Post Orgasmic Illness Syndrome (POIS)

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Offline Pronobis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4400 on: 24/05/2009 04:07:25 »
Pronobis' and Martin's posts in French

I just deleted a long post of mine, initially excited when I saw #1 Google results by searching on several words from Pronobis' and Martin's posts in French.

But I then thought that maybe the search engine in France might work differently from ours. So I searched again, this time using Google.fr (Google France) and then...everything was turned upside down. I couldn't find the posts even in the first 3 pages of results!

I tried Google.fr once again, this time adding "POIS" to Pronobis' and Martin's words. Sure enough, we came up #1. But that's cheating[:)] So...I guess we have more work to do to figure this out!

You are right Demo, I have searched and I couldn't find. I don't think that people will search like you did. Only "fatigue après le sexe" and that's all. I will try to give a answer in French

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4401 on: 24/05/2009 04:53:44 »

 I suppose, the first thing that I should do is, like Demografx said, to test my testosterone.
 

Pronobis, testosterone is only one hormone that I was tested for. The other hormones are mentioned in my post addressed to you May 19, on Page 186, Message ID 253144.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg253144#msg253144
« Last Edit: 24/05/2009 06:48:45 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4402 on: 24/05/2009 05:07:09 »
Pronobis, regarding Google, I think the answer lies in having numerous posts in French in order to have Google.fr recognize us. Unfortunately, that's just not practical for us to do here. If anyone sees this differently, please share your thoughts. Thanks much for the efforts here.

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Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4403 on: 24/05/2009 06:30:04 »
Hey guys.  Anybody wake up with excess "white stuff" in your mouth? I just realized I have candida and that is the main cause of my brain fog, it can cause hypoglycemia and a range of other symptoms.  Right now I am taking acidophilus, and eating non sugar/carbohydrate foods.  I believe this relates to pois somehow, maybe if some of you guys have candida.

Good discovery.  I'm curious to know if the acidophilus is effective.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4404 on: 24/05/2009 06:43:11 »
Limejuice, nice to see you again.

goingcrazy, we've had a fair amount of discussion about candida. Here are some previous posts. To maximize the search of a specific message after you click on the link, use Ctrl + F and look for keyword(s) describing the post you're looking for.
http://www.google.com/search?hl=en&q=candida+POIS+site%3Ahttp%3A%2F%2Fthenakedscientists.com&aq=f&oq=&aqi=

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4405 on: 24/05/2009 18:34:06 »
I'm pretty sure POIS is not due to "candida".  It seems like naturopaths have been blaming yeast infections on pretty much every difficult to explain problem.  It doesn't seem like good science to me, and the odds that it has something to do with POIS are extraordinarily low IMO.  If there are some good scientific journal sources that could be used in a logical argument to dispute that assessment, please let me know.  I just don't want people to waste their time.


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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4406 on: 25/05/2009 06:21:52 »
Thanks, CP, you bring a lot of scientific credibility to this forum.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4407 on: 25/05/2009 18:46:06 »
B_Jim, I think the question is also whether or not candida is related to POIS.

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4408 on: 26/05/2009 03:53:05 »
Thank you very much Ambient for your post. About 5-htp there is an article on a site in french saying that peak-x can be present in 5-htp, however I think there is no proof it's harmful. See precautions :

http://translate.google.ca/translate?hl=en&sl=fr&u=http://www.passeportsante.net/fr/Solutions/PlantesSupplements/Fiche.aspx%3Fdoc%3D5_htp_ps&ei=R1gbSsvdLcqrtgen39TrDA&sa=X&oi=translate&resnum=1&ct=result&prev=/search%3Fq%3D5-htp%2Bpasseport%2Bsant%25C3%25A9%26hl%3Den%26lr%3Dlang_fr%26safe%3Doff

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4409 on: 26/05/2009 18:20:18 »
WHO PROJECT

Thanks to Pronobis' suggestion, we have completed a letter, ready to be sent to WHO (World Health  Organization).

This letter was drafted first by Martin, then Counterpoints, and it was so good I had nothing to add! (The truth is that I'm just too lazy : - )

Hopefully WHO can recommend a research source to further study POIS.

