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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6425572 times)

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15900 on: 28/03/2012 15:10:10 »
CCconfucius and mellivora,

We know the incredible effort -- HOURS!! -- that you both spent putting the reddit post together.
http://www.reddit.com/r/IAmA/comments/rge55/i_am_a_guy_with_a_rare_sexual_illness_its_so/

You two have selflessly accomplished this mentally grueling task -- and under a major deadline -- with the sole aim of raising funds for the first-ever POIS research grant.

Regardless of what comes from this in fund donations, you two have gone above and beyond the call of duty!!!

POIS IS NOW ON THE PUBLIC'S RADAR, BECAUSE OF YOU!!!!  POIS IS NO LONGER A DISORDER THAT NO ONE HAS EVER HEARD OF!

Your dedication and fantastic teamwork is/will be more meaningful than any of us can even possibly know at this time.

Gracias! Merci!  Danke Schön! Спасибо! Grazie! Dank u! Hvala! Go raibh maith agat!  Aitäh! Mulţumesc! Dankie! Děkuji!
 
In other words, Thank You -- from all of your international POIS forum members.


Demografx and Daveman

« Last Edit: 29/03/2012 11:49:09 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15901 on: 28/03/2012 20:54:30 »

Thanks, the [reddit] response and and lots people actually understanding was enough for me.


I agree, a good part is pleasant to read and the awareness is increased. There was even new POIS cases who now know what they have.Thanks again.


I agree with Martin.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15902 on: 28/03/2012 21:30:45 »

What I don't understand is why everybody isn't robbing their neighborhood bank in desperation to fund NORD and get rid of POIS ???!!!????


Ditto!! Demo!!

Again, just think of the better life and potential for even more income if we can beat this thing!

More friends, money, security, and just down right feeling better.

Isn't it worth a little sacrifice now to have a better future?

Please commit to give to OUR research fund!
DO IT NOW!
DON'T PROCRASTINATE!

PLEASE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15903 on: 28/03/2012 22:21:21 »
Thanks, the response and and lots people actually understanding was enough for me.
I agree, a good part is pleasant to read and the awareness is increased. There was even new POIS cases who now know what they have.Thanks again.

The whole reddit posting experience has been overwhelmingly positive. We usually only talk about POIS amongst ourselves. Discussing it with non-pois sufferers, hearing their views and just getting POIS out there in the public mind a bit more has been great. As you say we seem to have reached some new POIS sufferers - worth it just for that.  I've also got a lot of PM's from people. One or two are from people with other rare diseases identifying with our situation. We are not the only people in a struggle that's for sure.

I'd like to say a huge thanks to NIGHTINGALE who first suggested posting on reddit. Without him none of this would have happened. This is a forum full of sparks. You just have to catch one and start fanning the flames and who knows what obstacles it'll burn down. If you get inspired by something someone posts on here. SHOUT about it and pursue it. I bet it'll be rewarding for you and it could be hugely beneficial for all of us and future POIS sufferers.

Public thanks to CC who has been great to work with on reddit. Nordnurse gave up a lot of time on this too and made a really important contribution to honing the wording of our post. And thanks to other POIS people who posted comments on reddit to spread the word and inform.

Animus - you're amazing. Your story attracted a lot of attention on reddit. Without life stories like yours and your demonstration of incredible resolve and determination, the reddit post wouldn't have been possible.

Incidentally, although we are no longer a "hot" post on reddit in terms of activity, we are still the "top scoring" post in terms of upvotes and comments. What an amazing community reddit is...

http://www.reddit.com/r/IAmA/comments/rge55/i_am_a_guy_with_a_rare_sexual_illness_its_so/
 

Offline JackSparrow

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15904 on: 28/03/2012 23:07:47 »
Hello everyone,
  I spotted the post on reddit and my jaw dropped.  I've been unable to function normaly for many years and over time my understanding of what I have has evolved.  What I always found hard was to describe how I feel.  The way I finally described to my doctor last week instead of explaining the aches and pains I just said I basically feel like I have the flu and I'm 100% convinced it's related to ejaculation.   He was not ready to make the link because he's not aware of any such case.  I quickly browsed some posts here and I'm not sure if all my symptoms match.
Here are my symptoms
-After ejacualation I tend to get dry itchy skin on the inside of my forearms within minutes.  The more ejaculations over the course of a week I get the worst it will get until it's like dermatitis.
-Some times I'll also get itchy eyes.
-I'll crash for 4-5 days.  Day 2 and 3 being the hardest.
-My back feels inflamed and sore and dead tired.
-I get some joint pain in the back/shoulders.
-When I've crashed I dread going to sleep cause sleep is difficult as I'm restless and cant find a relaxing position. 
-I wake up feeling worst. 
-Everything feels like a chore.  I basically dont want to do anything.
-This all started after I got a mono 8 years ago or so.

