Prof Bouloux will do the following if he sees you:
- Ask you about your symptoms and history.
If you mention you were under massive stress, he’ll think you’ve had a mental breakdown. He’ll mention things like post traumatic stress disorder and fight/ flight mode etc. Except he is perhaps missing the point that stress seems to be a trigger for crashing and acquiring PFS.
As soon as you mention the internet (as in propeciahelp.com) he’ll dismiss it as internet hysteria. He is very much into what is in the current medical literature and his limited diagnostic examining. You can highlight the 3000 people worldwide (or 300 if Oscar is correct), that people have been like this for 10 years and the numerous symptoms. You can tell him you were loving life despite the stress. His answer is basically the drug can’t do any of this.
He’ll tell you members of his family take it and have no symptoms. This is common for many men on this board however. Finatruth mentioned on this thread he took the drug for years with no side effects. You can tell him the problems start when you quit the drug, as in the PFS crash, but this will be quickly dismissed.
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He’ll do the usual hormone tests, which don’t tell us much as we all know.
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The physical examination is basically checking the size of your testicles. I’ve no idea about ranges in testicle sizes and if they stay pretty much the same size when we crash - is it other parts of the genital area that contracts such as the skin? But i was amazed that he thought my genitals were normal looking and he again referred me back to fight/ flight mode etc. And how would he know what they looked like before anyway?
You could meet him once or ten times, but his answer will be the same. In the absence of any obvious abnormalities it must be a mental illness and prescribe anti depressants. Also it seemed pretty obvious that he took himself very seriously as an expert in the field that reads a lot of scientific papers. He wasn’t going to reduce himself to reading an internet forum. Spending a little bit of time on the the website, he would see this isn’t an ordinary forum.
There isn’t really a way of telling something is wrong with us, especially when we crash. This is the problem we face not just with Bouloux but many medical professionals as has been reported. The PFS Foundation should hopefully change this.
It was mentioned to me he had a neurologist/ neurosurgeon who went to see him and was considering quitting his job because of what propecia had done to him. I thought this would have been a more credible patient for him to take PFS more seriously and put more pressure on the MHRA (UK FDA equivalent) as he advises them. Obviously not though.
The short lived recovery i had with tamoxifen was put down as placebo effect. I wasn’t expecting any recovery and if you go from PFS patient (especially with sexual symptoms) to normal, it’s obviously a very noticeable occurrence.
In saying that, he is is conducting a study with his past patients regarding erectile dysfunction and did a questionnaire recently. Think it just involves one of those penis measurement machines you wear for 24hrs. Basically it will tell us that we have infrequent erections or weak erections. This might help him come round to the idea of PFS. But then where do we go after that with him? It’s a waste of time in my mind. If there is more concrete proof from the PFS Foundation studies, he might change his ways, but i can’t see him doing anything major for us that contradicts his current stance.
Oscar
Please tell me what this massive problem is specifically with that thread which you must have provided a link for about half a dozen times now on various threads? The length of the piece, the politics of contacting him too much, my outlandish hysterical nature, the clinically diagnosed hypochondria…? And flesh out your argument so it’s clear why you are an expert in diagnosing my symptoms?
I’ll know you’ll bring up the ‘mini-crash’ bit i wrote about but this was all about a recovery, something you haven’t experienced. I don’t even feel the need to retract that bit because that’s how it felt - a fluctuating experience after i crashed the second time. Do you not prefer attention to detail, or do you prefer just random claims being made with an information vacuum? I’m sure a keen observant like yourself can understand the limitations in getting a message across to complete strangers over a forum on such a complex issue as PFS?
Also, it wasn’t about me going to him and saying i’ve got PFS. I’d done that already in a completely reasonable manner and made well constructed arguments for my case and PFS in general. My brother got involved who is a surgeon and worked at the same NHS hospital as him. He could see my family and i were well educated. Nothing was going to change his mind but he prescribed me what i wanted in the end as a trial for the early intervention of drug treatment. After tamoxifen worked, i was probably too eager to show him i was right with the early drug intervention. I’d become frustrated by him and i probably became too hung up on getting him to recognise PFS in general.
There is no doubt there is probably a number of people on the board who haven’t got PFS, have just got minor unresolved symptoms or are just caught up in the hysteria of it all. But how can you possibly judge who has and has not got PFS? It’s an idiotic thing to do because even the most incompetent medical professional wouldn’t try that over an internet forum. You could also be cutting of possible leads for finding a cure and possible donators. Not to mention it’s disrespectful and dangerous when such as a condition can push people towards suicide such as Dr. Santmann’s son. To try and estimate the number of real cases as in your 10:1 guess takes it to another level.