Prof. Bouloux: PFS is Psychogenic

Therapeutic Efforts Doctors & Therapists
#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

#51

Be careful with bupropion, some have had bad experiences with it.

#52

This guy loves to bump 2-5 year old threads adding no meaningful additions doesn’t he?

#53

I was searching experiences with bupropion, and found this guy recommending buproprion, I didn’t even realize when this thread was from. I don’t think warning that buproprion made some people crash adds “no meaningful additions”. And to be honest, it is irrelevant when the thread is from. People who come here for help start searching all around the forum, so if they find the message recommending buproprion, now they will also see my message telling them to be careful with buproprion :wink:

But I see this bothers you a lot, as I am not the first person you tell this :grin:

Next time you are feeling irritable, remember that this is just a forum for people with PFS, nothing else.

#54

Just like you search for experiences, so does everyone else here. The reason why thread bumping is valuable is because people add insights and experiences as time goes on. If you had said “I went on bupropion and xxx happened,” or even linked a study or other user’s experiences, that would be exponentially more meaningful than bumping a 6+ year old thread with a vague comment about “how some people have had bad experiences.” I see that you took time to link my own comment but didn’t take the time to do the same with your statement about other’s bad experiences.