Re: European - Dutch Professor Waldinger - adresses PSSD

[Guest guest]

I would be interested in being part of your plans and Waldinger's research

group. This is exactly the type of action that we need to take to make real

progress with PSSD, so I agree with your approach. The condition obviously needs

to be the subject of proper research by medical practitioners that believe in it

and who are interested in it.

I had actually been thinking recently of going to see Waldinger - the UK doctor

that I see about PSSD recommended him to me a while ago (I've had PSSD for 5

years). So, I will happily go and see Waldinger and try to make the case as to

why he should lead a research project for people with PSSD and maybe we can all

meet in the Netherlands.

I am based in the UK and can get to the Netherlands relatively easily.

>

> Dear all,

>

> Me and 2 other PSSD sufferors have close contact with Professor Waldinger in

the Netherlands.

>

> Professor Waldinger is Psychiatrist and Neurologist and is specialized in

sexuality. He has a reknown name in the world of psychiatry and sexuality.

>

> He is familiar with PSSD, has seen cases in the past. He is, as many of us,

still just hypothesizing what could be the cause of our syndrome.

>

> He is however underlining that SSRI can cause PSSD, and is open to have a

dialogue. He has prescribed requip to one of us to try and elavate libido.

>

> We as a group of 3 however do not serve as a large enough population for him

to do research. secondly he thinking about writing an article about PSSD but

would need more people;

>

> therefor,

>

> we are looking for fellow PSSD'ers living in the Netherlands or in a neirby

country, to get in contact with each other, and try to persuade Waldinger to

publish about our syndrome, and/or serve as a research population.

>

> hope to find some respons here!

>

> thanks in advance,

>

> Sebastiaan, Freek and

>

[Guest guest]

Hi,

Thanks for your respons! Flying in to the Netherlands is not as easy as taking

the car and drive for a few hours, but I can surely understand willingness to

come, regarding your pssd!

To certain extend we need to coordinate the dialogue with Waldinger ourself.

He has a very busy scedule; even working on saturdays and sundays to treat all

his patient / coordinate his work.

Nevertheless he is a reknown and appreciated professor.

The symptoms we have differ from each other.

It would be good to create our own repport on the information we can provide

ourselves.

Could you provide your symptoms aswell?

I will send you my private gmail account by private (yahoo) mail

Case 1: (myself): erectyle disfunction / no - to limited libido (Paxil for 2

months)

Case 2: Partly Genital anistasia / Blatter disfunction / no - limited libido

(Prozac for 2 months)

(libido brought back by the use of alcohol after a period of taking

requip (in a high dosis))

Case 3: Complete Genital anistasia (Paxil for 10 months)

I have an appointment in the beginning of januari and will discuss/propose

possibilities.

Prof. Waldinger does not have the answer to PSSD, but does hypothesize about a

method to cure the syndrome. In (very) short.

the sexual function is a cascade of different neurotransmittor(s) (systems)

serotenine, dopamine, Gaba and glutomine etc. His theory is that genetic

alterations in these system alter the " code " which is needed to trigger sexual

respons (libido) or sensitivity. Secondly this genetic sensitivity is only

applicable to certain people with certain genetics.

for some reason the overdose of Serotenine from the SSRI's has instructed the

Gaba system (blocking system) to block sexual responses more thoroughly than

normal. The Glutomine (activating system)is not able to undo this change or just

to certain extend. dopamine is not properly interacting aswell, one of the

reasons requip (dopamine agonist) is somethimes only partly effective (in the

case of one of us).

> >

> > Dear all,

> >

> > Me and 2 other PSSD sufferors have close contact with Professor Waldinger in

the Netherlands.

> >

> > Professor Waldinger is Psychiatrist and Neurologist and is specialized in

sexuality. He has a reknown name in the world of psychiatry and sexuality.

> >

> > He is familiar with PSSD, has seen cases in the past. He is, as many of us,

still just hypothesizing what could be the cause of our syndrome.

> >

> > He is however underlining that SSRI can cause PSSD, and is open to have a

dialogue. He has prescribed requip to one of us to try and elavate libido.

