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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6454191 times)

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3750 on: 08/03/2009 04:43:39 »

Will PM some people on here to see if [independent POIS site] is a possibility.


Thanks for the PM Aaron, excellent idea! I think Martin (?) has been saving previous post data so hopefully you two will be in touch. And please maintain contact with B_Jim and Counterpoints as they have created important databases.
« Last Edit: 08/03/2009 05:07:16 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3751 on: 08/03/2009 04:45:57 »

I've created an account on wikipedia and am working on getting it "autoconfirmed" so I can edit locked pages like "orgasm" to include reference to POIS.

I've also created a wikipedia entry for POIS here:

http://en.wikipedia.org/wiki/Post_Orgasmic_Illness_Syndrome

I copied almost verbatim the script from the Youtube video to start off with. It would be a great help for everyone who has done work on this to help contribute and really flush out the page with as much information and references as we can, such as creating ref links to ALL the articles that any of you may think are related to POIS or could have any information helpful to the cause. Better than a portfolio, a link to a complete wikipedia entry could be emailed around the globe with ease. I have a backup maintained at home of the page, and will make continual backups as people edit it.


Excellent, Defsync! Thank you!

Since I need to get more familiar with the entrails of wiki, can you please ensure that we get the following sources mentioned:

Waldinger's study: send me or "Pyropeach" a PM with your regular email and we'll send you the PDF.

NY Times article: http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=2&scp=1&sq=friedman%20sexual%20January%2020&st=cse

www.reuniting.info    Marnia is a forum member here, and her site (co-published together with her husband) has excellent postorgasmic and general sexual/orgasmic info.
« Last Edit: 08/03/2009 05:06:17 by demografx »
 

Offline Defsync

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3752 on: 08/03/2009 05:08:50 »
Hey guys,

I'm glad I found you. 32 years old. Been suffering with something like this for a couple of years now. I initially thought that this was triggered by a urinary tract infection that got up into my kidneys because I always have some pain/inflammation in my lower back during these episodes and it's most similar to what I felt when I had that infection.  however, I've been to doctors and kidney function is normal.

The only thing that works for me is sex without ejaculation. This is still troublesome because sometimes after sex, I'll be so aroused that I'll have a wet dream and ruin it.

Anyway, even though I've found this forum and it feels better to know that there are other people out there who are experiencing this, it seems kind of ridiculous to be posting at the end of a single forum thread with 10,000 posts.

I'm a web designer/programmer by trade and have built large scale community oriented sites. Is anyone interested in helping me to organize the information that's been presented so we can create a site? Maybe we can get something like POIS.org. It would be much better to have a threaded forum where people can interact on multiple topic threads/froums (ie. experiences, treatments, research,etc.)

I'm thinking something like this:
http://www.celiac.com/

Anyway, will PM some people on here to see if it's a possibility.

That's what I'm talking about~! I've just found this site, aaronchi, like 2 days ago, so I'm still soaking up all the info. If you want to get people to fund research on POIS, imho, it needs a well thought out website to build up POIS community. I like the idea of different threads where people can interact on multiple topics.

-a section for profiles, listing a person's physiological stats, POIS symptoms, general locale (state or province), and a contact email so researchers can contact them for individual questions or requests for study
-another section for all the remedies that have been tried, with links to their wikipedia counterparts
-a thread topic for all the places that have been contacted and/or responded with interest in conducting studies or doing similar research
« Last Edit: 08/03/2009 05:24:41 by Defsync »
 

Offline Defsync

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3753 on: 08/03/2009 05:31:31 »
Quote
Excellent, Defsync! Thank you!

Since I need to get more familiar with the entrails of wiki, can you please ensure that we get the following sources mentioned:

Waldinger's study: send me or "Pyropeach" a PM with your regular email and we'll send you the PDF.

NY Times article: http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=2&scp=1&sq=friedman%20sexual%20January%2020&st=cse

www.reuniting.info    Marnia is a forum member here, and her site (co-published together with her husband) has excellent postorgasmic and general sexual/orgasmic info.

Is there a site that publicly hosts Waldinger's study? If not, we'd need permission to host it on Wikipedia.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3754 on: 08/03/2009 05:34:18 »

If you want to get people to fund research on POIS, imho, it needs a well thought out website to build up POIS community.


Major university was interested - expressed no problems with the thread. POIS numbers however are tiny.


I like the idea of different threads where people can interact on multiple topics.


