[Guthrie]

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.

[Defsync]

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.

[demografx]

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  ). 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.

[Defsync]

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.

[Defsync]

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.

[demografx]

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.

[demografx]

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.

[Counterpoints]

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

[underwater]

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.

[martin88]

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 ...

[martin88]

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

[CertainlyPOIS]

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.

[CertainlyPOIS]

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.

[Counterpoints]

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.

[Limejuice]

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.

 

[Counterpoints]

Limejuice,
It would feel weird to say "sorry you don't have high cortisol".
I'm very glad that PS is still helping you.  And thanks for the update.

[Ambient123]

Hey guys.

Just to say that tonight im going to begin my Tyrosine experiment. Im going to "O" tonight, and in the morning i am going to take two capsules of Tyrosine and see how it affects me. I will also update you with symptoms over the next few days and whether or not they are improving with the Tyrosine supplementation.

At the moment, my POIS occurs thus:

Day 0 (day of release): Fine
Day 1: Light POIS symptoms, but still basically fine.
Day 2: This is when POIS really begins to kick in, symptoms peak on day 2
Day 3: Symptoms remain.
Day 4: Symptoms begin to alleviate.
Day 5: Symptoms are further improved
Day 6: ....

And so on.

Will keep you all posted

[Counterpoints]

Any link or way to view the results of the survey?

Defsync,
Once you complete the survey, you are given a link to all the responses.

It is possible that we could make this link totally public, but it's not something I would feel comfortable "just doing". (Actually, I'd rather it not be my decision!... And I now declare it not my decision. [] )  We'd have to see how people feel about that.

The main reason I wanted the link given after not before completion, is because I didn't want the completed responses to bias subsequent responses.  (e.g. I didn't want to see artificial convergence).

There is no pretense of keeping the responses super-private, and there never has been.  (In fact, the form explicitly states that responses are to be used for research). 

Feedback welcome.

[demografx]

 CP, I decided to take my bloodtests nonsymptomatic and strangely enough, it's working out very well. I simply wanted to get moving after 2 years' deliberating uselessly
: - )

[Guthrie]

By the way, if there is a "web site" (which would be more a list of links without content), why not use it?

...

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. 

I really like martin88's idea of a website that would be a "list of links without content," which would simply help for easier top-level navigation of our data, while this forum thread would continue to serve as the location for the continued discussion and new content. 

We could even combine this with demografx's method of searching the thread using google--i.e. we could have a section on the website called "Attempted Treatments," and then we could list relora, levitra, etc., and for each of them, you could click on a link (which employs using the google-method) that takes you to the places that that treatment is mentioned in our thread.  So, you click on 'relora' on the webpage, and it pulls up all the posts that mention relora. 

It seems like this would be pretty easy to do, and it wouldn't have to affect the way we currently do things in the thread--it would just add an extra level of accessability.