RxISK Research on PSSD

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July 18, 2014 | 28 Comments

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Editorial Note: This post is written by James Bennett, who is co-ordinating the RxISK PSSD research effort.

Over the last two years, RxISK has engaged in a number of activities to raise awareness of Post SSRI Sexual Dysfunction (PSSD) and try to help those affected. Several articles have been posted on “RxISK Stories” and circulated via Facebook, Twitter and the monthly newsletter. These include Buried Alive, Drugs and Sex Don’t Go, If a Drug caused Blindness, No Sex and the City, Treating PSSD, Sexual Dysfunction Enduring after Treatment Halts.

Earlier this year, Wikipedia took down its PSSD page – See Wikipedia Stumbles, Wikipedia Falls. In response we restored the page on RxISK and have now restored it to Wikipedia. We invited people worldwide to construct a Wikipedia page in their language and we are hopeful there will be a Chinese PSSD page soon.

We also e-mailed information about PSSD to magazines, health support groups, psychosexual counsellors, doctors, legal firms, as well as the media in the UK, US, Canada, Australia, New Zealand, and Denmark.

Research by the PSSD community

RxISK has also been actively communicating with members of the PSSD community, to try to find medications that might help. For instance recently a Dutch PSSD group has been able to get PSSD recognized within the Dutch regulatory apparatus – see Lareb.

We recognize the work of other pioneers who, prior to RxISK, have been instrumental in putting PSSD on the map. A number of papers have been published, which have helped to define the condition’s features through case reports, as well as offering hypotheses on the possible underpinnings of the condition.

Doctors in clinical practice are slowly becoming aware of the problem, particularly those who are tasked with trying to help sufferers, such as urologists. They don’t always have a full understanding of the condition, and may not actually have heard the term “PSSD”. Nevertheless, they are beginning to recognize and diagnose prolonged sexual problems as a direct result of previous SSRI use. Sadly, this awareness does not appear to extend to prescribers, who continue to prescribe SSRIs without informing patients of the risks.

Sufferers have approached their condition in several ways. Some choose to pursue positive thinking and a healthy lifestyle, while others try medications and supplements. However, the one issue that seems to unite everyone, is the need for proper research.

Without this, patients and doctors alike are working in the dark. Unfortunately, the majority of scientific medical research is funded by pharmaceutical companies. This obviously presents a challenge when dealing with a condition caused by medications.

Since SSRIs were first marketed more than 25 years ago, there is still no active research into PSSD, anywhere in the world.

Until now…

RxISK research

We are pleased to announce that RxISK will be setting up the world’s first scientific medical research into the neurological correlates of PSSD in human subjects. We will be using MRI-based neuroimaging including functional MRI (fMRI) to investigate various aspects of the condition.

The project is being supported by Cardiff University, Wales, UK, which is where the testing will take place.

Please note that this research only relates to problems caused by SSRI antidepressants, and not to related conditions caused by Finasteride and Isotretinoin, which have also previously been discussed on RxISK.

How can I get involved?

We need two things – participants and data. At present, we will only be able to accommodate a limited number of participants. However, we need as many potential candidates to chose from as possible.

We know that PSSD not only varies in severity, but also in symptom profile. For example, some people have profound genital anaesthesia and complete lack of function, while others are able to function, but can’t feel anything. Then, there are those for whom everything works, but just not as well as it should. Add to this the fact that medication histories can be complex.

A large pool of potential candidates offers more scope to test specific profiles. It also means we can more easily look for commonalities and differences. The more candidates that we can chose from, the better chance we will have of obtaining meaningful results.

Anyone who does not want to participate, or is unable to, can still help. We need data – Details of people’s experiences, things that have helped, things that haven’t, medical tests that people have had, etc. The more patient reports that we can collect, the better.

We have put together a framework, which includes a number of potential tests and approaches that we plan to pursue, covering various aspects of PSSD. However, we still have the ability within this framework to adapt the project, depending on the profile of volunteers and patient reports that we collect. For example, we could pursue any additional leads that come to light, and change aspects of our testing accordingly. There is also the possibility to expand the project even further, depending on the level of response that we receive from interested participants.