What if we did that here?


-a section for profiles, listing a person's physiological stats, POIS symptoms, general locale (state or province), and a contact email so researchers can contact them for individual questions or requests for study


Counterpoints' survey database is at
http://pois.olympe-network.com/


-another section for all the remedies that have been tried


B_Jim has put that together on P. 11.
« Last Edit: 08/03/2009 05:37:41 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3755 on: 08/03/2009 05:39:24 »

Is there a site that publicly hosts Waldinger's study? If not, we'd need permission to host it on Wikipedia.


I'm in touch with him. I can ask him when we need to.
 

Offline Defsync

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3756 on: 08/03/2009 05:58:51 »

Is there a site that publicly hosts Waldinger's study? If not, we'd need permission to host it on Wikipedia.


I'm in touch with him. I can ask him when we need to.

Well I'd ask him as soon as possible, someone has already slapped the Wiki entry with a "deletion tag". I need permission to host that article ASAP or a link to somewhere it's posted (maybe it could be hosted on this site? that way it could not be removed)
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3757 on: 08/03/2009 06:23:39 »

Is there a site that publicly hosts Waldinger's study? If not, we'd need permission to host it on Wikipedia.


I'm in touch with him. I can ask him when we need to.

Well I'd ask him as soon as possible, someone has already slapped the Wiki entry with a "deletion tag". I need permission to host that article ASAP or a link to somewhere it's posted (maybe it could be hosted on this site? that way it could not be removed)

Journal of Sex and Marital Therapy 2002 copyright -Postorgasmic Illness Syndrome: Two Cases by Dr Marcel Waldinger and Dr Dave Schweitzer - allows individual use, which is what we do here. "Posting to a listerv" requires written permission. Here's the contact info:
http://search.tandf.co.uk/contact_journals.asp

You should also ask Girlwind's permission via PM here (person2207 at YouTube) to use her script from the YouTube video.
 

Offline Defsync

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3758 on: 08/03/2009 06:30:47 »
Quote
Counterpoints' survey database is at
http://pois.olympe-network.com/

Is there a site that publicly hosts Waldinger's study? If not, we'd need permission to host it on Wikipedia.


I'm in touch with him. I can ask him when we need to.

Well I'd ask him as soon as possible, someone has already slapped the Wiki entry with a "deletion tag". I need permission to host that article ASAP or a link to somewhere it's posted (maybe it could be hosted on this site? that way it could not be removed)

Journal of Sex and Marital Therapy 2002 copyright -Postorgasmic Illness Syndrome: Two Cases by Dr Marcel Waldinger and Dr Dave Schweitzer - allows individual use, which is what we do here. "Posting to a listerv" requires written permission. Here's the contact info:
http://search.tandf.co.uk/contact_journals.asp

You should also ask Girlwind's permission via PM here (person2207 at YouTube) to use her script from the YouTube video.

I already have it. =)

Quote
Counterpoints' survey database is at
http://pois.olympe-network.com/

Any link or way to view the results of the survey?
« Last Edit: 08/03/2009 06:36:00 by Defsync »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3759 on: 08/03/2009 06:43:36 »
Defsync, I just tried to get you a faster permission route for the specific article, but "request permission" is a dead link. Here's the origin page with the study summary:
http://www.informaworld.com/smpp/content~db=all~content=a713847004?words=waldinger*
 

Offline Guthrie

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3760 on: 08/03/2009 06:50:34 »
Is there a site that publicly hosts Waldinger's study? If not, we'd need permission to host it on Wikipedia.

Hi Defsync--perhaps you don't need a link to the full article; I think it is acceptable according to wikipedia standards to just list the publication information, even if the article itself is not publicly accessible.
 

Offline Defsync

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3761 on: 08/03/2009 06:58:13 »
I used your link to email the publisher. Hopefully they get back to me quickly. I've also started a "talk page" related to the POIS Wikipedia entry, supposedly this is used to help convince wiki admins not to delete pages.

http://en.wikipedia.org/wiki/Talk:Post_Orgasmic_Illness_Syndrome


It might be I just don't have enough experience with WIkipedia yet to properly format and list references and citations. Hopefully I can figure this out soon.

