Just last night I sat around for 10 hours waiting in Accident and Emergency as my brain lately has been burning with intense pressure all over. I seen a doctor that had this arrogance about him immediately as I entered the room and out of the 30 or or doctors that I’ve seen over the last 10 months he was by far the rudest and most condescending tube I ever had the displeasure of meeting. To be sat there and to then be told by him after explaining the situation about how my symptoms only appeared suddenly after taking Finasteride as can evidenced by my medical record his reply was the following “Nope, there is no way that one pill could do this you must be on the medication for much longer and still it couldn’t do that hahaha!” not just that but his whole attitude towards me was terrible yawning to a point that I asked him did he want a cup of coffee. It’s so depressing having those in the medical field mistreat you because they can’t see the physical condition or believe that an endocrine disrupter as powerful as finasteride can inflict serious damage, it almost feels like we’re being stigmatised, a lot of these doctors seem completely uneducated or oblivious in regards to the seriousness of this medical issue.
I simply stopped seeing them. They only make me feel shit. Best case scenario they do admit the condition but tell you that they also don’t have the answers. There is nothing to gain in my opinion from a doctors visit in our position.
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.
There is a lot of scumbags working as “Doctors” I was kicked out of my local GP clinic when I needed them the most because I was costing them too much money as a public patient.
Most Doctors are worse than useless when it comes to PFS.
Know the feeling, I’ve had doctors walk out on me when I was explaining my situation and I felt helpless at the time cause I didn’t know where to turn.
I wouldn’t say it’s 1 pill of fin just tell them you took it for several months to make to fit there narrative or if your head feels like it’s swelling just tell them the symptoms and avoid the fin stuff altogether. Most won’t agree with you anyway, fin obviously triggered something else that makes it hard for anyone to diagnose all the issues related with this mess.
I had a six-month check-up with my primary doctor yesterday. I told him that I had been on finasteride prescribed by my urologist, and had stopped it due to side effects. I asked if he knew of any side effects due to that drug, and all he could mention was reduced semen quality.
At that point I asked if he was aware of PFS. He knew nothing about it so I pulled out a paper on which I had written “post finasteride syndrome” and the Propeciahelp.com website. He literally refused to take the paper from me, and said that he could look it up. The way he said it I don’t believe he ever will. I gave him a rundown of some of the actual side effects people have including of course, ED, and his eyes kind of glossed over.
I did not expect him to be an expert on it, but I also did not expect him to be so totally disinterested.
Doctors spend years of their lives training to develop “expertise” as doctors. They believe in their training as an ideology which is supposed to present them with all the answers. When presented with data or information they don’t understand, the insecure ones will blame the patient. Given that the medical profession selects for people who can memorize massive amounts of information they don’t tend to be so confident in their abilities to think outside the box. HINT - WE RESIDE OUTSIDE THE CURRENT BOX.
The few who have actual medical wisdom and are secure in their medical judgment may try to figure out what is wrong with us and fail because nobody has any answers right now that are universally applicable to all PFS patients. The good doctors will be able to tell you I don’t know.
It’s taken me a long time to get to this point, but these doctors aren’t viciously trying to oppress us. Some of them did get corrupted by the system. But its incumbent on us to figure out how to change the system so that it will acknowledge us as well. Don’t blame your doctors. Blame the system and figure out how to achieve systemic change.
The brain burning is horrific I know the feeling well
Happens to me all the time, lasts hours and even days some times for me.
I should state that a few days back I got my Medical history and surprisingly the Urologist who I seen a few months back had written all my symptoms down and then below it had written Post Finasteride Syndrome. He was recommended I think by this site and was fully aware of PFS.
Did you tell the urologist about this forum and that others are fighting the same condition? Seems like he is a good doctor if he acknowledges the condition.
Yes, I told him he was already aware of the syndrome so it would make no real difference.
Patient load is one problem too and I think I can empathize with the problem of the internet with all its misgivings of misinfo and quackery that sours the patient-doctor relationship. We are medical unicorns maybe in a sea of hypochondriacs and patients seeking overtreatment. That isn’t to excuse the bullheadedness of many doctors who dismiss us outright, refusing to change their minds when presented with new evidence.
