Diagnostic Criteria for Enduring Sexual Dysfunction
Background
We noticed that a lack of diagnostic criteria was increasingly being mentioned in the published literature on post-SSRI sexual dysfunction (PSSD). The condition was being described as difficult to diagnose because there was no commonly accepted definition.
At the same time, a number of new websites and online discussions were appearing, many of which seemed to have slightly different interpretations of what is and isn’t PSSD.
Although the condition had already been well characterized in the literature, particularly in relation to the hallmark features of decreased genital and orgasmic sensation, there seemed to be a need for a formal set of criteria. We decided to write a new paper.
RxISK was the first group to publish peer-reviewed literature on persistent sexual dysfunction after the use of isotretinoin, a medication used in the treatment of acne. We have also described commonalities between post-SSRI sexual dysfunction, post-finasteride syndrome and post-retinoid sexual dysfunction. It therefore seemed logical that we should include all three conditions as well as persistent genital arousal disorder which presents with an almost mirror image of genital arousal or irritability rather than numbness.
Get your free copy
We are pleased to announce the online publication of “Diagnostic criteria for enduring sexual dysfunction after treatment with antidepressants, finasteride and isotretinoin“.
You can view and download the pre-press version on the above link. There are a few small formatting errors from the publisher which will hopefully be corrected in the printed version when it comes out, but the article is still perfectly legible. [Now updated with printed version.]
It provides diagnostic criteria for:
- post-SSRI sexual dysfunction (PSSD)
- persistent genital arousal disorder (PGAD) following serotonin reuptake inhibitors
- post-finasteride syndrome (PFS)
- post-retinoid sexual dysfunction (PRSD)
Writing the paper, getting it published, and being able to make it freely available has required a lot of work. It’s also been our most ambitious collaboration to date with 37 authors.
The journal would normally charge $27.50 USD to access the full paper unless you are a subscriber. Another option is to pay €1250 for open access which makes it free for everyone to view and download. We contacted all of the authors and suggested that if we split the open access cost equally, each person would only have to pay a relatively small amount. While many of the authors agreed to contribute, there was a shortfall of around €300 which RxISK has covered.
Feel free to share the paper with anyone who might be interested.
Doctors, literature & media articles
We have a number of other PSSD related resources on our website that you might find useful including a list of academic literature and media articles.
There’s also an international list of doctors who are familiar with the condition. At the moment, this list contains 16 doctors across 9 countries, but we need your help to find more.
If you’ve had experience with a doctor who might be suitable, could you ask if they would be interested in being on our list. If they are, please provide us with an email address so we can contact them. Alternatively, they can send us a message via our contact page.
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My heartfelt thanks to the 37 authors of this important article for deciding to give everyone this gift !!!
Professor Healy, Thank you for ensuring that this important, valuable and patient centred publication is available: open access.
I am certain that those who follow your invaluable work will be sharing widely.
Congratulations, and thanks to all who have contributed.
Thank you for your work.
The federal government quietly acknowledged the rare risk of PSSD in a January report that followed freedom of information requests from Emily and other advocates, as well as reports of adverse events collected by experts at the Rxisk platform.
https://thetyee.ca/News/2021/11/02/Something-Sacred-Has-Been-Taken-Away/
But he’s worried that without expanded access to clinical trial data and better monitoring and treatment of PSSD and other rare side-effects, critical research is “up against a religious belief system” that sees prescription medications as sacraments rather than flawed solutions.
Cassels agrees. Writing a prescription, he says, satisfies both parties: it’s quick and doctors feel as though they helped someone, and patients feels as though they were heard and now have a solution.
But given that “every medication with an effect has a side-effect,” Cassels says medicine needs to get better at exploring non-pharmaceutical options when appropriate to mitigate the risk of side-effects.
If knowledge of side-effects and risks has a chilling effect on SSRI uptake, or other prescriptions for that matter, Cassels says “so be it.” “I think most people would want to know a drug could cause serious sexual dysfunction before they take it,” he said.
But making these shifts in mindset and policy will require government to legislate reporting standards and greater transparency from pharmaceutical companies. “They’re only going to do it if they’re forced to do it,” Cassels noted. “It’s in their interest not to focus on adverse risks more than they have to.”
Thank you to RxISK for your immense support and contribution to those who suffer from post-SSRI sexual dysfunction (PSSD).
I would also like to take this opportunity to thank all those people who come to RXISK and share their journey of tribulations with us.
It is indeed, very humbling to know that RXISK is doing so much to educate the populace about this debilitating condition.
Keep up the good work!
Thank you!
