[demografx]

... an [sic] big part [sic]  POIS is something "spiritual" ... Mantak Chia [books]... Some random things i learned: - With 1 drop of sperm you'll lose... - ... learn to be multi-orgasmic... - Ejaculation is meant for making babies - Age is important, stop masturbating when you reach 30 and find a woman - In spring you can do it more... - Watching porn is very wrong...

patrick_pois: Mantak Chia and most of these type fanciful notions have been thoroughly discredited here. Please search previous posts (searching the 10,000+ posts here is explained in your Welcome Post)

This is a Science Forum and scientific/medical methodology is the approach we take here. There are numerous websites promoting Taoist, "spiritual", and psychological/emotional/intuitive approaches, but we are not one of them.

Welcome to the forum and thanks for cooperating!

[demografx]

patrick_pois, welcome to the POIS thread of The Naked Science Forum!




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

Our new POIS Forum - architectural genius: "daveman" - for detailed subject-by-subject discussion!
http://www.POISCenter.com/forums/index.php
Our 4-year-old POIS thread here at Naked Science Forum will also always remain open for newcomers, for general unstructured discussion, and historical research of the 10,000+ postings here since 2007.

The Learning Channel's (TLC)  feature TV presentation on POIS, featuring our member here at this forum, "Animus". It was aired on May 22, 2011. Here is a link to the file for that TV documentary, "Desperate Measures", which can be downloaded and played. The segment starts at about 12:20..
http://www.fileserve.com/file/cUtJa9R/TITLE01.mp4

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

The POIS Information Website is home to the famous 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:

Our new POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
http://forums.delphiforums.com/POIS/chat


POIS Research Studies, 2011

These 2 papers reveal Dr. Waldinger's POIS autoimmune hypothesis and suggests one possible avenue of treatment.

First POIS Research Study, 2002

We have a copy of the first formal medical investigation on POIS by Prof. dr. Marcel D. Waldinger,MD,PhD, and Dr. Dave Schweitzer, MD.

  
Recent POIS Research Study, 2010

CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781


British Medical Journal Case Report, 2010

Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1


How to get any or all of the above 5 studies: send me or "daveman" a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and we'll send you back the PDF(s).

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

Remember to put a quote around the recipient's name, i.e., "demografx", or "daveman".


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

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

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 OUR HEADS'! "

Also, it can be helpful when dealing with medical professionals to point out the successful existence of our rapidly growing forum, which has already been referenced in respectable sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For over 4 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 over 1,000,000 page visits. Not bad for a rare malady!



SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: more than 4 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#.

[daveman]

I came across an interesting fact while researching the composiition of semen.
Apparently the Seminal Vesicles produce these Prostaglandins, which are "involved in suppressing an immune response by the female against the foreign semen". I thought that was interesting- in terms of the auto-immune theory, because this could be something to investigate regarding POIS. I wonder if they are looking at these prostaglandins more.  I just thought it was interesting. So there is a component of semen which is meant to suppress the immune system.

On Wikipedia:

Seminal Vesicles create:
   amino acids, citrate, enzymes, flavins, fructose (the main energy source of sperm cells, which rely entirely on sugars from the seminal plasma for energy), phosphorylcholine, prostaglandins (involved in suppressing an immune response by the female against the foreign semen), proteins, vitamin C

There are little jewels like this showing up from time to time that I don't want to loose. I'm having temporary trouble getting over to the other forum regularly (internet problems). Is this put in a good place over there, so we won't loose it. In the section that emi_b is organizing maybe. It will be good to have potential desires/ideas for research organized.

Hope I can get to a better access later today.

[Animus]

I came across an interesting fact while researching the composiition of semen.
Apparently the Seminal Vesicles produce these Prostaglandins, which are "involved in suppressing an immune response by the female against the foreign semen". I thought that was interesting- in terms of the auto-immune theory, because this could be something to investigate regarding POIS. I wonder if they are looking at these prostaglandins more.  I just thought it was interesting. So there is a component of semen which is meant to suppress the immune system.

On Wikipedia:

Seminal Vesicles create:
   amino acids, citrate, enzymes, flavins, fructose (the main energy source of sperm cells, which rely entirely on sugars from the seminal plasma for energy), phosphorylcholine, prostaglandins (involved in suppressing an immune response by the female against the foreign semen), proteins, vitamin C

There are little jewels like this showing up from time to time that I don't want to loose. I'm having temporary trouble getting over to the other forum regularly (internet problems). Is this put in a good place over there, so we won't loose it. In the section that emi_b is organizing maybe. It will be good to have potential desires/ideas for research organized.

Hope I can get to a better access later today.