« Last Edit: 08/03/2009 07:11:49 by Defsync »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3762 on: 08/03/2009 07:43:11 »

I'm not favorable to wikipedia Pois article except if you make a very short article with Dr Waldinger's publication ( abstarct only) . I do not want to lose our little credibility because a lot of wiki users will read it and say "POIS doen't exist, POIS is psychologic..." . We have support of the best expert of ejaculation in the World : we are lucky for this so be careful ! I don't want to be confused with dr Lin and his "magic potions". We have a very little room between scientists  and charlatans. Be carreful.                            


Wikipedia is not a place for posibble theories but for the TRUTH. We don't have the trut for Pois and so it's too early to write an article on Wiki. The time will come. All Pois sufferers on internet using google with keywords " Fatigue, ejaculatio, orgasm, sex, flu-like, back pains " will find this forum. I contacted all Pois suferers i can on internet. At least 15 forums. Maybe we can make a better job. Why do you think i have write "post ejaculation tiredness"

I'm much more favorable to create a new website if you want.
Don't forget a lot of theories we have developed since 2006 are wrong (especially mine, sorry  :D ). But we need a lot a wrong theories before having a true one.
 Belief aboves Science.


Excellent caveats, B_Jim! It has been a long battle for credibility and none of us want to lose the little we have.
« Last Edit: 08/03/2009 07:46:42 by demografx »
 

Offline Defsync

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3763 on: 08/03/2009 09:03:03 »
Quote
Quote
It is proposed that this article be deleted because of the following concern:
=> it's not me. I just give my opinion, you are free to do what you want.

Naw it was because I hadn't cited any sources, which I've corrected by citing the Dr Waldinger article, links to New York times article, and a link to these forums. Don't know if that will be enough though, we'll see.

Long battle for credibility? I laugh at anyone that challenges my credibility on the existence of POIS. I'll turn em right around and tell them to go find me evidence that they know exactly what biochemical exchanges occur during orgasm. And if they do find one (i'm still looking) I'll laugh at them some more as I ask them "so with such a complicated biochem exchange happening, you don't think that any sort of imbalance in the exchange could occur, or that the brain or nervous system could react unfavorably?" Then I'll tell them "I guess you don't believe in  schizophrenics, autism, or any number of illnesses that at one time were unknown and believed to be false until the proper research was done." Maybe that's the u.s. marine in me talking and not giving a !@#$#! about anyone who challenges the existence of POIS.

Wikipedia is not definitive truth, it is the perception of what people believe is true. There are illnesses listed in wiki such as "fibromyalgia" and "chronic fatigue syndrome" that cannot be tested for directly, and POIS, I suspect, you will be able to test for once it's figured out what the main (majority) cause is. You've got a forum here, you've got many different people talking about their POIS, and there are MANY articles all over the web that talk about this in various forms, even if some of them only speculate. Personally, I think a wikipedia entry gives it a hair more credibility, even if people want to add a "controversy" paragraph to it, like you see for the "fibromyalgia" and "chronic fatigue syndrome" entries. Let them. Confront it. Add more references and links to more articles.

I don't know how I feel about removing it. I dont think "We have a very little room between scientists and charlatansis". There are thousands of new conditions being researched worldwide, hundreds that are discovered each day, and this is just another one. I like the idea of a website, but lets be frank, just like this forum it puts control of the topic under a few people. I think it's important to have a public article on it that is under nobody's control.
« Last Edit: 08/03/2009 09:18:28 by Defsync »
 

Offline Defsync

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3764 on: 08/03/2009 10:13:25 »
Aye, Girlwind has given me her approval.

ok, storytime.

Yeah so here I am, starting to have sexual relations in my late teens, and for some reason can't understand why my relationships are going to @#$#! once sex is introduced into the equation. Eventually I figured it out, that orgasm was the problem. My doctor at the time, that i had growing up, didnt believe me. Oh well. I said to myself let's see if I can combat this syndrome with top physical fitness, and hey, why not serve my country at the same time. So I joined the U.S. Marine Corps Infantry. Had a good run for a couple years. Met a nice girl, got married, starting having sex. Holy @!#$!# it's still there. STILL THERE, even though I was in top physical shape. After serving once, I didn't continue my career in the military. Can you imagine you go on patrol leading a squad of marines, only the night before having some nocturnal emission, and as a result yer mental fog gets others killed?