> >

> > We as a group of 3 however do not serve as a large enough population for him

to do research. secondly he thinking about writing an article about PSSD but

would need more people;

> >

> > therefor,

> >

> > we are looking for fellow PSSD'ers living in the Netherlands or in a neirby

country, to get in contact with each other, and try to persuade Waldinger to

publish about our syndrome, and/or serve as a research population.

> >

> > hope to find some respons here!

> >

> > thanks in advance,

> >

> > Sebastiaan, Freek and

> >

>

[Guest guest]

What Drugs does Mr Waldinger want to experiment with. To: SSRIsex Sent: Friday, December 16, 2011 8:16:02 AM Subject: Re: European - Dutch

Professor Waldinger - adresses PSSD

Hi,

Thanks for your respons! Flying in to the Netherlands is not as easy as taking the car and drive for a few hours, but I can surely understand willingness to come, regarding your pssd!

To certain extend we need to coordinate the dialogue with Waldinger ourself.

He has a very busy scedule; even working on saturdays and sundays to treat all his patient / coordinate his work.

Nevertheless he is a reknown and appreciated professor.

The symptoms we have differ from each other.

It would be good to create our own repport on the information we can provide ourselves.

Could you provide your symptoms aswell?

I will send you my private gmail account by private (yahoo) mail

Case 1: (myself): erectyle disfunction / no - to limited libido (Paxil for 2 months)

Case 2: Partly Genital anistasia / Blatter disfunction / no - limited libido (Prozac for 2 months)

(libido brought back by the use of alcohol after a period of taking requip (in a high dosis))

Case 3: Complete Genital anistasia (Paxil for 10 months)

I have an appointment in the beginning of januari and will discuss/propose possibilities.

Prof. Waldinger does not have the answer to PSSD, but does hypothesize about a method to cure the syndrome. In (very) short.

the sexual function is a cascade of different neurotransmittor(s) (systems) serotenine, dopamine, Gaba and glutomine etc. His theory is that genetic alterations in these system alter the "code" which is needed to trigger sexual respons (libido) or sensitivity. Secondly this genetic sensitivity is only applicable to certain people with certain genetics.

for some reason the overdose of Serotenine from the SSRI's has instructed the Gaba system (blocking system) to block sexual responses more thoroughly than normal. The Glutomine (activating system)is not able to undo this change or just to certain extend. dopamine is not properly interacting aswell, one of the reasons requip (dopamine agonist) is somethimes only partly effective (in the case of one of us).

> >

> > Dear all,

> >

> > Me and 2 other PSSD sufferors have close contact with Professor Waldinger in the Netherlands.

> >

> > Professor Waldinger is Psychiatrist and Neurologist and is specialized in sexuality. He has a reknown name in the world of psychiatry and sexuality.

> >

> > He is familiar with PSSD, has seen cases in the past. He is, as many of us, still just hypothesizing what could be the cause of our syndrome.

> >

> > He is however underlining that SSRI can cause PSSD, and is open to have a dialogue. He has prescribed requip to one of us to try and elavate libido.

> >

> > We as a group of 3 however do not serve as a large enough population for him to do research. secondly he thinking about writing an article about PSSD but would need more people;

> >

> > therefor,

> >

> > we are looking for fellow PSSD'ers living in the Netherlands or in a neirby country, to get in contact with each other, and try to persuade Waldinger to publish about our syndrome, and/or serve as a research population.

> >

> > hope to find some respons here!

> >

> > thanks in advance,

> >

> > Sebastiaan, Freek and

> >

>

[Guest guest]

Can you ask him about alcohol? How does alcohol make certain things worse such

as genital numbness?

> > >

> > > Dear all,

> > >

> > > Me and 2 other PSSD sufferors have close contact with Professor Waldinger

in the Netherlands.

> > >

> > > Professor Waldinger is Psychiatrist and Neurologist and is specialized in

sexuality. He has a reknown name in the world of psychiatry and sexuality.

> > >

> > > He is familiar with PSSD, has seen cases in the past. He is, as many of

us, still just hypothesizing what could be the cause of our syndrome.

