Sexual Dysfunction Enduring After Treatment Halts: Sexual-DEATH
Editorial note: This post is written in the first person but there are a lot of voices in here.
Wikipedia stumbles and falls
Wikipedia used to host a valued page on Post-SSRI Sexual Dysfunction (PSSD), a condition which can result from the previous use of SSRI antidepressants. 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). The classic cases 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:
- Buried Alive: Post-SSRI Sexual Dysfunction
- Drugs and Sex Don’t Go
- No Sex and the City
- Treating PSSD
- Accutane: 30 Years of Trading our Sex Lives for Clear Skin
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 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 Sexual-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. It’s 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, its 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
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The Post Finasteride Syndrome Wikipedia entry was taken down by a group or groups with an agenda. The entry met all Wikipedia guidelines. The term “Post Finasteride Syndrome” is used in this peer-reviewed medical research paper.
http://onlinelibrary.wiley.com/doi/10.1111/jsm.12269/abstract
Being struck-down in your youth by one of these medications is dually insulting.
Not only are you doomed to carry-on with your life dealing with embarrassing sexual, debilitating mental, and sometimes even physical side effects, but doctors will often refuse to report or acknowledge your symptoms as a drug side effect because it is supposedly “unheard of”.
Well written article.
I enjoy accutane induced sexual dysfunction 15 months after taking one 20mg pill every day for a grand total of 10 days. Thankfully the other side effects I got have greatly subsided i.e the severe gastric issues, the fatigue and the emotional blunting.
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.
Kevin – I’d also be interested in seeing your papers if you are able to share easily – Good wishes, Jeremy
Please send me all your records. My state raped me with a Jarvis law that forced the drug abilify on me and killed my sexuality. I’m a 32 year old female. Also since trying the drug I have new long lasting episodes of disphoria and emotional imbalance. I have affected for ten months and off all ssri drugs for 30 days.
Brooke
Kevin, I’d be very interested in those documents. Please contact me on wildfaun@gmail.com
I have PSSD since December 2013, after 3 days or more i felt numb down there, this doesn’t changed until this day, it´s very frustrating for anyone live with this condition, and the worse thing is to live with something you that do not know if someday will be reversed and cured.
After 6 weeks of Zoloft (Sertraline) I have been left dealing with PGAD or RGS. This symptom commenced approx 4 weeks after cessation of Sertraline 6 months ago, no improvement as yet.
I am for the first time in my life suicidal.
i also affected with Paxera which is Turkish made SSRI replacement of Paxil. No one believed, my doctor didn’t want to agree it. i don’t know what to do. i was completely ok and there was nothing about my sexual functions.after drug even my penis soft size also reduced. its unbelievable but true unfortunately
I was interested to read your post. I have suffered moderate SSRI sexual dysfunction for a couple of years. Recently this has go a lot worse and like you the size of my soft penis has decreased significantly. It is no. “super soft” and much smaller than it was. I hope there is help somewhere…..
My libido has almost vanished and I have no interest in masturbating anymore.
Good luck to you