Who has PSSD?

PSSD can loosely be defined as the failure to return to a pre-SSRI state of sexual functioning, after the discontinuation of SSRI antidepressants.

Some people develop sexual problems on the drugs which don’t completely resolve when they stop. For others, these problems don’t develop until they actually stop the medication, or reduce it to a very low level.

As the condition can vary in severity, it is likely that many people with PSSD don’t even realize they have it. They may notice that their sexual function isn’t quite the same as it used to be, but might think they are imagining it, or that it has something to do with ageing. They might think they are just no longer as interested in their partner, or perhaps their doctor has convinced them that it must be a social or psychological issue. Once a person has stopped taking a particular medication, they wouldn’t expect it to still be having an effect, and would likely look elsewhere for answers to any continuing problems.

As low libido can be one of the symptoms, it seems reasonable to suppose that some people would be unaware of the extent of their sexual problems, since they would be less likely to pursue or engage in sexual activity.

PSSD can include non-sexual symptoms as part of the condition, such as brain fog and emotional numbing. We would like to hear about these or any other additional symptoms that people are experiencing.

We would also like to hear from anyone who has seen improvements in their condition, either partially or completely.

RxISK needs your support to get the most from this project. If you are affected by PSSD, please report your problem to us, and let us know if you would like to be considered as a possible research candidate.

Comments

  1. Excellent news. This is a great opportunity for the PSSD community to find a scientific basis for the condition and possibly the first steps to finding a successful treatment.

    Is there specific contact method or email address through which PSSD patients can direct their questions or offer their participation?

    Reply

  3. Great news. have already submitted my symptoms and personal profile via yellow card and on RXISK, I would very much like to be apart of the research.

    Reply

  4. I’m praying for you find an answer, Dr. Healy. Ι am suicidal every day,every minute. PSSD , emotional blunting and anhedonia (very often relative) is HELL!
    I believe that genital anesthisia (the most characteristic and valid symptom of this terrifying condition) is the worst symptom by any other from all diseases.
    You are ours biggest hope.

    Damn SSRI…

    Reply

  7. Have there been any thoughts about testing Fenclonine (PCPA) in the treatment of PSSD? It depletes serotonin and has had a fair amount of research into its sexual effects, which include hypersexuality. It looks like it can cause (or at least exacerbate) migraine headaches, as well as depression, but it’s at least theoretically possible that it could cause a permanent reversal of the symptoms of PSSD (e.g. via resensitization of serotonin receptors in the brain).

    Looking around, there hasn’t been much in the way of testing this with patients suffering sexual dysfunction from SSRIs, probably because a lot of the existing research is on patients *currently* taking an SSRI, and Fenclonine would probably eliminate the antidepressant effects of the SSRI. However, for patients who’ve already terminated their SSRI (and are no longer depressed), that might not matter as much.

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  8. As a victim of SSRI destruction, one thing I don’t understand is the amount of time these drugs take to have an effect. If I think of other brain affecting drugs, caffeine, nicotine, alcohol, LSD, cocaine, amphetamine, cannabis, or whatever, surely, they enter the bloodstream, cross the blood brain barrier, react with one’s own brain chemistry and bingo you have the effect; followed by one or a few days for your brain to self regulate back to normality. (Obviously long term use of such drugs can have a far more damaging effect). What the hell is going on with SSRIs? You take them, they enter the bloodstream, cross the blood brain barrier and then what? What is happening in all those weeks before the drug takes full effect? Surely the only thing that can be happening is some physiological change in the brain in reaction to the presence of the drug? Now if that is the case, can one expect such a change to reverse back to its pre-drug state once the drug is withdrawn??? Or would it be more reasonable to hypothesize that the brain has been permanently changed and that is why, once one has taken SSRIs, one is destroyed forever? Serotonin function burned out, unable to feel attraction, desire, lust, goal direction and ambition, or even love. Leave someone like that and they are pretty much permanently screwed in every aspect of life. Taking a drug and observing or experiencing its effects are one thing. Stopping a drug is another thing entirely and you never know what a drug has really done until you try living without it and compare how you are then to how you were before you ever took the the brain damaging, life wrecking, soul destroying poison in the first place.