> > >

> > > He is however underlining that SSRI can cause PSSD, and is open to have a

dialogue. He has prescribed requip to one of us to try and elavate libido.

> > >

> > > We as a group of 3 however do not serve as a large enough population for

him to do research. secondly he thinking about writing an article about PSSD but

would need more people;

> > >

> > > therefor,

> > >

> > > we are looking for fellow PSSD'ers living in the Netherlands or in a

neirby country, to get in contact with each other, and try to persuade Waldinger

to publish about our syndrome, and/or serve as a research population.

> > >

> > > hope to find some respons here!

> > >

> > > thanks in advance,

> > >

> > > Sebastiaan, Freek and

> > >

> >

>

[Guest guest]

Hi,

It is not so much " experimenting " Waldinger wants to do.

He has prescribed one of us Requip, but before prescribing more types o medicine

he needs a proper hypothesis about PSSD. As of us 3 we are not a consistent

population; more patients, more

Secondly we want to discuss te way to go forward with Waldinger on establishing

a medical article. waldinger as a professor has significant name and influence

to strenghten our case and outline our problems to the medical world.

I am willing to act as a coordinator in the efforts to cooperate with professor

Waldinger on behalf of our PSSD problem:

- Make our problem more reknown in the medical world;

- establish research on cause and treatment.

>

> What Drugs does Mr Waldinger want to experiment with.

[Guest guest]

I wonder if Synthroid thyroid medications cause sexual dysfunction. To: SSRIsex Sent: Saturday, December 17, 2011 8:26:36 AM Subject: Re:

European - Dutch Professor Waldinger - adresses PSSD

Hi,

It is not so much "experimenting" Waldinger wants to do.

He has prescribed one of us Requip, but before prescribing more types o medicine he needs a proper hypothesis about PSSD. As of us 3 we are not a consistent population; more patients, more

Secondly we want to discuss te way to go forward with Waldinger on establishing a medical article. waldinger as a professor has significant name and influence to strenghten our case and outline our problems to the medical world.

I am willing to act as a coordinator in the efforts to cooperate with professor Waldinger on behalf of our PSSD problem:

- Make our problem more reknown in the medical world;

- establish research on cause and treatment.

>

> What Drugs does Mr Waldinger want to experiment with.

[Guest guest]

I really hope Dr Waldinger will help with: trying to treat PSSD, with

recognizing the condition, with hypothesizing about what may cause it, and with

publishing about it. I have become too doubting and cynical though. If you look

at Dr. Marcel Waldinger's scientific publications, you can see he has at least

in part built his career on the use of SSRIs to treat premature ejaculation.

Thus, he is invested in the " positive sexual side effects " of SSRIs. In his PE

studies, he does not seem to raise concerns about the undesirable sexual side

effects that for many would likely accompany any attempt to treat PE with SSRIs.

I don't know, but I would assume his research is pharm funded. Investigators

whose studies are funded by pharm tend to shy away from jeopardizing their

funding by bringing attention to problems with the medications. A short-acting

SSRI called Prilogy (Dapoxetine)is already approved in many countries (not yet

the USA) to treat PE, and I would not be surprised if Waldinger's studies

contributed to getting it approved.

> >

> > What Drugs does Mr Waldinger want to experiment with.

>

[Guest guest]

Sounds promising and interesting. To: "SSRIsex " <SSRIsex > Sent: Saturday, December 17, 2011 6:22:40 PM Subject: Re: Re: European - Dutch

Professor Waldinger - adresses PSSD

I wonder if Synthroid thyroid medications cause sexual dysfunction. To: SSRIsex Sent: Saturday, December 17, 2011 8:26:36 AM Subject: Re:

European - Dutch Professor Waldinger - adresses PSSD

Hi,

It is not so much "experimenting" Waldinger wants to do.

He has prescribed one of us Requip, but before prescribing more types o medicine he needs a proper hypothesis about PSSD. As of us 3 we are not a consistent population; more patients, more

Secondly we want to discuss te way to go forward with Waldinger on establishing a medical article. waldinger as a professor has significant name and influence to strenghten our case and outline our problems to the medical world.

