To his credit, he transferred me to the NHS for some testing, which he didn’t have to do given his belief.
Who knows, with a little more time to digest the information, he may come around to the notion that something more complex is going on.
In fairness he was forthright with me when I emailed him. No charge for consultation, made it clear he had no treatment for PFS but admitted some had minor improvements through hormone manipulation.
I don’t think he’s intentionally misleading people. He just simply doesn’t have any evidence to help us. The results from the medical studies can’t come soon enough really.
“Cyberchondria” is the term Bouloux alluded to.
There’s even a Wikipedia page - en.wikipedia.org/wiki/Cyberchondria
Interesting entry at the bottom of the page. It’s a shame so many doctors are opposed to it.
The real test for any of these morons (that includes you, Prof. Bouloux) is…
Will they take finasteride themselves? Will they prescribe to their son and brothers and nephews and next-door neighbors?
If they will happily ingest the drug at full dose for one year, then I will at least give them the courage of their convictions.
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.
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This appears to be a regular thing with Bouloux. I know a man who went to see him and was prescribed a non-standard anti-depressant. The anti-depressant ended up causing all kinds of other debilitating problems, which he reported back to Bouloux. Bouloux responded by saying that a close family member takes it. The inference being that there is no problem with the drug.
Hello.
Don’t post mad things and I wont think your mad.
Too late.
Your not the only one, not by a long way. But your insane emails where clearly relevant to this thread.
(p.s., Aren’t you the same one refusing to donate to the PFS foundation? viewtopic.php?f=33&t=6773&p=66524&hilit=+notcrashedyet#p66524)
Did you just make that story up? (p.s., Accutane IS NOT a 5a-R inhibitor.)
Oscar, did you not feel any sort of emotion when you crashed, you weren’t desperate for answers, determined to get help? You probably didn’t, i’m sure i recall you thought it was more important to wait 6 months and be seen for free on the NHS rather than have to pay for early treatment and take matters into your own hands. You would be the more likely to be making this up then, since you seem to prioritise your finances over getting cured?
You just don’t seem that serious about trying to get better. It just seems like this is a journey for you, where as i and probably most others are desperate to stop losing these years in our youth. If we all got cured tomorrow, the rest of us would probably say goodbye, forget about PFS and go about making up for lost time. Most people here are probably tearing themselves to pieces everyday about getting back into a relationship or awakening their sexual being again. But what sort of girl would take someone like you? The rest of us will be shagging our hearts out and you’ll still be trawling the forum trying to pick out the minutest of faults in people’s posts. It almost seems like a project of yours, as if you get enjoyment out of it. Completely bizarre.
If you are really serious about your convictions and want to be useful, why don’t you start making a donation to the Foundation for every hypochondriac out there? The hypochondriacs can then ask for there money back.
Or since you are a model PFS patient, why don’t you go and see Bouloux yourself and spend some of that money you are so scared to touch? You live in the same city after all, unlike most of the other 80 people that have gone to see him. You will be more informed on what his patients have faced with him, rather than relying on the fantasies in your head.
I’ve never said don’t donate to the Foundation. I said people shouldn’t be forced to and have flashing neon lights put next to their name if they didn’t donate. I’ve made my donation for this year, but i’m happy for you pick up my tab for next year and for every year after that you label me a hypochondriac - Cheers 
I wonder is Bouloux somehow connected with merck ?
No. I have spoken with this patient of Bouloux on many occasions and have absolutely no reason to doubt what he told me. I was in contact with him because at the time I was setting up an appointment to see Bouloux myself. I have no agenda, only sharing the information that I have.
Besides this I’m not here to justify myself to you and get into some flame wars, which seems to be your main goal. I’ll leave you to it.
I can’t see him being connected to Merck. He’s actually a good guy, very approachable and will at least listen to what you have to say (or so he says anyway). He’ll tell you he assesses things on a case by case basis.
The key thing i always tried to emphasise with them was the crash i had 3 weeks after stopping the drug. Which is the timeline quoted on this website and seems the most common point at which we crash. You can mention that’s when DHT is returning to our bodies.
You can describe the very obvious side effects when we crash, which i would say is: the sudden shrinking and desensitising of genitals, the disconnection from genitals, erectile dysfunction, the brain fog, inability to sleep, inability to piss properly, the weird draining feeling that seems to last for hours and fatigue.
And then if you refer him to propeciahep.com, this is pretty much the exact set of events experienced by hundreds/ thousands of people on this site. I just don’t think he would ever bother about reading this site. If he did i just can’t see how he could not recognise this problem a genuine.
When i asked him about the MHRA he said something along the lines of ‘they must be sitting there pretty smug with themselves because i’ve told them about these patients coming to my office every week’.
He also recognises that the 2% quoted by Merck as the number of users that will be affected by erectile dysfunction while on the drug, is more like 20%.
He does give up some of his time for free and will even go for a beer with you.
That’s what so frustrating, that he’ll listen to you but then you feel he hasn’t really listened to you. In the end you feel like if it isn’t a documented illness that can be measured by his hormone tests, then the illness doesn’t exist.
But i very much doubt he has any interest in Merck, he’s only got an interest in his own methods as the King of Endocrinology in the UK.
Obviously if your paying him money hes going to atleast pretend hes interested in what you have to say.