Thanks, everyone!
« Last Edit: 26/05/2009 18:24:17 by demografx »

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4410 on: 26/05/2009 21:04:29 »
SWeet job everybody.  Another giant idea. If WHO recognizes this then we have made it.
Isnt there something that can be done about the wikipedia page it really dismisses pois as some  minor migrain.

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4411 on: 27/05/2009 02:02:48 »
Thanks to all! I think we'll wait a few days to send the letter just to correct minor errors. Then we'll write it here.

Pronobis' and Martin's posts in French

I just deleted a long post of mine, initially excited when I saw #1 Google results by searching on several words from Pronobis' and Martin's posts in French.

But I then thought that maybe the search engine in France might work differently from ours. So I searched again, this time using Google.fr (Google France) and then...everything was turned upside down. I couldn't find the posts even in the first 3 pages of results!

I tried Google.fr once again, this time adding "POIS" to Pronobis' and Martin's words. Sure enough, we came up #1. But that's cheating[:)] So...I guess we have more work to do to figure this out!

Pronobis, regarding Google, I think the answer lies in having numerous posts in French in order to have Google.fr recognize us. Unfortunately, that's just not practical for us to do here. If anyone sees this differently, please share your thoughts. Thanks much for the efforts here.


Demografx, it was very nice to see this problem with google.fr

I made a mistake, I put a "*" without space in front of the keywords. So if you search for "*maux de tête" you'll find it but you won't find "maux de tête" ... [::)
I made the correction, I think it will be updated. Otherwise I'll post it again. The page is still cached with the error :
http://74.125.113.132/search?q=cache:IapIerABfdUJ:www.thenakedscientists.com/forum/index.php%3Ftopic%3D6576.msg253397+*maux+de+t%C3%AAte+site:thenakedscientists.com&cd=1&hl=fr&ct=clnk&gl=fr

I'm still thinking it's a good idea to write translations in our forum :
I think that trying to attract people from other countries, on the best existing site about pois, is  legitimate.
Our site should appear in google.fr. If google is not able to do this for now I hope it will be in the future. With time our forum will improve its ranking and perhaps things will change, even if it's true that google.fr gives the priority to french language.
Search engine optimization (SEO) is something which is constantly updated. The algorithms used by Google are always improving to adapt to many situations.

And anyway we can actually find in page 12 in google.fr the keyword entered by Pronobis:
http://www.google.fr/search?q=fatigue+apr%C3%A8s+le+sexe&hl=fr&start=110&sa=N
 
or page 22 (!) for these keywords : 
http://www.google.fr/search?q=fatigue+orgasme&hl=fr&start=210&sa=N


Best of all, some french people know that the most universal language is english so if they are doing some research in english they can put google.com in their start page instead of google.fr.
Also I see that google.com gives a lot of results in french as well.
Then if they search for "fatigue après le sexe" in google.com they'll find it immediately on page one:
http://www.google.com/search?hl=en&q=fatigue+apr%C3%A8s+le+sexe&aq=f&oq=&aqi=
It's useful if they didn't think to search it with english keywords.

So I think nothing is lost!

« Last Edit: 27/05/2009 03:15:37 by martin88 »

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4412 on: 27/05/2009 02:22:05 »
An other possibility is that canadian people will search for french keywords. (a part of the country is bilingual, they speak french and english)

If they search this in google.ca, our forum is in the first page :
http://www.google.ca/search?hl=en&safe=off&q=fatigue+apr%C3%A8s+orgasme&btnG=Search&meta=lr%3D
« Last Edit: 27/05/2009 02:25:59 by martin88 »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4413 on: 27/05/2009 03:18:42 »
RE. MARTIN'S POSTS ABOVE ABOUT GOOGLE

Martin, thank you! I thought it wasn't possible, but you give many reasons to be hopeful! I'm not sure you covered it in your post, but certainly people in the U.S. of French ancestry or descent would search Google here and probably not Google.fr., even though the search terms might be in the French language.