Medscape UK has an article today (21st Dec 2021) entitled: More Cautious Antidepressant Prescribing Needed by Doctors. It mentions sexual difficulties just once (which is better than not at all).
https://www.medscape.co.uk/viewarticle/more-cautious-antidepressant-prescribing-needed-doctors-2021a1002mh1
However, it does link to a review published in the Drugs and Therapeutics Bulletin this month by Mark Horowitz and Michael Wilcock, Newer generation antidepressants and withdrawal effects: reconsidering the role of antidepressants and helping patients to stop. This review mentions this side effect more often but makes no attempt to describe it. Though it does reference DH’s paper Antidepressants and sexual dysfunction: a history. J R Soc Med 2020;113:133–5
I would imagine ever doctor is currently having to absorb an O’levels worth of new information every quarter and don’t have time to read anything other than a small fraction of what is being published. Well, together with this new Diagnostic Criteria it looks like this info needs to be hand-delivered in person.
Pogo – fortunately the article you refer to is freely available online here:
https://dtb.bmj.com/content/early/2021/12/13/dtb.2020.000080
Drug and Therapeutics Bulletin “D&TB” has long had a good reputation for providing expert opinion; I think it is relatively immune to political influence.
One of the problems that currently need to be addressed in the UK is the fact that a lot of hospital psychiatrists (in both adult and child subspecialties) are locums (i.e.temporary). They commonly will start a patient on additional medication and arrange for the patient to return in six months for review – when they will no longer be there. And then they see another locum, and the process repeats itself. Sooner or later the patient will be on more than one drug linked with Enduring Sexual Dysfunction.
Mark Horowitz
@markhoro
https://www.bbc.co.uk/sounds/play/m0012qxb
(From 2:52)
with Sir Simon who schooled me in media prowess (but not EBM interpretation)
Times (paywall): https://bit.ly/3stUmv7 17/n
Stop dishing out antidepressants, doctors told
Kat Lay, Health Editor
Tuesday December 21 2021, 12.01am, The Times
Doctors should prescribe fewer antidepressants and for a shorter time, experts said, after a review found no strong evidence that the drugs were effective.
The benefits of the medication were uncertain but many patients had side effects and withdrawal symptoms, which could be severe, researchers said.
https://podfollow.com/1480398327/episode/d8f4ee4ab139f22491bde3f4654d4cf6c9312fdd/view
https://www.dailymail.co.uk/news/article-10331035/New-study-suggests-considerable-uncertainty-benefits-antidepressants.html
https://twitter.com/markhoro
Mark Horowitz
@markhoro
·
Strong agree! I was too polite and let Sir Simon trot out a highly flawed study that mistook withdrawal for relapse https://bmj.com/content/374/bmj.n2403/rr-4… Schooled on media savvy, but not EBM
Just as Mark is disabusing Simon of the limitations of the ‘Antler’ Study, so he is curtailed by something called – ‘Part Liberace’ –
James Moore
@jf_moore
Wow, an almost carbon copy, you have to admire the consistency if nothing else!
https://twitter.com/jf_moore/status/1474044625820209161
Letter in @thetimes response to @markhoro ‘review’ of antidepressants.
There is going to be a heck of a lot of withdrawal and tardive akathisia. A elderly relative was put on Citalopram 10 years ago and only now at age 80 is being told they have to come off it due to potential heart problems. At the time I informed them of the prolonged QT interval risk and the warning letter GP’s had been given. Didn’t listen to me – doctor knows best.
Can only hope some people pay attention to this –
https://www.change.org/p/provide-tapering-strips-to-help-people-withdraw-from-antidepressant-and-antipsychotic-drugs
Danish article on SSRI sexual dysfunction published in April 2022 has a paragraph on PSSD, but unfortunately failed to mention the Diagnostic Criteria: https://ugeskriftet.dk/videnskab/seksuelle-bivirkninger-ved-ssri
” Post-SSRI syndrome
A few patients experience persistent sexual dysfunction after discontinuation of SSRI treatment. The incidence of the phenomenon is unknown but probably low, and knowledge is based on case reports. Decreased genital sensitivity is the central symptom and may apparently occur shortly after the first SSRI dose. In addition, the most frequent symptoms are decreased sexual desire, erectile dysfunction, decreased lubrication, limited or no orgasmic experience, premature ejaculation and decreased nipple sensitivity. Symptoms occur during SSRI treatment and in some cases worsen further when treatment is discontinued [29]. There may be fluctuations in the severity of symptoms, and a proportion of patients experience spontaneous remission over time, but the syndrome may persist for several years [30]. There is wide variation in the presentation of the syndrome and as yet no clear diagnostic criteria. The etiology of the problem is controversial. Theories for the underlying pathophysiology include epigenetic downregulation of the 5-HT1A receptor, serotonergic neurotoxicity with axonal damage, hormonal changes in both the central and peripheral nervous systems through interaction with dopamine, testosterone and oxytocin, and disruption of transient receptor potential channels with implications for skin sensitivity [29].
There is as yet no effective treatment for the syndrome. However, cognitive behavioural therapy and sexological counselling can often improve coping and relieve symptoms [29].
In 2019, the syndrome was recognised by the European Medicines Agency, which recommends that all patients be informed of the risk of treatment-induced persistent sexual dysfunction before starting SSRI treatment [30]. “