PSSDSufferer

The disgraceful thing about PSSD is the lack of support. I found out about PSSD myself, online. When I asked a psychiatrist about it, I was told: "Get that idea out your head." Nothing has changed. People still find out about this devastating, untreatable condition online, unsupported. People with PSSD have enough to contend with. We should not have to tell people about a side effects their Dr should've mentioned. We should not have to support those whose lives have been ruined; that's the responsibility of the Drs who got us into this mess. We should not have to fund research in order to get our condition recognised and treated. But here we are.

What a great podcast. Thanks to these people for having the bravery to discuss this injury, it can'r have been easy.

Several things are needed to address this harm that has gone unacknowledged for over 30 years: 1. An immediate alert being issued to all prescribers. The majority of prescribers are unaware about PSSD, meaning that they are not taking this life-changing risk into account when considering whether to prescribe SSRIs and similar drugs. 2. Information regarding the SYMPTOMS of PSSD being issued to all prescribers. Clinicians are largely ignorant about PSSD and may misdiagnose or dismiss a case of PSSD. 3. Patient Information Leaflets being updated to include explicit warnings about PSSD. Current leaflets were updated in 2019, yet do not mention genital numbness, the key symptom of PSSD. Furthermore, ' sexual symptoms may persist' should be changed to 'sexual symptoms may persist indefinitely' to make it clear PSSD can be permanent. 4. Mandatory reporting of cases of PSSD via the Yellow Card scheme. Many sufferers report that their Dr did not take their PSSD seriously, leading to the underreporting of PSSD to the MHRA. Whilst patients can submit a report themselves, it would be better if done by a Dr who can include any salient medical information. 5. Updated information regarding PSSD added to the NHS website. Current NHS websites do not describe PSSD fully and instead only suggest that people consult their Dr if they are 'concerned'. There is currently little point consulting a Dr regarding PSSD: they are unlikely to have heard it, unlikely to report it and there is no treatment. 6. An immediate release of funding for a prevalence study to be done about PSSD. Prior to 2019, Drs did nothing about PSSD as it was not officially recognised. Now the MHRA acknowledge 'enduring sexual side effects' they say it is 'rare'. The truth is that noone has bothered to do a true prevalence study. Even if a Dr is aware of PSSD, they cannot fully take into account this risk as noone knows the magnitude of this. Furthermore, any Dr claiming the risk of PSSD is vanishingly small could well be wrong. 7. Immediate funding released to study the pathology of PSSD and find a cure. 8. Acknowledgement that SSRIs and similar medicines have many off-label uses unrelated to mental health. Drs often say that the risk of PSSD must be balanced against the risk of unmedicated people committing suicide. For people taking PSSD-inducing medications for hormonal problems, gut conditions and pain, the use of suicidal people as an excuse to deny informed consent is unethical. 9. A specialist service set up to provide specialist support (and treatment once it becomes available). Currently, should a PSSD manage to get their Dr to take them seriously, they may be sent to services for people with psychosexual problems and embark on treatments that are entirely inappropriate and, ultimately, distressing. 10. A full public inquiry into how the entire medical establishment missed this side effect. The MHRA followed their algorithms, yet PSSD was not picked up by post-marketing surveillance (despite reports of PSSD going back to 1991). If noone is held accountable for this spectacular failing of pharmacovigilance, it will happen again.