But I have met consultants who let on that they agreed with me then I later find out they don’t believe in PFS.
Until PSF can be proved beyond doubt there is little point in going to most doctors.
In the end I chose not to see Bouloux myself. I saw a urologist through the NHS at a local hospital - I basically had the same experience I believe I would have had if I’d seen Bouloux, but for far less $$$: they take lots of tests, all of which come back normal - and after this they conclude that your problem is psychological.
This situation won’t change until the results of the current American university studies come back. If we suppose the outcome of these studies shows that there is some genuine abnormalities, then they will have to listen. This is because you will then sit in their office with the print outs and show them the evidence which undermines their fundamental beliefs about what they think they know.
However after this the next issue is: treatment and whether anything can be done.
The difference with paying privately is it allows you to debate the issue with the consultant for as long as you’re willing to pay. If you are willing to pay to see him and for expensive hormone tests, he’ll probably take you and the issue more seriously. If you go to the NHS, they’ll dismiss you after the first appointment and see you as a waste of anymore of their resources.
If there are positive results form the American studies, it appears they will have to be pretty conclusive to get someone like Bouloux on our side. I saw him in 2010 when there were no sophisticated American Studies, no PFS Foundation that has raised $100K’s, no scientific publications, conferences, no litigation claims, all the reportage in the media and of course the label changes on the propecia leaflet. I knew he was stubborn but i am still shocked and angry he is still sitting on the fence as he could have been a major voice for us.
Also he is contacting patients about doing a follow up questionnaire and study, so he’ll know their lives haven’t changed in the years since he saw them. So apart from all evidence pointing towards there being some truth in the Post Finasteride Syndrome rather than a bunch of guys who have created all this through mass hysteria. You have to ask why does he think these men would put their lives on hold for so long and be so unrelenting in their effort to claim their lives back?
On on hand i thought he would have revelled in being nominated as the champion of UK PFS victims, especially having seen so many victims. Like i say, he does seem a very decent guy. But i know medical professionals in the UK have to follow a very strict and conservative code and there is definitely an unwillingness to upset the medical establishment. He’s also nearing retirement and maybe he just doesn’t want the hassle or to risk having his reputation put on the line.
Mark, during your recent appointment did Prof Bouloux mention anything to you about ‘a study’ he is conducting into PFS? By the sounds of things, he is asking ex patients to come to London for 24hrs to wear one of those penis erection monitor machines.
I’ve had a couple of calls from Rathore Ali and ‘Sarah the nurse’ asking about getting involved in this and it initially seemed hardly worth my time, money and effort to go to London. Especially when he believes it’s all psychogenic after 80 odd patients.
On the hand i could see us benefitting from this study in 2 ways:
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We all take part in the study and he sees we all have infrequent erections and/or poor erection strength. This surely disproves his psychogenic theory?
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Prior to taking part in the study, we all make a strong joint statement questioning Prof Bouloux’s position on PFS and the relevance of his study. We have his attention at the moment and it would be a good time to fully update him on PFS progress. We could also send him the PFS Foundation address letter, info on the American studies, the scientific publications and something from the conference in Italy.
My view is we should do both.
Thoughts?
He is already aware of said studies and publications. See my PM.
After speaking with Prof Bouloux’s team regarding the Nocturnal Penile Tumescence (NPT) study, the intention is to prove PFS is physiological in nature. So perhaps Prof Bouloux is still keeping an open mind at this point.
I asked why this test wasn’t available to me years ago and i was told it is difficult to get hold of these machines. Whatever the reason, the study should hopefully provide an impetus for Bouloux to take some further action on our behalf. It would therefore be helpful if as many of us took part in the study as possible.
It’s also probably not a good idea to do anything collectively where Prof Bouloux is concerned, if he believes part of the problem is collective internet discussion. It sounds like he is fully up to date with where we are with PFS as well.
From what i understand, the results of this test would show a problem with circulation or nerve damage. I’m not sure if this helps us in terms of providing us with much insight into PFS but we should probably just go with it and see where he takes it once the results are in.
Call me cynical but this study looks like he’s trying to keep cashing in on the PFS pound. Reminds me of Dr Jacobs saying something similar and then attempting to recruit for his own study. If a study appears then good, but it will have his name on it to push himself as the go to guy for UK sufferers, at considerable expense.
From what i’ve been told, the NPT investigation isn’t being carried out to publish anything it’s just to confirm whether PFS is psychogenic or not (for Prof Bouloux of course). The interesting thing will be where he takes us after that because the results will surely prove it’s not psychogenic.
Maybe he has milked the situation financially over the years, but i don’t believe for a second he’s in this for the money or for any other sinister motive. If he’s referring people to the NHS and openly admitting he has no treatment for people, this further back this up. Perhaps he’s starting to feel guilt over such inaction over the years or he’s just doubting his previous diagnoses. Either way, hopefully the results are a catalyst for him doing something much bigger for us.
I can’t imagine there is a better placed person to help us on so many levels in the UK. He has influence with the MHRA. He has vast medical knowledge on endocrinology and hormonal treatments. He has access to funding and research. Plus, all the patient time and money has already been funnelled towards him.
I would like to chime in and say that I feel this is a positive move on his part and I look forward to seeing the results of any tests which may take place.