Prof. Bouloux: PFS is Psychogenic

Therapeutic Efforts Doctors & Therapists
#31

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.

#32

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.

#33

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.

#34

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.

#35

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:

  1. 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?

  2. 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?

#36

He is already aware of said studies and publications. See my PM.

#37

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.

#38

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.

#39

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.

#40

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.

#41

If people don’t fancy travelling to London and staying overnight for Prof Bouloux’s NPT study. They could get referred by their GP to Urology on the NHS and ask for it to be done locally. I’m assuming the equipment is available most places, as my GP has assured me it will be no problem in my area. If you are in contact with Bouloux’s people you could mention this and let them know this is the route you’d prefer to go down as they didn’t seem to have a problem when i mentioned it to them. I’m just going to send them the results when i get them. You could also ask for an ultrasound of your penis and a penile doppler to be carried out for good measure.

#42

If you have trouble getting referred or getting the tests carried out, take with you any correspondence from Prof Bouloux showing the study he is carrying out and that of the American teaching hospitals where they are measuring ‘Penile hemodynamic and sensory parameters’.

#43

I spoke with mr Bouloux too on the phone about a month ago. He is a nice guy, well mannered and honest. He indeed believes that there is a pre existing psychological state where pfs lies upon. He said that trazodone and bupropion are to be considered. I thanked him for his time and hung up. Of course i do not believe this. He is just taking the pure scientific approach which sais that the people who express pfs symptoms are a minority, thus there is something wrong with them, everyone mentions depression,anxiety,panic attacks, so its psychological and the rest of the symptoms derive from this base. I do not blame him he is just thinking in the way he learned in medical school. But a real doctor should be very alarmed when 100 different people with different age,background etc mention the same symptoms from a drug which interferes with hormonal balance. The science of medicine up to this point is still not in a state to deal with issues governing neurosteroids and their connection with hormones. Also, how neurosteroids affect the function of the whole body. It is a new field and lately more and more researchers and doctors are into this. Hopefully in a few years we will know enough to treat out problem. But right now we are on out own and we must be the doctors for ourselves.

1 Like
#44

And also i want to add that after this condition i experienced , i have completely lost my trust towards doctors. Nearly none of the doctors i have visited is aware of this syndrome. And the ones that were aware were telling me that it could not happen with such a low dose i used. I was getting angry as the months were passing and nothing was changing, so I was asking the doctors what is wrong with me. They kept telling me its psychological…Then after reading this forum thoroughly, i understood that everyone here had the same problems and also top US doctors could not solve the problem. And i understood that on this i’m on my own. Nobody can help me except myself. Even my own family believe what the doctors say and not me, as i am not a doctor of course. Its like a movie where some innocent gets in prison and no lawyer wants to get his case, so he studies law in order to defend himself properly. This is how i feel right now and I am dedicated in finding whatever might help me recover as soon as possible.

1 Like
#45

Yes I understand how frustrating it can be, and I believe, and I will say it again…they won’t figure this syndrome out unless they realize that even a mere .25mg can induce this state.

#46

That is what i have been thinking from the start of this, and i believe its a negative reaction from the brain which makes it send the wrong signals. i know from my experience that drugs that interfere with brain chemistry have made my symptoms worse and even new ones.

#47

I have a working theory on exactly what happened if you want to message me Costa. I think I am right on and it accounts for the single dose sufferer

#48

Thats a good analogy. Another way of putting it is that we are like people who have been put in a mental home but are completely sane and doctors wont believe anything we tell them.

#49

Sometimes im feeling like Kyle Reeves from Terminator 1.

Its a Scene who he try to told the Police he came from the Future to save the Mankind from the Terminator the Police told him to shut up because he is crazy.

1 Like
#50

Hi all first time poster and in desparate need of help

I was on propecia for c. 5 years with minimal side effects

Gave up c. 2 years ago and didnt crash, then c. 8months later crash arrives and I got all of the sexual sides in spades

Went to 3 doctors on nhs, all said I was fine and problem was in my head, then visited a urologist and failed a doppler exam. He said I had a venous leak and was damaged for life

In panic, I went private and went to another urologist. Passed the doppler this time and he made me take detailed bloods (the first doc out of 6 whi made me do this)

Bloods came back, my SHBG and Prolactin were off the charts so need to see a goid endo in london…does anyone have any reccomendations? thanks a lot