Sexual Dysfunction Enduring After Treatment Halts: s-DEATH

Editorial note: This post is copied from RxISK Stories where there will be 5 posts this week on aspects of Enduring Sexual Dysfunction after treatment, covering the issues below. 

No Sex Please! (We're on antidepressants) ©2014 Billiam James

Wikipedia Stumbles and Falls

Wikipedia used to host a valued page on Post-SSRI Sexual Dysfunction (PSSD). On January 27th this was taken down.  A Post-Finasteride Syndrome page has also been taken down.

  • On Tuesday we will host the original Wikipedia page – Wikipedia Stumbles.
  • On Wednesday we’ll host the debate within Wikipedia about taking this page down – Wikipedia Falls.
  • On Thursday we plan to run an account of the closely related Post-Finasteride Syndrome.
  • On Friday we have an account of the equally closely related Post-Isotretinoin Syndrome.

This set of 5 posts should make it clear that Wikipedia, for whatever reason, have made a terrible mistake. Once you meet a person who has the condition, there is no doubting its reality. I saw my first case of PSSD 15 years ago and since then have met 20 or more people with it and corresponded with an ever growing number.

There is a striking consistency to the clinical picture across sufferers affected by SSRIs, Finasteride (Propecia) or Isotretinoin (Accutane). All have profound erectile or lubrication dysfunction, severe loss of libido, an inability to orgasm, and a weird and disturbing genital numbness.

The problem can start as early as a week after exposure to the drugs. Once established, it appears for at least some people to last forever – certainly 5 or 10 years is commonplace.

A community has been affected that includes healthcare professionals, scientists, researchers and others as talented and motivated as the AIDS community have been and they have put as much effort into finding a cure as AIDS activists did.

Those affected by SSRIs have researched drugs that might tweak the serotonin system in almost every conceivable way or drugs that act on systems interacting with the serotonin one, like the dopamine system. They have tried all the standard treatments like Viagra. But nothing works.

Those affected by Finasteride have tried more endocrine approaches but nothing works. They have raised large amounts of research funding and through the Post-Finasteride Foundation are exploring the issues thoroughly.

The Most Commonly Reported Syndrome

Struck by the issues, RxISK has run a series of posts on these syndromes. Check out the comments:

We have had more completed RxISK reports on this condition than on any other – over 120 to date and counting. We have had several volunteers trying new treatment options including ketamine, donepezil and metformin with no success to date but we are trying other treatments.

Finding an Answer

Finding an answer is important because this is such an horrific condition. It doesn’t just cause genital numbness, it gives emotional numbing also – and can lead to a profound apathy that blights every aspect of life.

Ascetics and mystics advocate a disengagement from the passions for anyone who wants to achieve a proper balance in their life. But S-DEATH  doesn’t bring peace. It profoundly disturbs the spirituality of anyone suffering from it. Far from offering balance, it brings with it a deep sense of pointlessness and aimlessness. It is more like going blind or deaf on treatment – we lose one of our vital senses – a sense for others.

Very few mystics or ascetics have ever advocated being blinded, or deafened or irreversibly cut off from the world in this way. Losing out on the possibility of falling in love means losing out on something that can change a life’s direction completely – one of the most important ways to find out about who we in fact are.

Sexual-DEATH not uncommonly leaves death by suicide, marriage break-up, job loss and other serious problems in its wake.

One of the great unknowns is what happens to young people before or early in puberty who might never know what they have lost. Its chilling to get queries from people in their teens who may have only been briefly exposed to the drugs – who ask when the problem is going to clear up.

The most important reason to find an answer is that all of the drugs that cause Sexual-DEATH cause birth defects also.

Are you Affected?

We’ve said the classic or end stage syndrome involves an almost complete shut down in function. This is like going blind of deaf. If you’re blind or deaf its easy to take the problem to the doctor even if she doesn’t believe you.

But if a drug can make you blind or deaf it doesn’t make sense to think that its all or none. It’s likely there are gradations of the problem. Some people will suspect their sight or hearing isn’t quite as good as it was but they may not be sure. Others may think they have fallen out of love with their partner – leading to collateral damage.

For women, it’s probably even more likely that they or their doctor will put minor degrees of change down to a social or a  psychological factor rather than to the drug.