Thanks, daveman! I'll post it over in Emi_b's thread, and we can work with it more later.
best regards to all!

[gabin]

I'd like to share some observations upon myself: last summer I had severe neck muscle pains and was trying to find points from which pain was irradiating. So I pushed heavily on every part of muscle and skin and as a result I got a swollen lymph node on the left side of my jaw.
And one more: in the right back side of head (where most of pain is usually concentrated) I think I have a swollen lymph node right now. So please, check your head too, it's hardly noticable, but still it's possible to find a sort of soft 'ball' almost on the sufrace of skin.
That may add up a bit to a question why we have these severe pains and what's actually (what part of body) causing it.

[jivetalk]

Hi Everyone, I would like to share something I recently found whilst researching what I feel to be the worst of POIS Symptoms. 'Braig Fog'.....Have a Read. Some very interesting observations here.

http://www.drlwilson.com/articles/brain_fog.htm

Please let me know what you think, or if you have seen this before.

[connor]

just a question. how does someone with diagnosed add and depression differentiate what is causing what and what is psycho-somatic. i get a terrible mood and terrible thoughts after ejaculation and the urge to do nothing but lay in bed all day after orgasm, i know that is a fact. these could also be depression related. i know i feel twitchy as hell and my body feels like it's on the fritz after activity.one thing to note is that i lost a lot of my libido after stopping ssris. i also lost partial sexual functioning. i dont know what to attribute to what. i'm only 21 and have had blood tests and they all come out normal. i'm currently on wellbutrin my sex drive seemed to go up, but now it's next to nothing. even worse then before. the feelings i get afterwards though make it a good thing though. id like to note my sexual functioning has nothing to do with my mood, it's just not there, just doesen't work for whatever reason. ssri's cause permanent changes in peoples sexuality so i assume that's what happened. i go from periods of feeling brilliant, to stop, to having no sex drive to having an unquenchable sex drive. this is just all so frustrating

I just jumped out of bed right now when I read this. This is the exact thing that I’m going through right now, the dysphoria and the depression right now after orgasm is unbearable, the POIS symptoms have now reduced to 10-20% of what they were before, but really every time I orgasm I have an extremely strong urge to commit suicide, it’s virtually uncontrollable, I have never ever felt such a strong force, it appears on top of POIS I now have a psycho somatic disorder too, great. I too have been on SSRI’s they made POIS even worse in the long run. I really feel for you and absolutely feel the same way, hang in there.

i have some questions for you. because i think there's a correlation between ssri use and experiencing this, because i don't remember as much as i did when i was on ssri's. do you have add, or did you take any add stimulants. i also get extremely suicidal after orgasm, it really is THAT bad. I am NEVER suicidal, but the hours after ejaculation are the most excruciatingly painful moments i have ever experienced. I can only cope by taking sleeping pills, so i just sleep through the misery


currently i'm feeling better. my libido has been unusually dead for the last 3 weeks and my mood has been completely stable.

this is an important read for all of you


http://www.reuniting.info/science [nofollow]


http://purifyinggrace.com/my-pornography-addiction/masturbation-does-not-cause-the-same-high-as-vaginal-intercourse-study/ [nofollow]

[demografx]

Hi Everyone, I would like to share something I recently found whilst researching what I feel to be the worst of POIS Symptoms. 'Brain Fog'.....Have a Read. Some very interesting observations here.

http://www.drlwilson.com/articles/brain_fog.htm

Please let me know what you think, or if you have seen this before.

Welcome back, jivetalk!

Since your last visit in January:

We started a POIS Research Fund to boost our attack on The POIS Monster! Explained here:
http://poiscenter.com/forums/index.php?topic=125.0

We raised $2,150 in just the first 2 weeks, with much more pledged!

And your POIS fund donation is most welcome here:
http://rarediseases.org/about/support/research-donations

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

Our 4-year-old POIS thread here at Naked Science Forum will also always remain open for newcomers, for general unstructured discussion, and historical research of the 10,000+ postings here since 2007.

[eur79m]

newbielink:http://www.drlwilson.com/ [nonactive]...

Please let me know what you think, or if you have seen this before.

Hi jive,

I would disregard any "info" you have found on "Dr" Wilsons page.

Have a look at his "Vaccination Horror Story" (bottom of main page). This has been scientifically refuted and his recommendations on vaccination are utter BS. If you do not trust my views on this I suggest you at least cross check everything "Dr" Wilson puts out there with more reliable (scientific) sources.

[eur79m]

Hi all,

some random questions from my side...

