“If you wish to have such “syndrome” continue what you are doing … read obscure studies and reviews in obscure databases and I can guarantee to you that you will have it till the end of your life!”
Anyone who has experienced a serious side effect from a medication will know how difficult the conversation with your doctor can be.
In our new paper, “Post-SSRI sexual dysfunction: Patient experiences of engagement with healthcare professionals”, 62 people from 23 countries tell us about their experiences of trying to get help for their condition.
Our manuscript is Available Here.
We are grateful to all of those who contributed by providing details of their experiences. We hope this paper will not only help to raise awareness of the condition itself, but also bring greater attention to the difficulties that patients can face when trying to seek support.
Please note that we are still accepting donations toward the RxISK Prize which is aimed at finding a cure, and would welcome any contributions.
Despite EMA’s commitment to ask companies to update drug labels, PSSD sufferers are still likely to need evidence from a test in order to be taken seriously by health services.
Astonishing as it might seem, we know little more about the sensory side of the peripheral nervous system, touch in particular, than we knew 100 years ago. Neurology services have great tests of peripheral motor but not sensory function.
Few people with PSSD know this and are pleased to get any referral for a test, but despite obvious genital numbness, abnormalities are rarely or inconsistently found on standard tests of peripheral neuropathy or on sensory evoked potentials, sympathetic skin responses or MR neurography of the spinal cord, which risks providing ammunition for anyone saying your problems aren’t real.
The genital changes include:
- decreased somatic (tactile) sensation
- decreased erogenous (sexual) sensation
Erogenous sensation is poorly understood and there are currently no available tests. However, quantitative sensory testing (QST) of the genitals is a well-established method of assessing somatic sensation, typically involving the use of warm/cold temperatures and vibratory stimuli.
Using a form of QST, studies from the 1990s showed that SSRIs decrease somatic genital sensation while taking them. Every report we have had of QST testing of the genitals has found abnormal results in PSSD.
The tests usually done (sensory evoked potentials, sympathetic skin responses, etc.) do not directly measure somatic sensation and as mentioned don’t pinpoint a problem.
Blood tests for hormone evaluation are of limited value. Loss of libido and other symptoms caused by the condition do not appear to be mediated by standard hormone levels. Some patients have slightly lower testosterone, but this is likely a consequence of the condition rather than the cause.
We have seen some evidence that assessment of nocturnal penile tumescence can reveal an abnormality, but it’s not known if this is common to all male PSSD patients.
In summary, it would be helpful if you could get your doctor to refer you for QST genital testing and let us know what is found and how the testers or your doctor interpret the results.