Free Flow Discussion about POIS

[demografx]

Cross posted from "Propranolol (Betablocker) reduced the intensity of my POIS by atleast 75%" thread.

This post about beta-blockers tends to confirm that POIS is not a unique syndrome, but a family of syndrome having the same trigger (ejaculation), and that there will not be one, unique treatment for all POIS cases.

Excellent point.

It took me a long time reading many POISer experiences (e.g., in "b_jim" 's POIS cases) before that became clear to me.

[demografx]

Cross-posted from Hydrogen Peroxide thread:

...let's A L L  -- please! -- refrain from publicly (or privately) disparaging or belittling another forum member. Let's leave that to competing politicians running for office!

Even if someone (anyone) is breaking the rules here, let's give them the human respect they deserve. Even if it ultimately means banning them for severe breach of rules, they still don't deserve our personal attacks.

Oldtimers: let's all take the HIGHER ground

As the rules state, this is a very successful forum because it was designed as a
F R I E N D L Y  forum, one where people can feel
S A F E  to express themselves. I've seen people "freeze" and stop posting for days whenever there are people-conflicts and
ad-hominem-style NAME CALLING. It creates a very negative and forum-detrimental experience.

People wonder when they see an interpersonal attack: "Am I next??"

And it's totally unnecessary. We can solve problems without attacks related to interpersonal anger and hostility.

I deeply appreciate your cooperation.

[demografx]

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#.

[demografx]

[demografx]

Thanks to Daveman and hosting team to get us back up & running!

Software glitch.

Sorry for the inconvenience,
Demo

[Quantum]

Thanks to Daveman and hosting team to get us back up & running!

Software glitch.

Sorry for the inconvenience,
Demo

Thanks to Daveman and Demo !

[demografx]

Thanks to Daveman and hosting team to get us back up & running!

Software glitch.

Sorry for the inconvenience,
Demo

Thanks to Daveman and Demo !

Thank you, Quantum!

[demografx]

Yahoo! general audience publication article about POIS from 2015:

"The Crazy Reason This Man Never Wants To Orgasm"
By Amy Rushlow
https://www.yahoo.com/beauty/the-crazy-reason-this-man-never-wants-to-orgasm-110191674787.html

[demografx]

I'm afraid to ask!......

[demografx]

More...

[demografx]

[certainlypois2]

lol, i read some more on it the moment you posted because that is crazy. A study showed pigs have on average have long ass orgams, average about 5 minutes. The 31 mins comes one pig in the same study.

[demografx]

lol, i read some more on it the moment you posted because that is crazy. A study showed pigs have on average have long ass orgams, average about 5 minutes. The 31 mins comes one pig in the same study.

Boars might have the longest orgasms (I also asked an expert privately)
https://www.reddit.com/r/askscience/comments/hwtou/how_long_does_a_pigs_orgasm_last_which_animal_has/

[Jimmy]

Hi All,

It seems that there is new publication on POIS ( actually not sure if this been posted here or not ). Here is the link:

http://tau.amegroups.com/article/view/11107/11778

[demografx]

Hi All,

It seems that there is new publication on POIS ( actually not sure if this been posted here or not ). Here is the link:

http://tau.amegroups.com/article/view/11107/11778

THANK YOU, Jimmy!

[Quantum]

Hi All,

It seems that there is new publication on POIS ( actually not sure if this been posted here or not ). Here is the link:

http://tau.amegroups.com/article/view/11107/11778

Thanks a lot for the link, jimmy!  It has not been posted here yet.  And it is interesting!

It is a very good review article by Dr Waldinger, in which he sums up all of his ideas and previous work about POIS.  the 5 criterias defining the clinical presentation of POIS, the 7 clusters of symptoms he has defined, the hyposensitization treatment of POIS with autologous semen, discussion on the antigen, and so on.

But what surprises me is that he also add some new ideas, without citing any previous work, and seems to give some hints about his current work !