Looking at the NORD page they do have a database of rare diseases there:

newbielink:https://www.rarediseases.org/rare-disease-information/rare-diseases [nonactive]

POIS is however not to be found in it yet. Is this dependent on the research grant being raised or could it be included based on the current scientific basis (Prof Waldinger etc)? I think this could help raise the visibility and credibility of POIS and a good reference point when talking to a doc who has never heard of it.

In a similar vein, has POIS been accepted by some official institution to be an actual disease? When and by whom is something officially declared a disease? It does not have an ICD code as far as I saw on the WHO page. The reason I am asking is again regarding credibility when dealing with the medical system...


Different topic...
The points that have been raised concerning immune privileges of testicles / sperm, antisperm antibodies etc always make me wonder why issues arising from this area can't be dealt with by modern medicine. Today it is possible to transplant numerous organs from different persons with completely different genetic characteristics and the resulting immune reaction and rejection of foreign tissue can be controlled by medication. Is this completely unrelated to auto-immune reactions? Is there no way to "tame" our own immune systems / antibodies with drugs already successfully used in transplantation medicine?

Last question...
Do any of you / or do you remember reading from somebody experiencing actual testicle pain in connection to POIS?
In my case it is only my right testicle that starts hurting after an emission. It is then very sensitive everywhere and there is a burning sensation up the spermatic cord, sometimes radiating out further. Not STD related. As I elaborated in my first post I actually underwent surgery on my right testicle because the pain was thought to stem from a spermatocele, which was not the case. Following surgery the pain cant be exactly localized any more, it just feels like my whole right testicle + spermatic cord burning...

Thats it for now, looking forward to your feedback!

[demografx]

Research Fund Total: $2,250.00
Please read about it at: http://poiscenter.com/forums/index.php?PHPSESSID=97a0a767229bfcd7b6822ec05c6c0160&topic=125.0
Then help yourself by donating here: http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3


Thank you very much, everyone!!

[demografx]

I just made a donation to NORD. Keep up the good work everyone!

Hoping, thank you !!

[silverandcol]

I'm sure most people can attribute faster pois healing with increased sperm regrowth.  It makes sense that when you feel good again, your body has a full supply of semen.  So I was wondering, shouldn't DHA help with that.  I know DHA has been talked about but I wonder why its not too successful.  I think I will try a diet with mackeral, salmon and nuts though instead of taking supplements which might not be too effective.

Also I found that further, changing to a more natural diet, or consumption of supplements to compensate for a dietary imbalance, has been associated with reduced violent behavior[1] and increase attention span, but the mechanisms for the effect are still unclear.

That would explain why I might be sudden prone to more irritated outbursts and add like behavior in pois.  The body might be in a lack of certain nutrients in trying to compensate for lost semen.  This might also explain why ejaculating again during pois makes it so much more worse.  You are further increasing the imbalanced.

Also if you have a dry ejaculation, the pois symptoms are less severe, it all kinda makes sense =D.

[jivetalk]

-> Demo - Thanks for the Welcome back. I'm always around. Usually just lurking and learning.

-> eur79m : Thanks for the Heads up on Dr Wilson. Yeah, after reading his stuff on Vaccinations and Coffee Enemas..Starting to sound a bit dubious.

Also re: Pain in the testicles. I get that as well! usually after the day after emission and usually whilst in POIS....geez wonder if it's all linked..

[demografx]

Looking at the NORD page they do have a database of rare diseases there:

http://www.rarediseases.org/rare-disease-information/rare-diseases

POIS is however not to be found in it yet. Is this dependent on the research grant being raised or could it be included based on the current scientific basis (Prof Waldinger etc)? I think this could help raise the visibility and credibility of POIS and a good reference point when talking to a doc who has never heard of it.

It was scheduled to go in today! I'll check for status, thanks for reminding me.

edit: my mistake, it will go in NEXT Monday, June 27, 2011!

[spence23]

hey everybody, as i posted before the last 3 years or so it seemed that my POIS got severely worse having 0 uptime at all.  After many visits to many different doctors i'm at a loss and am desperately looking for new ideas.

The main symptoms i'm experiancing are a complete lack of motivation and energy to the point where i stopped working and dropped any and all of my hobbies.  I've been attempting to do some digging and it seems that those 3 fit fairly well with low testosterone which i know some people here have had issues with as well but my blood tests have all come back normal so my doctor disregarded my concern.

over the past 3 years i've attempted about 6 different types of anti-depressants as well as many different types of therapy and seen many psychologists but nothing has helped even in the slightest.  I've been given a clean mental bill of health multiple times and am concerned its a physical/hormone issue but my family doctor has pretty much given up at this point

about 3 times in the last 3 years i've had complete relief from these new symptoms but its only been for 24 hours and i can never find a connection, any suggestions would be be greatly appreciated, thanks.

