Why dont doctors even mention pfs

General Discussion
#1

Like I said in a previous post, I saw two separate dermatologists in canada through the public system so there is no way they are paid off. Yet one was nice and open to listening to my concerns yet seemed to genuinely have no idea what pfs was, even though he said he ‘has a very in depth knowledge and understanding of all the drugs he perscribes’. The other doctor I saw at a separate clinic however, got very defensive when I asked about side effects (which he did not mention at all unless I asked him) saying less then 0.5 percent of people with a history of mental and physical health problems got side effects but that he has never seen side effects once through 20 years of prescribing the drug. He said probably a hundred million men around the world take the drug with no issue and that I shouldn’t listen to crazy people online. He said someone who gets side effects tell 100 people and someone who doesn’t tells no one they are even taking it. He said if he told me the side effects of Tylenol then id never take Tylenol again and he said I take much greater risk getting in a car each day. He said life is about taking risks and success favours those who go all out and take chances and that I should value my quality of life and success over a non existent risk from a pill millions and millions take. When I tried to ask about post finasteride syndrome which is something I had read about he almost got angry with me and said ‘you know what, dont take it, if you have this mindset you will get every side effect you’ve read but it wont be because of a little pill’.

This all seemed very strange to me, I brought up the topic very casually, just wanting to cover all the bases. But he had me thoroughly convinced and so I took it and now im here. I feel cheated by that doctor almost and I feel ashamed because anyone I talk to is gonna tell me its in my head just because it was something I knew about before and I only took the pill a short while. But I dont think its in my head cause the first days of taking it my sex drive was actually dramatically higher then it usually was and it wasn’t something I was consciously focusing on.

So what is up with doctors having no idea about this condition? Is it just so rare they never encounter cases? Am I right in thinking that second doctors was not being very professional?

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#2

This question deserves a whole book to be answered properly. The book would be about human nature, human psychology, the nature of evil, bias, guild interests, modern medicine, corruption, pharma influence on medicine, fraud in science, and a few other topics.

For now, just understand that people have motivated reasoning (bias) stemming form their personal interests. Why do many smokers believe smoking does not cause cancer?

Dermatologists have a guild interest in having drugs to prescribe or else they are useless. Therefore, they will defend the drug, even if they know it is harmful. Most people are able to rationalize their evil actions to themselves.

The bigger share of one’s practice a particular drug takes, the more the particular medical specialty will deny the drug’s harms. For example, hair surgeons are much more likely to deny PFS than endocrinologists.

I can keep going with the rest of the themes I listed but this is a very complex topic. The trouble is when you are young and innocent you don’t know any of these things. I didn’t know them either when I fell victim to this crime.

And a crime it is.

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#4

I think big pharma, as well as the government, know that if you tell a lie enough times, people believe it as true.

They pay to spread messages and agendas in movies, tv shows, advertisements.

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#5

Because it isn’t proven to exist. Hardly a single paper, let alone a consensus of several, has shown it exists. It’s really as simple as that. That’s why we need to get the science done.

Until something is published, as far as any doctor or scientist is concerned we are no different from people who think tooth fillings are bad because they attract radio waves that alter peoples’ thoughts or any number of other unproven notions that people have about medical treatments. There are probably people that think every single thing a doctor could do is bad. Until we have proof, we’re no different from any of the others.

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#6

The truth is, Finasteride has thousands of documented, proven actions on the body. It effects so many parts of our body, infact, that it IS very likely, that as little as 1 0.5mg pill of Finasteride can cause a syndrome that lasts for months, if not years, if not for the rest of your life.

Doctors do not mention the Syndrome because #1, it harms their money making abilities and scares patients and #2, they have literally no way of curing it, so it’s better for them not to mention it at all. Only when a cure for PFS comes out will people start to talk about it casually. Until then, it’s a taboo subject that most medical professionals and men trying to fight hairloss would rather pretend doesn’t exist.

This is a good thing, the more people that get on Finasteride the more PFS patients we will have. The more PFS patients we have the more donating to research and the more wanting a recovery. What you should focus on is not convincing individual doctors but instead getting the word out about PFS to the general public so people that have PFS and either don’t realize it, or don’t realize it was caused by Finasteride, isotretinoin, Minoxidil/whatever drug they took, can join us and start to beg for research like the rest of us.

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#7

I have wondered how many people are out there suffering without knowing why.

#8

@rolan I’m sorry you had to experience that. I’ve seen similar stuff.

