[Finally]

I am not sure if I had posted these before?  It mentions how blood vessels become inflamed and constricted. Possibly why Levitra or natural equivalents may help?

http://www.actionlove.com/extra/headache.htm

also  dealing with Semen loss:

http.//wwwactionlove.com/extra/backpain.htm

[demografx]

[My POIS] is almost opposite of everyone's main symptoms.

Underwater, I think there are significant symptomatic differences amongst us all. What binds us together is that we all experience severe problems after orgasm, lasting for days and sometimes weeks. Hope I'm not being too simplistic.

[demografx]

I think the result of all this collective research is a "portfolio" of everything that's been learned, that we can submit to research clinics and medical universities around the country, on hopes that some clinic or some aspiring student would find interest in a study to learn more about POIS.

one place i would send such a "portfolio"
http://my.clevelandclinic.org/endocrinology/research/default.aspx

in my city we have one of the top medical universities in the nation. i would also send it there.

Defsync, per your suggestions above, can you assist us by sending a "porfolio" of this forum to your university/endocrinology contacts?

Why is all this information in a forum thread? Why doesn't POIS have its own website already? A place where we have all the information gathered and digital copies saved to the server, with links to where it all came from, with each person's experiences listed, something a bit more organized so if we are trying to get medical professionals to do research at the very least we can point them to the website.

Excellent questions you raised. It's just a question of resources. The Naked Scientists website provides us with a terrific infrastructure, staffed by technically web-savvy staff and a prestigious environment of Cambridge (UK) scholars and scientists. Our own resources started with John21 bravely talking to himself about POIS on his (and the thread's) very first post []. Then B_Jim created a summary of visitors here as well as other cases of POIS on the web. A video was created. Counterpoints and Martin put together an interactive questionnaire database. Counterpoints has also been actively involved in getting well-known researchers to possibly study us. And I have attempted to get exposure and/or assistance from a variety of sources, including Dr Marcel Waldinger (the first POIS-investigator) and grant funding from a major university medical center as well as assistance from a friend, a Harvard biophysicist who pioneered research into HIV/AIDS treatment. It can be a fulltime job sometimes.

Considering our limitations, I think it's amazing how far we've come. I have put in a very significant amount of time but I am not technically proficient enough nor have enough time to create and maintain/manage an independent site.

Hopefully, Defsync, you can assist us in taking this thread to the next level.

[underwater]

John------
Yes, stress clearly makes my POIS symptoms worse. I also sense a correlation between the extent and degree of arousal before orgasm and the intensity of POIS. There have been a few posters who have commented on arousal. I feel my condition has a psychogenic component that interplays with my chemistry. After arousal/orgasm, it's like trying to prevent single notes on the piano from becoming chords, I just can't stop it; the POIS dirge plays again. The other day, arousal and small semen loss and ouch!, mini POIS. My problem seems neurochemical, neuromuscular and psychological.
Right now I'm looking for a long term, natural anxiety/anti-inflammatory reducer. Presently I am experimenting with Quercetin. I have had bad allergic reactions to all my herbal and amino acid supplements. It's very distressing.

[demografx]

Thanks. I havent really shared yet =)

Defsync, when I said thanks for sharing your experiences, this is what I was referring to (below). In my opinion, you communicated (shared) quite a bit of good emotion that we could all relate to:

-i've been looking for information on this MY WHOLE LIFE.

-what the op describes in his first post i've experienced my whole life as well.

-okay so $20,000 of brain MRI and EKG found nothing.

-I havent gone as far as an endo makeup, though I should in the near future.

-I cannot function at WORK for a few days after a climax of any kind.

-try telling your wife or girlfriend that no, you really dont like sex cause it !@#$!#@ your head up in an utterly frightening way.

-You want to know what it's like? Here, let me shoot you up with some nice tranquilizer that lasts for days and see how much fun you have.

-what gets hit?

memory recall
concentration and focus
vocal communication

-I have been abstinent most of my life because of it.

-it would be great to please a girlfriend al naturale without having to suffer like this.

-Man I cant wait to read this entire thread. Im saving it and I'm shoving it in my doctor and neurologists face.

[demografx]

I am experimenting with Quercetin. I have had bad allergic reactions to all my herbal and amino acid supplements. It's very distressing.

Underwater, best wishes with Quercetin. Maybe B_Jim will add this to our database.

Also, very sorry to hear about your herbal and amino acid supplements' disappointment.

[Defsync]

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.

[CertainlyPOIS]

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.

Good Job on that.

[CertainlyPOIS]

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.

you should put the forum web site as reference.

[aaronchi]

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

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

[demografx]

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.

[demografx]

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.

[Defsync]

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

[Defsync]

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.

[demografx]

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.

[demografx]

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.

[Defsync]

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)

[demografx]

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.

[Defsync]

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. =)

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

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

[demografx]

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*