But what can a sympathetic doctor do much to help us?
Spot on.
Hello guys, my mind reminded me a past event. This anger waves are killing me inside. People are so rude! Even doctors! They have this stupid God Complex! 2 months ago, i went to urology in a special hospital. I paid a lot for an simple examination and the doctor didn’t even listened to me. I went there twice, to show my blood and semen results, he calmly listened my problems and theories about PFS first, but the second time this happened; Im writing an abstract version of our dialogue.
Me: So, here are the blood and sperm results sir…
Dr. Ok, all looks within the rage, you are fine.
Me: Well… i expected this, i know they are within the range, but i have a hourglass penis before urination and my balls got smaller, i have also very very low semen volume since i took Accutane…
Dr: You are fine, tests and physical examination shows nothing… (he says this very rude and strict.) I didn’t saw a hourglass shape. Also you didn’t measured your testicles before, you can not prove this and i can not do anything about this.
Me: Its because the hourglass shape happens before urination, sir, i know you need to follow a protocol to treat your patients, but as i said, i have these issues, just because my results look “within the range” it doesn’t means that im not sick. Don’t you think? Can you at least give me a doppler scan test? (I talk very kind and almost miserable while saying these things)
Dr: No i can’t give you a doppler scan, we don’t give to people like you, i have nothing to do for you. (Here comes the breaking point) please leave my office.
Me: But… ok… please listen me, i researched this syndrome, its called PFS and it is on medical literature… there is a theory called androgen overexpres… -
Dr: I DON’T HAVE TIME FOR THEORIES. Please leave the room allright?
Then i went out and filled a complaint form which has no meaning… my hands were shaking because of anger. And i leaved the hospital. I can’t believe this is really happened. A special doctor expelled me from his office out of nothing! I wish i said many things to him that i couldn’t say at that moment. He was so rude and disrespectful.
I posting this because i wonder about the other doctors from other countries. Did they treat you this rude too? Did they listen you, or just cut it out like " i dont have time for theories, you look fine".
I hate doctors like this, i hate this kind of disrespectful people. He literally expelled a patient from his room, he didn’t even listen me. At least he should listened my theory and gived me some advice and information about hormones… what kind of a person is this. Just for the record: His name is Op. Dr. Serkan Akdemir (Medicalpark İzmir Turkey)
I am really sorry!
What’s his name and hospital affiliation? These people need to be publicly exposed and shamed.
Not uncommon, I’ve had what was supposedly the top endochrinologist in the country tell me my numbers were fine and there was nothing he could do for me and just walked out while I was talking to him.
As rude as that is, there probably is nothing he can do for you.
Hi @Cooper , I merged your thread with this one as they are essentially about the same subject matter. There are quite a few examples in here of members being dismissed or condescended to by their doctors, it is a common experience for many PFS patients. In future consultations with clinicians, it may be advisable to not even mention Accutane if you are seeking a specific test for isolated symptoms (such as a doppler test).
I went to a Uro and told him my situation. He was extremely rude as well. He says: “Its not often we see guys your age come in with this problem (ED).”
He then said: “If this is from propecia, theres nothing we can do for you.”
He then gave me a script for testosterone bloodwork which came out in a low normal range. The secretary called to tell me my results and when I asked if he needs to see me again, she says “No, he says you dont need to come in or do anything.”
This is so unacceptable. Ignorance is not an excuse for dismissing a patient. Its not true that there is nothing they can do for us. They can prescribe viagra/cialis/hormones. They can also send us for a doppler so we know if there have been physical changes. Even having that knowledge is very helpful in moving forward to get better. I have seriously lost count of all the doctors who have done more harm to me with their god complex. Not ONE uro ever mentioned that nocturnal erection are important for tissue health. Even the ones who asked if I was getting morning wood never mentioned the dangers of erectile inactivity. Granted, I may have already had fibrosis at that point but none of them even gave me shot at beating this. Goldstein is the only doctor who gave me the time of day but I cant tell if Im too late at this point. I did everything I could do to give myself the opportunity to get better and Im only in this situation because of idiot doctors and corrupt drug companies.