Having had this for seven years, I see reasons for hope:

  1. I talked to my urologist who for the first time seemed to consider my issues with urgency, and is going to prescribe a treatment he saw discussed on a doctor-only online forum.

  2. The research has picked up pace in the last few years. There is a very small number of researchers taking PFS seriously, but they continue to publish. You can see a bibliography here: https://finasteride.network

You can send that link to your doctor. It is a neutral bibliography, so it includes papers with various points of view on finasteride and PFS.

The Foundation has this list of symptoms: https://www.pfsfoundation.org/about-pfs-post-finasteride-syndrome/

The Foundation also has news stories. Here’s one from the Washington Post:

Potential side effects of the drug Trump reportedly takes for hair loss
By Daniel Marchalik MD
https://www.washingtonpost.com/news/to-your-health/wp/2017/02/03/side-effects-of-the-drug-trump-reportedly-takes-for-hair-loss/

Doctors can be surprisingly rigid and intolerant of ambiguous patient presentations that they haven’t seen or don’t understand. Some prefer to rule these out as a reflex. Maybe they don’t have enough evidence so they can’t confirm it – but that doesn’t mean they can rule it out, either. Just because the gold standard of medical evidence is not yet available, does not mean something is not real.

Medical institutions can be very slow to come around to recognizing disorders. Another example is Lyme Disease which the CDC underestimated for years. The medical establishment also didn’t acknowledge that some people have long-term complications after treatment, but now the NIH has made a major commitment to investigate these cases.

The way I see this is, getting PFS recognized is (in part) an information war. We need to keep showing research, news stories and patient stories to doctors and researchers. Otherwise they will rely on the conventional wisdom, which is simply wrong.

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#9

Then let’s get the science done so they can’t deny it anymore. We have failed to do that now for over a decade. At this point WE are the people to blame, not the doctors. What should they do, say that a bunch of complainers who have no evidence even after 20 years of bitching are probably right? Of course not.

#10

The world is full of hypochondriacs. How are we any different from hypochondriacs when we don’t have any scientific evidence? We aren’t. That’s the problem. It’s on us that we haven’t gotten our shit together, unified cause with Accutane and PSSD sufferers, acquired a diverse and sizable mass of people, and mobilized to get science started. Basically, all we have done is sit here googling about libido and brain fog, pop some herbs, and complain about drug companies thinking that about 3 admins should work on a cure for us for over 10 years. Great job guys.

#11

I don’t share your view.

#12

You can bang your head against the wall as much as you want but practically the definition of a doctor is someone who administers treatment according to the dictates of established medical science. Even if a doctor personally has the opinion that PFS exists, what do you expect him to do? Our task is to get our problem illuminated and accepted by medical science. Until that happens going to a doctor or imagining that one might provide a cure is to misunderstand the function of a doctor.

#13

@vkg1, while I agree that the majority of post-drug patients don’t take any productive action or contribute much effort, there are still many who have taken action and hit the brick wall of lack of acknowledgement in the medical community, lack of media attention, and lack of interest in funding such endeavors.

I’ve personally experienced this, know that there have been major efforts by those in the PSSD community, and have witnessed the extreme effort of the admins here yield what little progress we have had.

#14

@Sibelio, that deserves to be engraved on a granite plaque and hung over the entrance of the FDA, MHRA, and the once-trustworthy Cochrane Collaboration main offices.

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#15

Yes we will always hit brick wall until we get the science done. That’s why the overwhelming amount of effort and discussion here should be toward the achievement of scientific study of our problem. Instead of getting thousands of people to fill out survey, we are still talking about herbs, TRT, hcg, clomid, etc all the crap that people have tried thousands of times before and never worked. Every day we continue this way is another day added before we achieve a cure.

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#16

These are the same thing.
If we prove the existence of the condition, we are more likely to get funding and interest from scientists. Our more recent discussions with scientists praised the survey and said it was extremely beneficial in helping our cause.

We are all volunteers and would be grateful for any help you would like to offer.

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#17

Frankly it’s understandable people try to cure themselves instead of waiting for scientific progress even if many self therapy trials proved to be fruitless and even harmful. I don’t want to sound like a pessimist and I also strongly believe in the urgency and importance of science. However, PSSD is basically acknowledged by EMA in Europe but I don’t see how this fact translates into more research. It’s an important step and achievement of course but so far this post drug syndrome still seems to be too rare for the scientific community to really start focusing on it. Again dont get me wrong: the scientific understanding of the etiology is absolutely key. But until scientists get there this may take quite some time.

#18

I think you misread my post a little

#19

Apologies, I think I did.