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  9. David Healy Rocks!!!!!! Thank you doctor Healy. Maybe I can contribute with my empirical and my self treatment that healed me.
    PS: I had the worst type of post ssri sexual dysfunction. I could not had even a single erection for almost 8 months and now after 3 years of this nightmare I’m doing very good!!!! I’m doing a lot of sex again. I want to help the others guys and girls.

    Reply

  10. Hello Augusto, please specify in your testimony whether or not you had low testosterone and / or high prolactin, and if you’ve taken care of these hormonal imbalances to heal from PSSD. because would it be different for PSSD suffers that have no hormonal imbalances. sorry for this english.

    Reply

    • I took a lot of things and I do not think that the testosterone was the problem, at least in my case. My theory is that it is a problem in the cyp (cytochrome P450), mainly in the cyp2d6 and cyp3a4 and some people will need to “fix the cyp” enzymes. One very good thing for it is desmodium(burbur), MSM and Zeolite.

      Reply

  11. I have had PSSD since I stopped taking citalopram in July 2014. If I had read the Wikipedia article about citalopram prior to taking the drug, I would never have taken it!! I hate the doctor who prescribed me it. I have tried taking licorice root – I found posts online claiming this can eliminate PSSD, but I have yet to see any benefits. I also had a testosterone test, and it came back normal. I do not want to have PSSD for the rest of my life. Sometimes I feel suicidal, but I have to stay positive. I hope a cure will be found or that I will get back to normal through time. Any other ideas of potential benefits?

    Reply

    • Meg
      The first step is to file a RxISK report. The ideal next step is to take it to your doctor and let us know how s/he responds – whether she listens or not. If she is open to the drug causing the problem having her work with you and us would be great. We will put you on our database and be in touch to let you know more soon.
      David

      Reply

  18. I have the PSSD. I stopped taking Cymbalta in December 2014, but i feel genital anesthisia and ejaculatory anedonia. I’m afraid that i will have PSSD for the rest of my life. I’m desperate.

    Reply

  19. It seems to me that a lot of PSSD patients will end up taking the urologist route in their search for a cure. It would be useful if urologists were made aware of the PSSD issue. The urologist contact point would be a useful place for the collection of some data, i.e. the numbers complaining of a particular set of symptoms who have previous SSRI exposure. Urologists do seem to be starting to enter the “low testosterone market” and are therefore picking up more and more sexual dysfunction patients, where the cause is not just a simple case of ED. Unfortunately the expensive, private urologist I consulted didn’t even know what DHEA was, had never heard the expression “free androgen index” and spent more time focusing on my total testosterone result than my free testosterone result. If urologists are to capture this market, I think they need to brush up on their endocrinology first!

    Reply

  20. PSSD is the most soul-destroying condition to have. I think I will have it for the rest of my life. I have no libido, and I am unable to have sex at all. I have had PSSD for over a year now. It was Citalopram which caused my PSSD.

    Reply

  21. I have Post ssri sexual dysfunction for over 3 years after I stopped medications.
    I was on Zyprexa and Solbem for 3 years.
    I need help…

    Reply

  22. PSSD is permanent. Simple as. It’s PPSSD and somehow I am supposed to live with that. Forever. Thanks Doc. There’s nothing you can do about it. I have tried everything and nothing. The feeling never returns. And looking back, those poisonous SSRIs did their damage, or at least started their damage, so very early on. Life gone, life taken, thanks Doc, I will never trust you on anything ever again.

    Reply

  23. 21 years old, suffering PSSD I stopped Paroxetine 2 years ago. I was on Paroxetine for 8 month. Think about suicide… no love no life. 🙁

    Reply

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