[demografx]

Hi spence,

Welcome back!

I hope you get some answers from posters here. Also try
our new forum at
http://www.POISCenter.com/forums/index.php

As you know, testosterone has helped a few people here (alleviated my POIS 80% now for the last 3 years). I would strongly suggest getting bloodtested hormonally with an endocrinologist.

Best wishes,
demo

[spence23]

Hi again demo, i've been blood tested in the past by my family doctor for testosterone levels which he claimed turned out normal, i'm trying to get a referral to an endocrinologist but my family doctor is very hesitant to do so without a legitimate cause on paper from these tests.

would an endocrinologist be able to do any more extensive testing that my family GP wouldn't?  and is it possible to get multiple false positives on a type of hormone or even have correct levels in the blood but another issue involving the pituitary or something similar?

[demografx]

Spence, my GP and urologist were incomplete with their hormonal testing. And with testosterone you need a number of different tests to be complete.

I would insist on an endocrinologist. Get angry. That's what I did. Most physicians are clueless.

[demografx]

 
 
Let's Start Finding A Cure for POIS - - NOW!

(This letter will go out to 400+ PM's and emails - - to everyone who registered or surveyed with us at both forums. Since 2007!)


Dear Friends and Fellow POIS Sufferers,



On February 18, 2007 the first post about our struggle with POIS appeared on The Naked Science Forum, an online science discussion forum that includes science, medicine and technology news.  It was John21 (now a Senior Member) who took that first brave leap into the online world of POIS.  Others describing their unusual and very disturbing symptoms of POIS (a term described by a Dutch researcher in 2002), immediately followed.  And so, the first POIS forum was born. 

 

Since that first post, 580 pages of posts detailing the POIS experience have been filled.  We have documented our symptoms, our interactions with the medical profession (often very demoralizing and disappointing), medications and/or supplements that either made us feel better, albeit temporarily, or made us feel worse.  So besides supporting each other while in the throes of a very isolating disorder, we collected specific and intricate data, often of a very personal nature, hoping that one day we’ll help find a cure for this dreadful condition.

 

Some of us went as far as to make lab rats of ourselves, trying concoctions and physician-prescribed medications that did us no good.

 

And we’ve also relied upon humor!  Yes -- humor helps invaluably when things seemed so desperate.

 

As time passed, we realized the need for a forum of our very own, where ideas could be documented by subject, and where the forum was ours and ours alone.  Daveman, another Senior Member, painstakingly designed this new forum, www.POISCenter.com .  While it is still a work in progress, it is the one and only online forum specifically dedicated to supporting others with POIS.

 

As most of you know, there is precious little research on POIS.

 

We, as a group, are going to change that!!
 

We have affiliated ourselves with the National Organization for Rare Disorders (NORD), www.rarediseases.org , a non-profit organization that is working very closely with us to find the world's best medical/scientific minds help us find the cause, treatments, and a  cure for POIS. And by "best" I mean not only brilliant academic researchers with sterling academic credentials, but who also possess two critical ingredients: Passion and Compassion. On Tuesday, June 28, 2011, you can view our group’s link on the NORD site at http://rarediseases.org/rare-disease-information/rare-diseases/viewIndex?tab=P&query_start=51

 

The starting point is for us to fund a POIS Research Grant, with NORD's help. Please read this very brief summary of the research program and our growing determination to do what it takes to fund our first research grant -- http://poiscenter.com/forums/index.php?topic=125.0

 

In only two weeks we have already collected $2,250.00.  But we need a total of  $33,500.  This is where you come in.

 

The rest of the science world will eventually take POIS dead-seriously, but it's up to US to first put the wheels in motion and show them solid, concrete, medical, peer-reviewed evidence of our disorder.

 

That is the intent of the Research Grant program, and of the funding of our first POIS grant.

 

So, PLEASE...donate what you can to our research grant fund!

 

Please donate here:

http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3

 

Personally I can say that the past 35-plus years of my life have been filled with the agony of POIS. But YOU have made it all meaningful for me by making me a "POIS friend" and allowing me to help you in my modest efforts to our cause.

 

And--if I hadn't listened to YOUR advice on our precious forums, I would most certainly not have experienced a miraculous 80% POIS-relief for my specific symptoms! As Moderator, I received so much in return from the forum members!  []

 

Please jump on the bandwagon with us, and donate whatever you are able to.  No donation is too small!

 

Together we are going to cure POIS!!!

 

Best wishes and best regards, everyone!

Yours,

demo