One of the possibilities is that almost everyone who takes an SSRI, Propecia or Accutane is affected to some extent. Rather than absent orgasm, they have muted orgasms. Everything works but just not as well. They wonder if they are imagining it. Or if this is something to do with aging.

Take one Paxil, Lexapro, Cymbalta or Pristiq and see what you think.

SSRIs work within 30 minutes to numb. This is the most obvious thing they do. It makes them useful for a real problem – premature ejaculation. Given vigorous company marketing of Viagra, Cialis and Levitra for erectile dysfunction, why were SSRIs never pushed for premature ejaculation?

Editorial Note: We need good acronyms to cover the problem rather than the drug

  • Sexual-DEATH is an acronym that covers all the 3 syndromes we cover in the next few posts.
  • PTSD – Post Treatment Sexual Dysfunction – is an option but it may be impossible to steal this one.
  • PSSD and PFS seem likely to stick.
  • Post-Isotretinoin Sexual Syndrome – we introduce PISSed off on Friday

Illustration: No Sex Please! (We’re on antidepressants). Based on 17th Century Kama Sutra and Ragamala paintings. © 2014 created by Billiam James.

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  1. There has been one SSRI-type drug marketed for premature ejaculation: dapoxetine, brand-name Priligy. It’s never quite got FDA approval in the US, but it looks like they are still trying … it may have been licensed in some other places. It’s claimed to be “rapidly absorbed and eliminated”, providing all the benefits of an SSRI and none of the drawbacks.

    The authors also claim that “Pharmacotherapy of PE with off-label antidepressant selective serotonin reuptake inhibitors (SSRIs) is common, effective and safe.” I wouldn’t bet the farm on it …

  2. When it comes to this area all I can say is i’ve been left ‘Helen Keller-ed’, sadly doctors are just as incompetent perhaps even more so today than they were decades or even centuries ago!

  3. “Once established, it appears for at least some people to last forever”

    There is not one single story of a cure. PSSD seems to last forever, for ALL people.

  4. Thank you, thank you, thank you… for helping us get the word out. I am one of the sufferers of Post SSRI Sexual Dysfunction. We need to be heard loud and clear. Thank you for listening and shouting along with us!

  5. The Medicines and Healthcare Products Regulatory Agency Are Ignoring Their Data On PSSD.

    I have had PSSD in the form of Impotence for the last 18 years following a brief period of Prozac just after my 18th birthday, becoming impotent after beginning Prozac and having since never had a proper erection to this day. Following numerous medical tests Doctors have attributed my impotence to the Prozac I took in 1996. I reported the persistence of my Prozac induced impotence to the MHRA using the Yellow Card Scheme but my report was not acknowledged.

    Years later, in 2008 when PSSD had become more widely known about and studies into the persistence of PSSD had begun to be published I began writing to the MHRA. Initially they informed me of a mere 83 Adverse Drug Reaction reports of SSRI-induced sexual dysfunction with 8 of the reports being of sexual dysfunction persistent after discontinuation. After I pressed them further, and they changed their database search criteria they came back with a figure of over 1000 reports of anti depressant induced sexual dysfunction with over 200 being persistent, and over 100 persisting at the time that they were reported to the MHRA.

    Through persistent Freedom Of Information Act requests I`ve got Sarah Cumber, Pharmacovigilance Information Co-ordinator to make the very damning admission that the MHRA have no record of following up the 940 reports of Adverse Drug Reactions of SSRI-related sexual dysfunction they received prior to June 2006 when they claim a change to their database resulted in this information being lost.

    Leaving aside how pathetic and unbelievable an excuse this was, surely it should be expected that the MHRA would have done whatever it could to retrieve the follow up information on these reports of adverse drug reactions? Once the change to the database had occurred shouldn’t they have been doing all possible to contact the patients who made their reports to record the outcome of their adverse drug reactions?

    Well the MHRA didn`t. It took them over 4 years following the alleged loss of follow up information, to by August 2010, follow up any of the reports and it was only in response to my ongoing Freedom Of Information Act Requests probing into their follow up on reports of PSSD that the MHRA made any attempt to retrieve this information.

