Author Topic: Free Flow Discussion about POIS  (Read 1002054 times)

Vandemolen

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Re: This may seem like a familiar place.
« Reply #1680 on: February 13, 2016, 08:16:57 AM »
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

demografx

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Re: This may seem like a familiar place.
« Reply #1681 on: February 13, 2016, 10:52:09 AM »

Just a periodic reminder to
please bookmark this site:
https://groups.google.com/forum/m/?hl=en#!forum/poiscenter

If you ever experience any unforeseen technical difficulties here!

It is our alternate/emergency POISCenter site at Google Groups.



« Last Edit: March 04, 2016, 07:11:30 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Pflug

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If you had to guess
« Reply #1682 on: February 13, 2016, 01:15:45 PM »
Hi Demo,
Sorry for asking this question. You probably get asked 100 times a month. But if you had to guess, when will we know the findings of the study being done at Rutgers? Thanks


Pflug
Complete loss of focus, extreme fatigue, sweating, nasal irritation, joint pain, headaches and depression. Takes a full week to feel normal again. Hiding from life. Praying for a cure.

demografx

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Re: This may seem like a familiar place.
« Reply #1683 on: February 13, 2016, 02:39:36 PM »
Hi Demo,
Sorry for asking this question. You probably get asked 100 times a month. But if you had to guess, when will we know the findings of the study being done at Rutgers? Thanks


Pflug

"So excited to hear about the Rutgers study! I realize it's all very preliminary, but it's definitely exciting to see some movement. Thanks to the research team, Stef, POIS participants, and NORD for all your work so far! What are next steps in terms of the study? Are there more interim reports coming out? What sort of timeline are we looking at?"

Hi, Hoping (and Everyone),

The Rutgers study is a one-year study. There was a several-month delay in starting it due to the IRB Committee having questions, needing clarifications, etc., so NORD's MAC granted Dr. K. a one-year extension. This is why iit all moved at a snail's pace at the beginning.

(IRB delays are expected, because patient safety is paramount and every step has to be entirely understood and approved. Also, iit's lkely that none of the committee members had ever heard of POIS, so there may have been more questions than usual.)

Based on the paragraph provided by Dr. Komisaruk, it sounds like the study is moving full-steam ahead at this point. It has another six months, and should be completed around April or May 2016. The final report is due within 60 days of completion. So, the next (final) report should be received by NORD in June or July at the latest.

Dr. Komisaruk will undoubtedly write a paper with all the details, and it will be published in a reputable mefical journal. You'll all be able to read it, word for word, once it's published. With luck his paper will be accepted and published quickly.

I hope that was helpful!

Best wishes,
Stef
« Last Edit: February 13, 2016, 02:59:50 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #1684 on: February 28, 2016, 12:50:26 PM »
« Last Edit: February 28, 2016, 12:53:57 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #1685 on: February 28, 2016, 09:33:18 PM »
Welcome to POISCenter!
 



Here are some POIS resources which may be helpful to you:

We are proud to announce our first POIS research grant, awarded in December, 2013, to be managed for us by the National Organization for Rare Disorders (NORD). Grant awarded to:

Barry Komisaruk, PhD (Principal Investigator), Distinguished Professor of Psychology
Rutgers University
Newark, New Jersey, USA
Study title: Is POIS a Case of Vagal Dystonia? -- An fMRI Brain Activity Analysis

More about our Grant:
You can start here, continue reading following pages and other forum threads:
http://poiscenter.com/forums/index.php?topic=426.msg11042#msg11042

Click here to see Mat780's excellent YouTube POIS Channel.   Mat's YouTube videos include (1) our great new April 12 POIS TV Documentary. A must-see. And (2) The Learning Channel documentary, featuring our forum member "Animus".

Click here to see The POIS reddit post.  Outsiders (non-POISers) spontaneously gifted NORD's POIS Research Grant $1,000+ from this reddit post. Thanks to "mellivora" and "CertainlyPOIS"!

Our POIS Forum - architectural genius: "Daveman" - for detailed subject-by-subject discussion.
http://www.POISCenter.com/forums/index.php

Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

The POIS Information Website is home to the POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.

Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:
http://www.youtube.com/watch?v=UWBxAUC9k1g


Abstract links to early POIS Research Studies:

http://www.ncbi.nlm.nih.gov/pubmed/11995603

http://www.ncbi.nlm.nih.gov/pubmed/21241453

http://www.ncbi.nlm.nih.gov/pubmed/21241454

http://www.ncbi.nlm.nih.gov/pubmed/25630453

http://onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2010.01707.x/abstract

Poster Presentation: http://f1000research.com/posters/1758

http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1


New York Times article,

January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse


To send a Private Message, click on messages link at the very top of this page. Then click "Send Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.



- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN YOUR HEAD'! "

Good article for those of you whose physicians tell you, "POIS is all in your head," :
http://psychcentral.com/blog/archives/2010/10/04/its-all-in-your-head-living-with-chronic-illness/




It can be very  helpful to you when dealing with medical professionals to point this out. Click to see

POIS' official listing, as recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research
:


And in Europe: Orphanet now lists POIS on their website. - Click here.

The Post Orgasmic Illness Syndrome (P.O.I.S.) Forum is listed in the organization database of the National Organization for Rare Disorders (NORD) -- http://poiscenter.com/forums/index.php.  The link for this, through their home page, is --
http://rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail.


POIS also appears in credible medical sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal (Dr. Selwyn Dexter's study), and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For over 5 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus our pages have been read nearly 2,000,000 times. Not bad for a rare malady.

Show some of this to your doctor - with pride. Chances are, you know far more about POIS than s/he does. Don't be intimidated by fancy diplomas. It's almost impossible for any one doctor to know much about POIS before you walk into his/her office. Unfortunately, it's up to you to educate them. And if you happen to find yourself with a disagreeable "student"-doctor (you're the teacher), find another doctor. Quickly!

SEARCH THE NSF FORUM ARCHIVES WITH GOOGLE

We have an overwhelming amount of NSF data: more than 5 years' worth of posts (over  10,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/

for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/

and 740 results came up for "nocturnal emission" within the Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #1686 on: February 29, 2016, 11:39:22 PM »

Dr. Komisaruk will undoubtedly write a paper with all the details, and it will be published in a reputable medical journal [bold edit -demo]. You'll all be able to read it, word for word, once it's published.
And when it's published, we POISers can take a reprint of the medical journal article into any POIS-skeptical doctor's office and say, "Stop scratching your head and read this!"
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Prancer

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Re: This may seem like a familiar place.
« Reply #1687 on: March 04, 2016, 01:28:22 AM »

Dr. Komisaruk will undoubtedly write a paper with all the details, and it will be published in a reputable medical journal [bold edit -demo]. You'll all be able to read it, word for word, once it's published.
And when it's published, we POISers can take a reprint of the medical journal article into any POIS-skeptical doctor's office and say, "Stop scratching your head and read this!"

Absolutely demo!! Can't wait to see it!

mood: very optimistic!

demografx

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Re: This may seem like a familiar place.
« Reply #1688 on: March 04, 2016, 12:52:23 PM »
Prancer, your enthusiasm is infectious :)
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #1689 on: March 06, 2016, 01:36:40 AM »


Just a periodic reminder to
please bookmark this site:
https://groups.google.com/forum/m/?hl=en#!forum/poiscenter

If you ever experience any unforeseen technical difficulties here!

It is our alternate/emergency POISCenter site at Google Groups.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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  • All of us working together to defeat POIS!
Re: This may seem like a familiar place.
« Reply #1690 on: March 06, 2016, 08:30:17 PM »
Welcome to POISCenter!
 



Here are some POIS resources which may be helpful to you:

We are proud to announce our first POIS research grant, awarded in December, 2013, to be managed for us by the National Organization for Rare Disorders (NORD). Grant awarded to:

Barry Komisaruk, PhD (Principal Investigator), Distinguished Professor of Psychology
Rutgers University
Newark, New Jersey, USA
Study title: Is POIS a Case of Vagal Dystonia? -- An fMRI Brain Activity Analysis

More about our Grant:
You can start here, continue reading following pages and other forum threads:
http://poiscenter.com/forums/index.php?topic=426.msg11042#msg11042

Click here to see Mat780's excellent YouTube POIS Channel.   Mat's YouTube videos include (1) our great new April 12 POIS TV Documentary. A must-see. And (2) The Learning Channel documentary, featuring our forum member "Animus".

Click here to see The POIS reddit post.  Outsiders (non-POISers) spontaneously gifted NORD's POIS Research Grant $1,000+ from this reddit post. Thanks to "mellivora" and "CertainlyPOIS"!