So two things I've taught myself since those times. Lucid dreaming, and using my external sphincter muscle of urethra to stop a full orgasm. Lucid dreaming is learning to take control of your dreams while you sleep. The sphincter muscle of urethra is the muscle that you contract to stop peeing, or relax to go pee. When you begin to reach climax, or the second the orgasm begins before ejaculation, you can contract this muscle very tightly to stop the ejaculation and also the rest of the orgasm itself. From my own sensing it feels about 1/3 an orgasm, and suffer about 1/3 the effects of POIS from it. To me 1/3 is still something I don't even want to deal with, but for others it might be more acceptable if they want to continue having sex.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3765 on: 08/03/2009 17:29:13 »
I used both techniques, but finally gave up. For me they were exhausting. Then again I probably wouldn't have made it through boot camp. Also the sphincter technique I learned prevented emission but not climax so it wasn't as effective. Lucid dreaming was exciting. New sensory worlds.
« Last Edit: 08/03/2009 17:34:40 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3766 on: 08/03/2009 17:53:45 »
Def, 7 references cited by Waldinger. Since it's PDF I can't copy and PM. Send me reg email and I can send to you. Might be useful for wiki to avoid deletion.
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3767 on: 08/03/2009 22:58:45 »
I think the wiki page is a good idea.  We have a LOT of information we will need to transfer over though.  It may take awhile, and more than one person will need to be involved.

As far as an independent site...  I don't think it will help much: the wiki page will fill whatever void is left by this thread, the video, and the questionnaire.

The thread is good in the sense that
1) It can be found easily in google searches
2) It makes it easy to join the discussion

 

Offline underwater

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3768 on: 09/03/2009 00:14:50 »
Aaron---
Interested in your comment re inflammation lower back. It's one of my main symptoms, along with other pelvic irritation. I can get this with arousal without orgasm. I think there is some neuromuscular tension associated with orgasm/arousal causing an inflammatory response. I think it may have origin in signals between genitals and lower spine, a loop that feeds back upon itself over and over. As far as the inflammatory thesis goes, it may be a culprit, just as histamine may be a culprit.
I recall in the early 90's going to a urologist about this. He did a thorough test of my muscles/tendons etc. in perineum area and said my burning sensation was a result of tight knots in tissue. He actually felt them. I have never tried to break these knots as it freaks me out to make a mistake and irritate this condition. This is a condition that I seldom discuss here. It goes generally by Chronic Pelvic Pain Syndrome (It often gets confused with prostatitis). This flares up for me with POIS. In fact, now that I think about it, this is one of the earliest symptoms of POIS for me.
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3769 on: 09/03/2009 00:17:12 »
About wiki I'm not sure it's a good idea like it is now. B_Jim made a good point with credibility I think. I need more time to have an arrested opinion but maybe I'll never have one final.
Can we really put links or text about our forum brainstorming in wikipedia ...
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3770 on: 09/03/2009 00:30:09 »
Any objections/suggestions about the following? :

As I said a long time ago (in post 186021) , I'd like to make a small online survey. I already started coding this since 2 months on and off, I didn't talk about it yet in the forum because I wanted to take my time to do it, it's not finished.
I don't really know if it will be useful but it's answering to my wish to have answers from more people when someone ask a question in the forum. Everybody can post his question in this poll and everybody can answer all questions only by checking a checkbox (multiple choice answers). Stats results are given for each question.
Maybe it looks complicated how I explain but it's very basic.
Definitely this won't replace Counterpoints's form which is fantastic and has other advantages for medical research but it can perhaps be useful to build some quick stats.

By the way, if there is a "web site" (which would be more a list of links without content), why not use it?
I added a menu like this :
- Home page (place for an introduction text)
Toward this forum at the nakedscientists:
Forum:
-First post (from John)
-Forum highlights (by B_Jim)
-Latest post
And toward:
-Research form (By Counterpoints)
- Video (By Girlwind)
- Articles (New york times, other to come)

I think a "web site" like this can be helpful to put together all the information for a MD or an eventual researcher. I don't think one of them would actually read our entire thread which is starting to be very big, sometimes out of subject, and sometimes going in a circle with repetitive ideas.
However I strongly wish to keep this forum we are using now, I don't need to have other new forum(s)/blogs on this new web site like it has been suggested.  The people who expressed to me PM the wish to participate are welcome, if this web site idea is accepted by everyone. A logo, a  banner on top, the introduction text have to be done . I'd like to keep this sober and without ads
« Last Edit: 09/03/2009 00:31:48 by martin88 »
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3771 on: 09/03/2009 00:58:18 »
Loving the new ideas, we need to leave as much trail as possible on the internet for future pois sufferers. I understand we dont to destroy little credibility but as long as sex is involve our credibility is already damaged and if we dont push and show that there is definatedly more than 200 people out there with pois or get a reasearcher ready to see what is going on, we are  never going to establish credibility. 
I also agree this must be done while trying to avoid being confused with "dr Lin and his "magic potions". I don't want to be confused with taoists or religious/philosophical/abstinent group." 