What do you guys think?

I'm seeing my doctor again in a few weeks and I will definitely bring some documentation on POIS.
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15905 on: 28/03/2012 23:45:08 »
Welcome Jack Sparrow,
I'm glad you found us. Your symptoms definitely sound like POIS to me. Do you have cognitive difficulties (what we call here "brain fog" - ie. difficulty concentrating/thinking clearly as well as the tiredness). you said you feel like you have the flu and its linked to ejaculation. Well...that's us!
I don't think the dry itchy skin is a common symptom but I think there are one or two people here with similar - maybe they can post.
Exact symptoms vary from person to person but tiredness/brain fog applies to just about all of us I think to an extent. Some people don't get joint/muscle pain, others do. It seems to be the case that there could be more than one category of what we call POIS.

Pretty soon I think you'll get a welcome from our moderator Demografx. That'll contain a whole load of links and info that'll give you plenty of rocket fuel to tackle your doctor with..I found that taking some printouts of the few medical papers that have been written on pois to my doc helped convince him of its reality.
« Last Edit: 28/03/2012 23:47:14 by mellivora »
 

Offline JackSparrow

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15906 on: 29/03/2012 00:04:33 »
Yes. I get the fog.  I also feel my memory is really bad now.  I also tend to not want to talk much when I'm crashed.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15907 on: 29/03/2012 00:55:46 »



JackSparrow, welcome to the POIS thread of The Naked Science Forum!  We believe that 2012 is POIS' Breakthrough Year! We hope to launch serious POIS Medical Research! A great time to be here!




**(If you have any technical questions, please feel free to PM (private message) Daveman or me -- go towards the end of this welcome message (after the 5 available research articles are described) for instuctions on how to send PM. We'll be happy to explain!)***


If you haven't already done so, but would like to like to join the new forum,  send "daveman" a PM here at the Naked Science Forum -- "daveman".  He'll reply to you.


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

Our new POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
Just click HERE first, and then look for "CHAT" button towards top of page, 6th button to your right!


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 YouTube file for the POIS  TV documentary, "Desperate Measures":

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:


Post Orgasmic Illness Syndrome "POIS": Case report

Authors:
Abdalla M Attia*, Magda H Al-Ziny, Hossam A Yasien
*Corresponding author: Andrology Unit, Minoufiya University, Shibin El Kom, Eygpt

For more info, check out emi_b's  SMF POIS thread:
http://poiscenter.com/forums/index.php?topic=191.0;topicseen


Available Upon Request:

1. and 2. POIS Research Studies, 2011

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

3. 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.

   
4. 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


5. 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.


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'! "

It can be very  helpful to you when dealing with medical professionals to point out the
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!

POIS also appears in credible medical 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 our pages have been read nearly 2,000,000 times! 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#.


 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15908 on: 29/03/2012 01:15:31 »
Yes. I get the fog.  I also feel my memory is really bad now.  I also tend to not want to talk much when I'm crashed.
that back feeling inflammed you get, is it a burning like sensation. If it is i get that, i feel all mine on my lower back.
the back feeling dead tired: in the morning when i wake up i feel all my tiredness is concentrated in my lower back. And when i play sports i get same feeling 1 day into pois.
I also have mono(EBV) infection but 95% of american adults have it to.

you should go to poiscenter.com and check how the treatment list by me and vincentmarcus
 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15909 on: 29/03/2012 05:23:16 »
Great to here about the reddit posts and everything.

