Your donations are needed to fund scientific research into post-SSRI sexual dysfunction (PSSD) and other enduring sexual dysfunctions. The aim is to better understand the biology of these conditions and hopefully find treatments.
£45,411 raised of £50,000 goal
341 donations
The conditions
Post-SSRI sexual dysfunction (PSSD) is a condition in which sexual side effects don’t resolve after stopping certain types of antidepressants (inc. SSRIs, SNRIs and some tricyclics). In some cases, the sexual side effects only emerge upon stopping the antidepressant.
The condition affects men and women of all ages and causes genital numbness, pleasureless orgasm, loss of sex drive, impotence and other difficulties. It can start after only a few days of taking an antidepressant and in some cases persists for decades. There is currently no treatment.
It can lead to relationship and family breakup, job loss, and suicide.
There are other related conditions:
- Persistent genital arousal disorder (PGAD) which can be triggered by stopping SSRIs.
- Post-finasteride syndrome (PFS) caused by finasteride, a medication used to reverse hair loss in young men.
- Post-retinoid sexual dysfunction (PRSD) caused by isotretinoin, a medication used in the treatment of acne.
The fund
Our research fund was launched on 21 June 2022 with the aim of facilitating scientific research into PSSD and other enduring sexual dysfunctions. Donations are made to Centre for Data Based Medicine, a registered charity in England and Wales.
All major cards are accepted, or you can pay using a PayPal account. If you have any difficulty donating, please contact us.
The total is updated manually by our team, so don’t worry if your donation doesn’t appear immediately.
Please note that our research fund is not affiliated with any other group. All projects currently supported by our fund are described below. We are not necessarily committed to these – we keep our options under constant review.
Research
Updated 5 December 2024.
Milan
A little over 2 years ago, RxISK began supporting Professor Luisa Guerrini in her research looking at the effects of SSRI drugs on p63 regulatory proteins. Both thalidomide and SSRIs it appears act on p63, and this may explain how both can cause birth defects.
The research has drawn our attention to and may help explain some anti-cancer and antiviral effects of SSRIs, which they also share with thalidomide and related drugs.
While there seemed to be very clear effects of SSRIs on p63 proteins, the work had not got to the point of being publishable when unfortunately Luisa’s main research assistant left. Luisa has not been able to replace her. This may have been because the pay we could offer was not attractive enough, or it may be due to other reasons. Not being based in Milan, it’s difficult to know.
This project, which appeared to be breaking new ground has therefore come to a stop for the moment. Without a clear path forward we have opted not to fund it further.
Transcranial photobiomodulation therapy
We have been tracking the use of transcranial photobiomodulation therapy in two PSSD sufferers, following literature claims it would likely help and some claims from sufferers that it had helped them.
There is published literature describing its use in antidepressant-induced sexual dysfunction, but to our knowledge this was the first time it has been tried in PSSD patients. Unfortunately, in our volunteers there were no noticeable benefits.
Exeter
We have also been exploring whether corneal confocal microscopy (CCM) testing might be a way to establish a diagnosis of PSSD. This work has been linked to Professor Mitra Tavakoli from Exeter University, who is an acknowledged expert on CCM. We organized for and sponsored 12 volunteers to visit her lab and be tested for peripheral neuropathy and by CCM.
Mitra tested our volunteers while also running the same protocol in a large study under the auspices of the pharmaceutical company Sanofi. She has provided the results of peripheral neuropathy tests and some CCM data. However, she has not provided an analysis of dendritic cells, despite being implored to do so.
This has been extremely frustrating. Efforts by ourselves and those who participated have been unable to resolve the situation.
WinSanTor
In the course of the Exeter study, it became clear to us that Mitra Tavakoli was also liaising with WinSanTor whom many of you will know about, and who are trying for find a way to get pirenzepine on the market as a treatment for peripheral neuropathy in diabetes. One of us (DH) had a meeting with WinSanTor in mid-2022 and made them aware of PSSD. Although their website now mentions sexual dysfunction including PSSD, we are currently unaware of any work being done by WinSanTor involving PSSD.
We have a number of volunteers trying oxybutynin, a closely related drug, to see if it helps. As the benefit, if there is one, involved regenerating nerve endings, any help from medicines like these is likely to take 6 months of treatment to appear. We are awaiting reports back. If there is no response to oxybutynin or benztropine it is unlikely there will be a response to pirenzepine – but we have been trying to get some German colleagues to try pirenzepine which is available there but not elsewhere.
RxISK Prize
Over the last 7 years since it started, we have had lots of proposals for ways to cure PSSD, aimed at claiming the RxISK Prize. We have a panel of volunteers with genuine PSSD who are willing to test safe options, and several have been tested but nothing has worked.
Recently we have had a very different proposal that combines physical and psychotherapy elements from a group of enthusiasts for the approach. It likely could be helpful for many problems, but we will have to see if it helps PSSD.
We have 4 volunteers willing to try it out. All will have Von Frey Filament testing of their genitals at baseline and after the treatment finishes. The project has begun. We will likely have some sense as to whether it is helping in 3 months or so and will post our results.
Anesthetics
We have had several RxISK reporters report benefits from propofol, a drug used to induce anesthesia. The benefits have been real but short-lived, perhaps because the anesthetic was brief.
Recently we had someone who had propofol and another anesthetic, sevoflurane, and had substantial improvements that lasted two months. Googling propofol and anesthetics, you can find reports that some people who do not have PSSD can have significant energizing and sexual effects for periods of time afterwards.
A recent Nature paper pointed to new effects of propofol on hyperpolarization-activated cyclic nucleotide-gated (HCN) channels that might explain these benefits. We have written to the authors but had no response – even hanging the Prize bait in front of them.
If you want to contact them, the corresponding authors are:
H. Peter Larsson; peter.larsson@liu.se
Crina M. Nimigean; crn2002@med.cornell.edu
Other
For 7 years now we have a RxISK Prize in place. One hope behind this was to stimulate researchers to see if what they were working on might help this condition few of them will have heard of.
A second benefit is that if any of you hear of some promising cure, rather than starting off by taking risks on something that might or might not be helpful, the Prize offers you a chance to approach researchers and say a number of people with PSSD wonder if your recent research might offer a cure for PSSD – if you think it might, have you considered contacting RxISK to see what you might need to do to claim the $100K Prize? If no-one even attempts to make contact about the Prize, you can draw your own conclusions.
A person approached us recently, asking if we could put in a good word for him with Dr Melcangi whom he hoped could treat him or with the team promoting BC0007. Rather than anyone trying to get us to work for free for them as their research assistant, there is an opportunity to arm yourself with the RxISK Prize message and approach these folk yourself.
Finally, we have had several volunteers Von Frey Filament tested. This test does seem to pick up genital numbness. No one knows for certain what the normal sensitivity should be for the genital area, but with a condition like PSSD, testing before and after a potential treatment for PSSD allows people to act as their own control. The equipment is not expensive, but it is a two-person job and will need folk with PSSD who live near each other to help each other out. It would be great if anyone who does this reports the results to us, and we will try and build up a databank for normal and abnormal ranges and where exactly is the best spot to test.
Money disbursed
- Von Frey Filaments £394.25 on 28 January 2024
- CCM study £1,100 on 19 October 2023
- £15 transaction fee on 12 July 2023
- £9,642.36 to Dr. Luisa Guerrini on 12 July 2023
- Open access fee of £1,289 on 29 June 2023
- Transaction fee of £5 on 27 July 2022
- £13,925.15 to Dr. Luisa Guerrini on 26 July 2022