    The MHRA stated that in August 2010 they chased up only 32 of the 940 Adverse Drug Reactions received prior to their database change of whom none responded. I do not find it plausible that 32 patients who went to the effort to report their sexual dysfunction via the Yellow Card Scheme would ignore correspondence from the MHRA enquiring into the outcome of the adverse effects that they reported.

    Despite that the MHRA had to admit that they retain contact information for 892 of the 940 patients who made their reports prior to the alleged loss of follow up information, the MHRA has refused to contact any more of them.

    In summary the MHRA`s performance in relation to PSSD is as follows, and I will be happy to send the documented evidence of this to anyone who requests the information;

    The MHRA have no record of following up any of the 940 reports relating to SSRI induced adverse sexual effects received prior to June 2006

    In August 2008 they initially informed me that they had received only 83 reports of Adverse Drug Reactions relating to SSRI induced adverse sexual effects and assured me that the matter was under “close review”.

    Only by August 2010 did they follow up any of the adverse drug reaction reports which they now admit were 940 in number, and they followed up only 32 of them claiming none responded.

    In their most recent response to my Freedom Of Information Act request dated 8th November 2013 the MHRA admitted that out of 1220 reports of SSRI Induced sexual dysfunction received, 266 of the reports were of adverse sexual effects that persisted after the patient stopped taking the drug.

    Despite that 1087 reports contained the Patient`s contact information, to date only 117 have been followed up and this number of follow ups has been achieved only through persistent information requests and efforts to keep account of their responses to adverse drug reaction reports.

    The MHRA remain unprepared to provide even a precautionary warning regarding the persistence of SSRI-induced sexual dysfunction and in spite of all the overwhelming evidence, have never been prepared to refer to the persistence of SSRI induced sexual dysfunction as anything more than a “potential signal” as to a symptom of the medication.

  6. I have to wade in here because I think it is relevant to this discussion.
    It is so morally wrong.

    Do we really expect anything else from our MHRA?
    You have to wonder what they actually do, under the direction, of Ian Hudson, ex Glaxo Safety Officer…just file away all complaints, with not a lick of a promise?
    A Filing Officer is not what we want from Our MHRA

    Back to Statins, for one moment.
    Professor Colin Baigent, Co-author of a pro-statins study wrote today in the National Press where two opposing arguments were put forward.
    The more credible was by Dr. Aseem Malhotra who ended his lengthy opposition to saturating us with statins by saying – whatever, NICE says, you won’t need those statins at all.

    Prof Baigent said:

    “taking a statin leads to just one in 10,000 people experiencing *such problems* and surely it’s better to take this very small risk in return for the much bigger chance of avoiding a potentially fatal heart attack or stroke?

    Do, the math, 65 million of us live in the UK, divided by 10,000?

    So, poor Joe Soap, who is the 1 in 10,000 has to live with his life jeopardised because Prof Baigent has given the most contemptible disregard for human life.

    “As for the suggestion that the only people who will benefit from the wider prescription of statins are the share-holders of the pharmaceutical companies, this is looking at things the wrong way round”.

    “NICE is simply recommending that a wider range of people should be offered the opportunity to take them if they wish.”

    We have all been victim to doctors pushing on us drugs that we would rather not have. We don’t sit in the exulted position of a doctor having *the knowledge*.
    We sort of trusted them and so I would say that when a doctor gives a patient an opportunity, he is not, in, fact, doing that at all.
    We do not take them, if we wish.
    The patient is in a position where it is almost impossible to say no.

    Compare this to anti-depressants:

    If this same argument applies, as to the statin one.

    The doctor gives you the opportunity to take an anti-depressant, if you wish.

    If, statins, are giving us a 1 in 10,000 “risk of diabetes, liver problems and bleeding into the brain and other acknowledged side effects of statins but, again, the risks of developing these are small and far out-weighed by statin’s benefits” he says, then a doctor giving you the opportunity to take an anti-depressant is hopeless in the way Prof Baigent presents it.

    There was talk of anti=depressants causing some, if you wish, to commit suicide.
    1 in 10,000. 1 in 100,000. 1 in 1,000,000.

    Obviously, Professor Baigent has his numbers skewed, his argument skewed and his whole philosophy of medication skewed.