Our POIS Forum - architectural genius: "Daveman" - for detailed subject-by-subject discussion.
http://www.POISCenter.com/forums/index.php

Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

The POIS Information Website is home to the POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.

Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:
http://www.youtube.com/watch?v=UWBxAUC9k1g


Abstract links to early POIS Research Studies:

http://www.ncbi.nlm.nih.gov/pubmed/11995603

http://www.ncbi.nlm.nih.gov/pubmed/21241453

http://www.ncbi.nlm.nih.gov/pubmed/21241454

http://www.ncbi.nlm.nih.gov/pubmed/25630453

http://onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2010.01707.x/abstract

Poster Presentation: http://f1000research.com/posters/1758

http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1


New York Times article,

January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse


To send a Private Message, click on messages link at the very top of this page. Then click "Send Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.



- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN YOUR HEAD'! "

Good article for those of you whose physicians tell you, "POIS is all in your head," :
http://psychcentral.com/blog/archives/2010/10/04/its-all-in-your-head-living-with-chronic-illness/




It can be very  helpful to you when dealing with medical professionals to point this out. Click to see

POIS' official listing, as recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research
:


And in Europe: Orphanet now lists POIS on their website. - Click here.

The Post Orgasmic Illness Syndrome (P.O.I.S.) Forum is listed in the organization database of the National Organization for Rare Disorders (NORD) -- http://poiscenter.com/forums/index.php.  The link for this, through their home page, is --
http://rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail.


POIS also appears in credible medical sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal (Dr. Selwyn Dexter's study), and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For over 5 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus our pages have been read nearly 2,000,000 times. Not bad for a rare malady.

Show some of this to your doctor - with pride. Chances are, you know far more about POIS than s/he does. Don't be intimidated by fancy diplomas. It's almost impossible for any one doctor to know much about POIS before you walk into his/her office. Unfortunately, it's up to you to educate them. And if you happen to find yourself with a disagreeable "student"-doctor (you're the teacher), find another doctor. Quickly!

SEARCH THE NSF FORUM ARCHIVES WITH GOOGLE

We have an overwhelming amount of NSF data: more than 5 years' worth of posts (over  10,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/

for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/

and 740 results came up for "nocturnal emission" within the Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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« Last Edit: March 08, 2016, 12:08:30 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #1692 on: March 08, 2016, 07:18:35 PM »
DR. KOMISARUK'S BIOGRAPHY





« Last Edit: March 08, 2016, 10:35:59 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #1693 on: March 11, 2016, 04:09:55 PM »


Cross-posted from "NORD Interim Report for POIS Study"
http://poiscenter.com/forums/index.php?topic=2086.msg18415#msg18415


Professor Komisaruk's 3rd report is due on the 18th of this month. NORD has followed up and asked him to pay particular attention to the public section and inquired of additional recruits since Nightingale and Andy.

They hope to have the report soon!

« Last Edit: March 11, 2016, 06:45:17 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #1694 on: March 26, 2016, 09:38:20 AM »



« Last Edit: March 26, 2016, 09:42:41 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #1695 on: March 29, 2016, 12:41:13 AM »
Amazed @ how you did that, Prancer!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #1696 on: March 29, 2016, 12:56:57 AM »
THANK YOU DEMO!!


Prancer,
                     your



graphic really rocks hops!


« Last Edit: March 29, 2016, 01:12:34 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #1697 on: April 02, 2016, 11:08:24 AM »

If we somehow ever lose track of one another, we can always hook up here:



http://www.thenakedscientists.com/forum/index.php?topic=6576.new#new



« Last Edit: April 04, 2016, 09:59:47 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #1698 on: April 03, 2016, 02:08:01 AM »
I have re-activated the forum named:



POISCenter



~~ at Delphi Forums ~~


http://m.delphiforums.com/poisadmin



LET'S SEE WHICH FORUM BEST SUITS OUR NEEDS!

(Ours here crashed before, so...who knows? Delphi has

been around & stable since the '80's.)


So...let's try some parallel posting!



POIS-free wishes to everyone!!

demo











« Last Edit: April 04, 2016, 09:46:38 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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  • All of us working together to defeat POIS!
Re: This may seem like a familiar place.
« Reply #1699 on: April 04, 2016, 12:05:07 AM »



Eagerly awaiting :)
Maybe with enough of us doing the same, our positive energy will expedite this :)
It's Sunday evening, keep sending positive energy for speedy NORD release of Rutgers' Interim Report #3!
:)



10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business