It doesn’t feel like we’re being stigmatised, we are being stigmatised by medical professionals who are ignorant of this disease. Professor Traish alludes to as much in his literature review https://www.researchgate.net/publication/326657434_The_Postfinasteride_Syndrome_Clinical_Manifestation_of_Drug-Induced_Epigenetics_Due_to_Endocrine_Disruption
“Patients with this condition should not be stereotyped or stigmatized by untrained and unprepared clinicians, due to lack of awareness and knowledge pertaining to this new and rare syndrome. Greater awareness and education is needed among the medical and scientific communities in order to develop better approaches for managing men with PFS. It is paramount that steps are taken to develop better understanding of the underlying mechanisms contributing to the onset and progression of PFS and to promote educational and training programs to increase awareness and improve management of this condition.”
One of the meta, secondary horrors of this condition is being disbelieved, their facial expressions showing quizzical, askew glances at what you’re telling them has happened. Often, there are naked and shameless pivots from these clinicians into talking about your mental condition, as in, they are openly saying that Finasteride cannot induce what you are claiming and therefore you are crazy, and because you are crazy, you are imagining these symptoms or somehow psychologically inducing them. I’ve had different doctors misdirect away from what I’m telling them to say, variously
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How men on forums claiming Finasteride made them not able to achieve an erection could be because they no longer find their wives attractive and don’t want to admit it to themselves and therefore blame a drug instead
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When I asked my GP how what I was experiencing could possibly be psychologically induced (his claim) he said the mind was very powerful and he’d “once seen a hypnotist convince a man to walk up straight and believe he was a ladder”.
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After complaining of numerous neurological, mental and physical devastation, another GP only offered a simple course of cognitive behavioural therapy
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Despite my asking for a referral to a gastroenterologist in several different GP visits, it was only granted after he conceded that I had lost a dramatic amount of weight and I did look very ill. For context, around this time I spent a day on an emergency medical unit and the first thing they thought, just from looking at me, was that I had Crohn’s disease. Advising me in advance of my appointment with the gastroenterologist (who he knew personally), he told me not to mention much of my symptomology, otherwise “I might look a bit” and he used the spinning-finger-at-the-temple gesture to indicate “crazy”.
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During the consultation with the gastroenterologist, after doing a rudimentary check on me by feeling around my stomach with his hands, he stated that he was so certain there was nothing physiologically wrong with me that he would “bet his next month’s salary” on nothing showing up from deeper investigation. When I asked him how it was possible that practically overnight I could no longer eat more than around 1000 calories per day, would get severe head pressure, particularly after eating and was regularly excreting sloppy, non solid stools he said he thought it was psychologically induced. He said that 90% of the patients he sees have nothing wrong with them but did concede that he did believe that patients can honestly believe that they’re experiencing whatever they’re experiencing and he had sympathy for that but, basically, they (and by extension, I) need to see a psychotherapist. When I asked how he explained my halved testosterone levels and enormously increased estrogen readings after ceasing Finasteride use he stated he “couldn’t possibly comment as I’m not an endocrinologist”. And yet, he isn’t a psychologist either but felt very comfortable offering his amateur, cod psychological verdict on my condition. He spun an anecdote about a rugby player who breaks his collarbone but doesn’t feel pain until somebody points it out to him. What this had to do with the devastating symptoms I was physiologically experiencing I don’t know. He had a thoroughly contemptuous expression on his face throughout the consultation despite me paying privately for his time.
The good thing is that now, instead of all these anecdotes that I’m sure the majority of the forum could produce from their own experiences, we have this institutional medical failure of PFS patients collated into a powerful scientifically valid form thanks to our Patient Survey
With such overwhelming numbers of PFS patients showing such dismal satisfaction levels with the doctors they have seen, it is no longer dismissable as the complaints of a few cranks. The anecdotes have become data to be used scientifically.
As @AnhedonicApe says, as things currently stand, there isn’t a lot doctors can do for you, even if they believe what you are telling them. Unless you are in a clear emergency, my advice would be to not go to them. I understand that severe head pressure certainly feels like an emergency when it comes on though. It is a symptom I am very familiar with.