    Once, again, Joe Soap is either dead or suffering from a miserable life in a vortex.

    Kevin, a wonderful account of how you, so easily, showed up the MHRA for what it is and I so hope that you regain what it is you want to get back.

  7. I remember that the SSRIs did cause sexual disinterest for me while I was taking them (mostly because they created such unpleasant side-effects, no sex was the least of it in my experiences…they caused me to harm myself!) Other drugs can certainly impact ones sex life too I’ve learned. In 2006 after a forced hospitalization and being given a combo of various psych drugs including Geodon my sex life came to a sudden permanent halt. I have too much discomfort in my hip area to assume any position for sexual intercourse. The hip pain began in the hip that received an unwarranted tetanus shot at the ER before I was hoisted away to the mental health facility. One med that had been prescribed by the psychiatrist in charge who I had been seeing was a benzodiazepine. As I had experienced previous adverse reactions to that class of drugs, they probably should never have been prescribed again. But they were and the result was this forced hospitalization. Now, the odd part is that the offending drug was never withdrawn or recognized as the culprit affecting my thinking even though I documented having adverse reactions to benzos and my time there was not utilized for in-house tapering of an addictive drug, but rather used to load me up with more meds that my system could not tolerate. At one point, I fainted and was roused enough to be walked back to my room where I slept for several hours. I remember experiencing a slight full body tremor, or convulsion during that sleep. I’ve often wondered if perhaps it was some type of stroke. All I could do was go along with treatment; otherwise, I would have been judged “non-compliant” and not released. They did release me soon after I asked my husband to bring me a cane because I was having trouble walking there. I had committed no crime that brought me to the ER or this mental health center. Yet, I was forced to stay and consume drugs that I know were harming me. One drug that was administered was a blood pressure medicine that had already been discontinued because it was discovered earlier that summer that I was suffering from “white coat syndrome.” I have never encountered such disrespectful buffoonery masquerading as “health care” within written books of science. They inflicted harm, billed my insurance, I still suffer from their treatment to this day, and they continue to solicit funding for their “services.” Sometimes I wonder about the state of American health care these days. Or is it just Ohio? Thank you for allowing me to share my story.

  8. This story of sexual dysfunction on SSRI’s may be an anecdote – but it’s pretty compelling: In Israel, leaders of a small ultra-Orthodox sect have apparently worked with psychiatrists to get members of their flock on SSRI’s, strictly to suppress their sex drive. Teenage boys in religious schools were their first targets, but married men and women have also been steered to the “right” doctors and pressured to take these drugs.

    I ran across a mention of this in a Valentine’s Day-themed article in New Scientist, on the ethics of treating the “lovesick” with drugs, but thought it could be just a rumor. This article in the Israeli daily Ha’aretz confirms it:

    Some of the doctors actually justify their actions by pointing out how tough it is for people to experience urges that are at odds with their community’s official values and lifestyle. This in itself could lead to serious depression, they argue, if doctors don’t step in to help them manage. It’s a pretty chilling apology for social control, and one which could expand outside the religious context all too easily.

  9. Johanna:

    That case only proves sexual dysfunction while on the medication. No one disputes that.

  10. Thank you for mentioning PSSD, David.

    It’s been 2 years since I stopped venlafaxine and mirtazapine and I have ED, genital anesthesia and less pleasurable orgasms.

    Do you have any theory regarding PSSD’s etiology and how could it be reversed?

    I invite you to visit , maybe it could help you with your research.

  11. I took 3 pills of Paxil 10 Mg. I now have no emotions, blunt affect. I never get excited. I have lost interest in everything. It’s not depression… its a blankness that invades everything. I wish i was depressed… then at least I would feel something. Obviously the paxil has atrophied my brains need to produce serotonin. And yes I don’t feel love or arousal. I met my ex-girlfriend a week ago for coffee. I hadn’t seen her in 4 months. This was the girl I hoped to spend the rest of my life with. And I felt nothing. If being in a situation like that can’t jupstart my serotonin, nothing can. I only took 3 pills. I am facing a permanent change in who I am now. This drug is criminal… CRIMINAL. Paxil took my life away. Now I am a shell

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