I am willing to act as a coordinator in the efforts to cooperate with professor Waldinger on behalf of our PSSD problem:

- Make our problem more reknown in the medical world;

- establish research on cause and treatment.

>

> What Drugs does Mr Waldinger want to experiment with.

[Guest guest]

I agree in what you are saying; although I dont fully agree on him being funded

by the big Pharma...this is something which is tightly regulated in the

Netherlands.

never the less...He is a Psychiatrist...meaning he has been educated to

prescribe Anti-depressents and make a living out of it...these type of people

have...definately...made me very sceptical and cynical aswell. If it wasn't for

their " world " science I wouldn't have had my piece of PSSD.

But,

Trying to fight for our cause, PSSD has to pushed into the open.

Waldinger is a prof. open for a dialogue...underlining PSSD. it seems like a

valid option to try. He has given no signals of unnwillingness up till now. I do

think however we need to go forward in a collaborative way. Else we will not be

able to provide enough " muscle " in a dialogue with him.

and in case of failure? I will keep on trying to get it into the open through

the next medical person " willing to put his hands into the fire " .

I surely hope more people from Europe are willing to contact me,

Currently I received 2 replies;

> > >

> > > What Drugs does Mr Waldinger want to experiment with.

> >

>

[Guest guest]

Can prof. Waldinger do an exploratory research among all members of this PSSD

group? He could do that via email, telephone or Skype. Such a preliminary study

can draw the attention of other researchers to conduct further studies about

PSSD. And it can alert authorities and health care professionals worldwide to

these long lasting side effects of SSRIs.

>

> Dear all,

>

> Me and 2 other PSSD sufferors have close contact with Professor Waldinger in

the Netherlands.

[Guest guest]

Speaking for myself, I'd be very happy to share my story with Professor

Waldinger via email or whatever.

> >

> > Dear all,

> >

> > Me and 2 other PSSD sufferors have close contact with Professor Waldinger in

the Netherlands.

>

[Guest guest]

Same with me, I would share my story. To: SSRIsex Sent: Wednesday, January 11, 2012 5:41:41 PM Subject: Re: European - Dutch Professor Waldinger - adresses

PSSD

Speaking for myself, I'd be very happy to share my story with Professor Waldinger via email or whatever.

> >

> > Dear all,

> >

> > Me and 2 other PSSD sufferors have close contact with Professor Waldinger in the Netherlands.

>

[Guest guest]

Count me in.

Kv

> > >

> > > Dear all,

> > >

> > > Me and 2 other PSSD sufferors have close contact with Professor Waldinger

in the Netherlands.

> >

>

[Guest guest]

In case you haven't already, can you please e-mail these scientific studies on PSSD to Dr Waldinger.

http://www.ncbi.nlm.nih.gov/pubmed/18173768

http://www.ncbi.nlm.nih.gov/pubmed/16709553

http://205.196.123.12/dcaefi2u15og/llbqps2wuamfdmq/06_09_pssd_bahrick.pdf

http://205.196.122.17/98m778dp70og/ecbr82l82aqlz7l/07_prolonged+post-treatment+genital+anesthesia+_kauffman.pdf

>> Dear all,> > Me and 2 other PSSD sufferors have close contact with Professor Waldinger in the Netherlands.> > Professor Waldinger is Psychiatrist and Neurologist and is specialized in sexuality. He has a reknown name in the world of psychiatry and sexuality.> > He is familiar with PSSD, has seen cases in the past. He is, as many of us, still just hypothesizing what could be the cause of our syndrome.> > He is however underlining that SSRI can cause PSSD, and is open to have a dialogue. He has prescribed requip to one of us to try and elavate libido. > > We as a group of 3 however do not serve as a large enough population for him to do research. secondly he thinking about writing an article about PSSD but would need more people;> > therefor,> > we are looking for fellow PSSD'ers living in the Netherlands or in a neirby country, to get in contact with each other, and try to persuade Waldinger to publish about our syndrome, and/or serve as a research population.> > hope to find some respons here!> > thanks in advance,> > Sebastiaan, Freek and >