I'm not totally convinced about a reaction to semen.  But if I do remember a while back, day 1 of POIS, I remember a terrible burning sensation in my groin that lasted about the whole day.  This was only once.  Orgasm is so complex and I'm not so sure if claritin is working for me because it is easing my reaction with sperm or with one of the many different hormones that are released post-orgasm.  I would just like to really know what hormone/hormones or if sperm is responsible for this malady.

After taking claritin my POIS has gone from extremely debilitating to just really really annoying.  I can definitely feel the reaction, it is still there, yet I feel it at a less intense rate. 

I'm thinking that another reason my POIS might have to do with a hormone released by my body is the certain pattern my POIS takes.  Starting in the back of my head going towards the front.  As it migrates towards the front of my head and the feeling slowly leaves, I seem to break out in pimples.  Possible hormone reaction?
« Last Edit: 29/03/2012 05:34:47 by GoingCrazy »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15910 on: 29/03/2012 12:32:13 »
Mel (mellivora), your very sensitive, upbeat reply to each and every comment at reddit is ASTOUNDING!

http://www.reddit.com/r/IAmA/comments/rge55/i_am_a_guy_with_a_rare_sexual_illness_its_so/
You guys walk on water in my book!

Mel, CCconfucius, Nightingale, nordnurse, daveman, thank you! Thank you! Thank you!
« Last Edit: 30/03/2012 00:50:03 by demografx »
 

Offline Omen 30

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15911 on: 29/03/2012 13:57:29 »
Last week I had a testosterone test when I was in abstinence from sex for almost a month,and the result was 347...again day before yesterday I got a testosterone test done on the 2nd day of pois,and the result is 658...I don't understand how come such a big fluctuation.but one thing is sure that my body is producing enough testosterone.I am so happy.
 

Offline carlitto

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15912 on: 29/03/2012 15:55:50 »
Hello everyone,
  I spotted the post on reddit and my jaw dropped.  I've been unable to function normaly for many years and over time my understanding of what I have has evolved.  What I always found hard was to describe how I feel.  The way I finally described to my doctor last week instead of explaining the aches and pains I just said I basically feel like I have the flu and I'm 100% convinced it's related to ejaculation.   He was not ready to make the link because he's not aware of any such case.  I quickly browsed some posts here and I'm not sure if all my symptoms match.
Here are my symptoms
-After ejacualation I tend to get dry itchy skin on the inside of my forearms within minutes.  The more ejaculations over the course of a week I get the worst it will get until it's like dermatitis.
-Some times I'll also get itchy eyes.
-I'll crash for 4-5 days.  Day 2 and 3 being the hardest.
-My back feels inflamed and sore and dead tired.
-I get some joint pain in the back/shoulders.
-When I've crashed I dread going to sleep cause sleep is difficult as I'm restless and cant find a relaxing position. 
-I wake up feeling worst. 
-Everything feels like a chore.  I basically dont want to do anything.
-This all started after I got a mono 8 years ago or so.

What do you guys think?

I'm seeing my doctor again in a few weeks and I will definitely bring some documentation on POIS.

Funny you mention that POIS started after a mono infection (a.k.a EBV or "the kissing disease") because I have the impression that my misery also started sometime after getting EBV. In most cases ppl do not even get fever but in my case I had fever for months and had to lay in hospital for a couple of weeks. before that incident I can hardly remember having any POIS. Any comments out there?
 

Offline Omen 30

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15913 on: 29/03/2012 17:08:16 »
Today is my day 1 again....day before yesterday I had an O and today again I had one...the first 2 days are always very irritating and lethargiC.I read the pois article on wikipedia.nice to see that.
« Last Edit: 29/03/2012 17:45:59 by Omen 30 »
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15914 on: 29/03/2012 19:04:36 »
Last week I had a testosterone test when I was in abstinence from sex for almost a month,and the result was 347...again day before yesterday I got a testosterone test done on the 2nd day of pois,and the result is 658...I don't understand how come such a big fluctuation.but one thing is sure that my body is producing enough testosterone.I am so happy.