Also for the new guys i hope you understand the general consesus of the group at the moment to get a blood test on hormones and other chemicals to check for abnormalities.
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3772 on: 09/03/2009 01:01:59 »
Aaron---
Interested in your comment re inflammation lower back. It's one of my main symptoms, along with other pelvic irritation. I can get this with arousal without orgasm. I think there is some neuromuscular tension associated with orgasm/arousal causing an inflammatory response. I think it may have origin in signals between genitals and lower spine, a loop that feeds back upon itself over and over. As far as the inflammatory thesis goes, it may be a culprit, just as histamine may be a culprit.
I recall in the early 90's going to a urologist about this. He did a thorough test of my muscles/tendons etc. in perineum area and said my burning sensation was a result of tight knots in tissue. He actually felt them. I have never tried to break these knots as it freaks me out to make a mistake and irritate this condition. This is a condition that I seldom discuss here. It goes generally by Chronic Pelvic Pain Syndrome (It often gets confused with prostatitis). This flares up for me with POIS. In fact, now that I think about it, this is one of the earliest symptoms of POIS for me.

Aaron---
Interested in your comment re inflammation lower back. It's one of my main symptoms, along with other pelvic irritation. I can get this with arousal without orgasm. I think there is some neuromuscular tension associated with orgasm/arousal causing an inflammatory response. I think it may have origin in signals between genitals and lower spine, a loop that feeds back upon itself over and over. As far as the inflammatory thesis goes, it may be a culprit, just as histamine may be a culprit.
I recall in the early 90's going to a urologist about this. He did a thorough test of my muscles/tendons etc. in perineum area and said my burning sensation was a result of tight knots in tissue. He actually felt them. I have never tried to break these knots as it freaks me out to make a mistake and irritate this condition. This is a condition that I seldom discuss here. It goes generally by Chronic Pelvic Pain Syndrome (It often gets confused with prostatitis). This flares up for me with POIS. In fact, now that I think about it, this is one of the earliest symptoms of POIS for me.

Back when pois was worse for me i used to get burning sensation in my loower back and i also noticed i was able to tighten my muscle around that region. It lasted about a day or two right after pois.

Out of pois i tried tighntne my muscle an i couldnt.
What could cause an inflamattion of that region.
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3773 on: 09/03/2009 01:42:19 »
OK, I've thought about this more, and I'm going to revise my post. 

I agree with many of B_Jim's points.  However, I don't think an encyclopediac article needs to be about well-established facts -- in fact, many articles are not.  It just needs to contain useful reference information.  For instance, I'm sure there are long articles about astrology.  (And what we have to present has a lot more credibility in my opinion!).

I think it's fine, as long as we are truthful, and provide plausibly useful information.  BUT, the present article will need SIGNIFICANT additions and edits.  This won't be a one or two man job either.  It will take weeks, or more likely, months, to put together a high quality encyclopediac article.  Now, I think wikipedia is a great idea, and there won't be many arguments against it that wouldn't also apply to further publicizing our condition (and that's one of our main objectives, it seems!).  But perhaps it would be best to first start a site using "wiki" code (this is fairly common), put together a great article, and THEN post it on wikipedia, instead of starting on wikipedia, and getting in debates over deletion, and so on, before we have a good article.

We could still go the current route, but it will require a lot of pressure to make the article more presentable and complete, and potentially a lot of debate to keep the article from deletion, in the process.
« Last Edit: 09/03/2009 03:06:39 by Counterpoints »
 

Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3774 on: 09/03/2009 01:56:07 »
Cortisol Test Update:

I received results from the 24 hr urine cortisol test.  My cortisol levels are normal :(  My result was 30 and fell in the normal range of 3 - 45 (I don't know what the unit of measurement is).

This is extremely disappointing after building high expectations that cortisol was the colprit.  However, PS still works like a charm and I see no reason to stop taking it.

Just adding this to our library data.

 
 

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3774 on: 09/03/2009 01:56:07 »

 

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