As an example, the article says "In 2015 Waldinger reported the occurrence of POIS before and after sterilisation in three men. This phenomenon means that the AG is most likely not bound to the spermatozoa but associated with the seminal fluid."  and "Indirect clinical evidence suggests that the Ag triggering the POIS systemic reaction is not bound to spermatozoa but to seminal fluid produced by prostatic tissue "" This is not linked to any references, so this may come from a speech he has given or else, it is not specified.  Take note that we came to a similar conclusions on the forum, that is, that the antigen is not linked to the semen/spermatozoa but likely to fluids from prostate or seminal glands or Cowper's glands ( see this thread: http://poiscenter.com/forums/index.php?topic=1555.0 ).  Sure, our forum's threads have no value in the scientific world, but now, this mention in Waldinger's  review article gives this hypothesis a worldwide scientific credibility.

Elsewhere in the article, it is written that ""To find the Ag in the seminal plasma that causes the auto-immune reaction is of utmost importance for a better understanding of and finding an effective treatment of POIS.", Ag= antigen .  I feel this means that current work of Dr Waldinger on POIS is about searching for the possible antigen in prostate fluid.  We heard about an ongoing search of Dr Waldinger.  I suppose this is the purpose of this current study.  I also feel that this review article is a way to summarize what is known up to now about POIS and set the stage for the results that may come next year from his current study.     

It is also written in this review article that " The physical and cognitive symptoms of POIS are produced by some specific cytokines that are released by the immunological reaction occurring during ejaculation." and " POIS is not associated with increased total serum IgE concentrations. On the contrary, there are indications that POIS is triggered by specific cytokines that are released by an auto-immune reaction to the man’s seminal fluid.".   The part saying that IgE are normal in POIS sufferers has been published in his 2004 paper.  But I am not aware that Dr Waldinger has ever written before about specific cytokines being the possible mediators of the hypersensitivity reaction.  He does not define further which cytokines he refers to, but by digging reference 2 and reference 3, at the end of the article, you can get some idea of what he has in mind.

From reference 2 in the article ( Vial T, Descotes J. Clinical toxicity of cytokines used as haemopoietic growth factors. Drug Saf 1995;13:371-406. [Crossref] [PubMed] ), you read:  " Flu-like and constitutional symptoms, sometimes dose-limiting, have been reported with IL-1, IL-3, IL-4 and IL-6, while M-CSF was occasionally associated with such adverse effects. More specific adverse events, also frequently considered as dose-limiting toxicities, include hypotension with IL-1, severe headache or skin rash with IL-3, and nasal congestion and gastroduodenal lesions with IL-4. Severe capillary leak syndrome has been reported only with IL-4."  Many of these effects have been mentioned as POIS symptoms, and considering the complexity of the immune system, it may be considered that the general idea is valid, and may explain many different symptoms not listed here.

I think you may have already noticed that I am very enthusiastic about the auto-immune hypothesis of Dr Waldinger, and that I have myself written a lot about my opinion on the role of pro-inflamatory cytokines as a cause of certain clusters of POIS symptoms, so these affirmations by Dr Waldinger about the role of cytokines in the physiopathology of POIS are just further reinforces my opinion.

I will copy this in the research section, I feel the link to this great paper may get lost in this huge thread.

Thanks again jimmy!

[demografx]

.

I will copy this in the research section, I feel the link to this great paper may get lost in this huge thread.

This huge thread was designed for "random thoughts/ideas/comments", but also as a "jumping-off place" to start a new thread when anyone desires.

[demografx]

While searching for comments about the changes in DSM-5, I have found that POIS is mentioned, along with some referenced basic information, in the wikipedia page about sexual dysfunctions, which is great: 

https://en.wikipedia.org/wiki/Sexual_dysfunction#Post-orgasmic_diseases 

Re-posting this above to remind me to put this on our Welcome Page!

[demografx]

I wonder where Wikipedia picked up on muscular pain being the predominant POIS symptom...

[demografx]

...but it's great to see POIS listed in multiple Wikipedia topics.