tapering does not prevent PSSD. But we don't know if there are people who prevented it through tapering) or lacks information (for instance emotional blunting a common PSSD symptom)

you have to write it in a scientifically reliable manner

One should take that for granted, but so many wikipedia articles lack (reliable) sources. One should only publish things on Wikipedia when you have reliable sources.

[sjv16477]

It has a similar template but all sections was have been updated and modified, now is more scientifically reliable and usable. Some info was taken from rxisk other from studies.

[Bigmum]

http://www.pfsfoundation.org/news/clini ... -medicine/

Maybe we can contact with tat reasercher...

[sjv16477]

http://www.pfsfoundation.org/news/clini ... -medicine/

Maybe we can contact with tat reasercher...

I wrote him!

[Bigmum]

And he hasn t respond

[sjv16477]

No most of them have not answered or said that cannot do research because they are not involved in the field of antidepressant, advising to contact researchers more involved in this field.

People from US send your report to FDA using this module https://www.accessdata.fda.gov/scripts/ ... rting.home

[sjv16477]

It is very important to have a Wikipedia Page about pssd in english. Is there any english native speaker interested in doing it translating the italian one that until now is the most extensive and reliable all over the world and it is approved by moderators?