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.
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.
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.
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.
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.