Reflections and speculations on research & PSSD

This is a place to post research you have done on the topic along with your conclusions.
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anacleta
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Reflections and speculations on research & PSSD

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after many years in the PSSD community, I think that the sample of sufferers, besides being very small numerically to arouse particular attention/interest in researchers and institutions with respect to controversial new diseases such as fibromyalgia and vulvodynia (which in my country have recently received funding for research and patient support), has many factors to make it heterogeneous and thus even more stunted from a scientific point of view (different triggering drugs, doses and timing, different symptom ranges, comorbidities etc. ). this adds to the already difficult situation of lack of recognition due to stigma and the interests of pharmaceutical companies, institutions and physicians.

on the one hand we try to join forces as if we all have the same problem, to arouse attention and get around the fact that we seem few/rare. this is done to popularize, to create associations, to feed funds for research, to be able to do questionnaires and research surveys and bring some papers into the scientific literature.

but if you look closely, the symptom ranges are different from case to case, and it is hard for me to think that researchers can find a clear target, that is, identify THE damage so they can intervene on it, in other words find a cure that is good for all of us and for all symptoms. even remedies that have helped some turn out to be ineffective or harmful in others, from shares in the community.

the idea of being able to put together a valid sample of patients with pssd for clinical, genetic, or experimental studies seems unconvincing. perhaps there is not even ONE syndrome. rather, among the many people taking drugs, there are cases of drug intoxication with mixed and varied symptoms, sometimes obvious and overlapping, and with underlying damage varied in each case: epigenetic, neurological, endocrine...

there are those who have erectile dysfunction but no hypoesthesia, those who have hypoesthesia but no erectile dysfunction, those who have anorgasmia but no loss of arousal and those the opposite, those who have libido but erectile dysfunction and those who no longer have libido, those who have erectile dysfunction and hypoesthesia but intact orgasm, those who have no erectile dysfunction but "dumb" orgasm, some have genital hypoesthesia and emotional dulling and post ssri anhedonia, some just the one, some just the other, some have all this because of antipsychotics, some have also developed cognitive dysfunction, gastrointestinal problems, vision, loss of skin sensitivity, etc.

is it the same type of damage localized in different districts of the nervous system, has it affected different nerve bundles? e.g., polyneuropathy that has inhibited a molecular transmission and taken away sensitivity a little here a little there in the peripheral and/or central nervous system?

can the symptom of genital hypoesthesia be strategic to investigate in order to seek an answer to the other symptoms as well? if there is an alteration in the functioning of nerve endings receptors or neurons, ion channels, etc., could this type of alteration have affected different points in the nervous system leading to various symptoms, both those that seem peripheral and those that seem to involve the brain?

genital hypoesthesia leaves less room for interpreting the symptom as psychological than many of the other symptoms complained of, so it perhaps offers a little more scientific reliability, plus the genitals are more accessible to a possible sensor or biopsy than the spinal cord or brain. but the loss of sensitivity to the genitals could also be the result of damage other than post ssri anhedonia...

or do the symptoms depend on a cascading effect? e.g., silencing of certain receptors at the epigenetic level with repercussions on neurosteroids and thus on a thousand other matters.

current experimental studies on pssd are not really centered on pssd, but on the effects of certain SSRIs on rats, molecules, cells...if persistent molecular alterations caused by SSRIs are found, they say little about the symptoms they cause (in a sample of rats not subjected to behavioral observation studies) and may not center on our symptoms at all.

however, perhaps at the molecular interaction level a certain molecule (drug) causes a certain effect in ANY person, such as it might be a reduction in a neurosteroid, but only some people are affected by this decompensation with glaring symptoms because their functioning was more closely related to this than in other people.

or for some reason (such as a specific biological mechanism or a vulnerability in their system) they are unable to restore the previous balance. there are those who developed PSSD "at some point", after several previous treatments. i think that perhaps if we had taken SRI at a different time we would not have had the trigger of persistent symptoms... more than genetic predisposition, it could be a temporary vulnerability in the system leading to persistent damage or alteration (immune system status, enzymes, viruses or other ongoing?)
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