Hi Omen,
Did you have the tests done at the same time of day? Testosterone normally has a daily cycle as I understand it. It peaks in the morning. I had a test later in the day once and mine was low. When I had it at 11am as the doctor recommended, it was in the upper end of the "normal" range. I still wonder a bit if mine gets to low sometimes. If your tests were done at different times of day, that might explain the difference in your results.
« Last Edit: 29/03/2012 19:06:09 by mellivora »
 

Offline Omen 30

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15915 on: 29/03/2012 19:15:11 »
Hi mellivora,
I took care about the time for the tests..both the tests were done in the morning around the same time the first thing I did after I woke up...
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15916 on: 29/03/2012 19:39:17 »
I recently lowered my testosterone dosage by 1/3 and I'm still nearly POIS-free!

My hunch (just a "feeling") is that my body "adjusted" to "POIS control" somehow during my first 2 years of TRT treatment for POIS. That was at a high dose of 15mg/daily (now 10mg/day) of Androderm T-patches (Watson Pharma).

It is possible that I lost sperm count from TRT. I will never know. I should have done Semen Analysis before and after. Future experimenters should do that.

And if you are younger, this treatment means that possibly your own body's natural ability to produce testosterone might shut down if you decide to quit TRT.

Explore important fertility considerations.

If you're interested in exploring/discussing testosterone treatment for your POIS, please find a good endocrinologist.
« Last Edit: 30/03/2012 00:46:25 by demografx »
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15917 on: 30/03/2012 02:54:11 »
"Someone suggested removal of the prostate and seminal glands, wouldn't that combined with a vasectomy completely remove any ejaculate during orgasm while still allowing for orgasm? Seems less extreme than castration.
However, with the guy who did go the castration route, if he didn't not remove the prostate and was still sexually active with hormone replacement therapy, that suggests it's not a protein made in the prostate that causes this, but rather the testicles. So why don't vasectomies work?"

I got this question from someone, i think it is a good question but i dont have an answer, can someone answer it. daveman your alley
 

Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15918 on: 30/03/2012 03:03:52 »
CCconfucious, here is a quote directly from Animus that answers the question:

"I speculate that sperm is one of the contributing culprits- based on the observation that my POIS improved by a factor of 20% after I eliminated sperm production.
My POIS went away 100% after I eliminated all Semen production.
It has been over 2 years since the surgery, and holding steady. I can have an O, and completely forget about it the next day.

I think it would work on other people.
However, I don't know if it would be possible to retain the testicles, and remove the other organs, and get the same results."
http://poiscenter.com/forums/index.php?topic=94.msg822#msg822
« Last Edit: 30/03/2012 03:09:07 by Vincent Marcus »
 

Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15919 on: 30/03/2012 07:35:54 »
Great job at reddit, guys. I made a username there and started
replying to comments, but it appears I can only make 1 reply
every like 10 minutes.
« Last Edit: 30/03/2012 10:34:42 by Vincent Marcus »
 

Offline B_Daniel

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15920 on: 30/03/2012 08:07:40 »
The whole Reddit thing was simply amazing (big thanks ccconfucius, mel, nordnurse, and whomever else!).  Besides the money raised and the awareness created, just reading through some of the posts has been so interesting to get perspective from outsiders.  Some of their ideas are worth following up on.
 

Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15921 on: 30/03/2012 08:58:30 »
The whole Reddit thing was simply amazing (big thanks ccconfucius, mel, nordnurse, and whomever else!).  Besides the money raised and the awareness created, just reading through some of the posts has been so interesting to get perspective from outsiders.  Some of their ideas are worth following up on.
Great seeing the reddit post. Well done to everybody involved.
 

Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15922 on: 30/03/2012 11:00:16 »
Concerning our post on reddit I think we should add links to the case studies on POIS and also say how reddit readers can find the scientific studies on POIS.
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15923 on: 30/03/2012 11:51:12 »
The whole reddit posting experience has been overwhelmingly positive.
Thanks to you and the team!
The Reddit community is really dedicated to help others, we never had such a response while trying to spread the word in other forums over the net, I was pleasantly surprised. It can also be the text (or the choice of section)  because months ago some people already posted about POIS in Reddit and there wasn't a lot of comments.
http://www.reddit.com/search?q=post+orgasmic
 
« Last Edit: 30/03/2012 12:20:11 by martin88 »
 

Offline Habibou

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15924 on: 30/03/2012 11:54:36 »
Great job for the Reddit !!! Would it be possible to post a link of Animus video to make it even more real? just a suggestion of course... :)
 

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Re: Post Orgasmic Illness Syndrome (POIS)
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