Amazing how well we do in Google.ca, as you demonstrated.

Thanks again for all your excellent ideas!
« Last Edit: 27/05/2009 04:33:12 by demografx »

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4414 on: 27/05/2009 03:45:00 »
I have an idea on spreading to different countries.
Am guessing other countries have blogs or like a yahoo question/answer.
We go to their yahooos ask/answer, ask and answer our questions on pois in their language and put a link to our website.
All we need is google translator.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4415 on: 27/05/2009 04:06:15 »
Martin, thanks for posting that article on 5-HTP. I didn't realize it was that controversial! Perhaps potential users here should exercise caution and study up on it before trying it.

UC Berkeley's Wellness Letter has some serious cautionary advice about 5-HTP, concluding that "the potential dangers of 5-HTP outweigh any possible benefits."
http://www.wellnessletter.com/html/ds/ds5HTP.php

« Last Edit: 27/05/2009 05:58:13 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4416 on: 27/05/2009 04:27:41 »

Isn't there something that can be done about the wikipedia page? It really dismisses pois as some minor migraine.


CC, we just need some patience for now. POIS was in danger of being deleted altogether.

As Counterpoints mentioned in a recent post, "I disagree with the person's editorial ideas; I don't think that one should follow protocol exactly, if it sacrifices the quality and accuracy of an article.  I'll probably leave the article as-is for awhile though, since there was a deletion debate and the result was keep."

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4417 on: 27/05/2009 06:11:45 »
The Science of Orgasm

This book reference has appeared authoritatively in a number of publications and on the Internet. One of the 3 authors of The Science Of Orgasm is an endocrinologist in Mexico. I was thinking of writing to him and inviting him to this forum and to see if he has any ideas on how we can further advance the little POIS research that has been done.

Any other ideas, thoughts, comments?

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4418 on: 27/05/2009 06:44:17 »
I will rather have that wiki page deleted but i guess you are right. 
On the science of orgasm, if mexico endocrinologist does not respond. I have the other two authors emails and have talked to both of them may be they can influence him.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4419 on: 27/05/2009 07:54:51 »
That's terrific, CC!

What transpired in your discussions with the other two?

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4420 on: 27/05/2009 13:44:27 »
certainly people in the U.S. of French ancestry or descent would search Google here and probably not Google.fr., even though the search terms might be in the French language.
I agree with this. I'm also using google.com frequently.

UC Berkeley's Wellness Letter has some serious cautionary advice about 5-HTP, concluding that "the potential dangers of 5-HTP outweigh any possible benefits."
http://www.wellnessletter.com/html/ds/ds5HTP.php
They're also saying :"there have been no confirmed cases of the illness from 5-HTP supplements". This will help those who have already taken this supplement.

I have an idea on spreading to different countries.
Am guessing other countries have blogs or like a yahoo question/answer.
We go to their yahooos ask/answer, ask and answer our questions on pois in their language and put a link to our website.
Good idea CC. We can also find places where the question is already asked. Links are importants for our ranking in the search engines too.

Very good for the authors of the book. I hope it will work.
« Last Edit: 27/05/2009 13:51:13 by martin88 »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4421 on: 27/05/2009 22:24:27 »
Martin, once again you make excellent points above!

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4422 on: 27/05/2009 22:33:28 »


Our POIS thread at Naked Science Forum has now exceeded 300,000 views. Hopefully this means that many POIS sufferers worldwide are reading our posts and finding some strong measure of hope and/or symptomatic relief from our sustained efforts to bring this debilitating syndrome out into the open for a good fight. And we are winning!
« Last Edit: 28/05/2009 21:11:41 by demografx »

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Offline botbot

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4423 on: 27/05/2009 23:03:51 »
I'm male, age 37, and have had POIS for at least 15 years.  I only see a doctor for serious issues, so I was disappointed when an endocrinologist essentially said that it's probably just in my head.  My POIS pattern is quite predictable.  Ejaculation at night (for example); become very talkative that night.  Day 1: a kind of artificial energy in the morning, followed by growing fatigue in the afternoon and night and an markedly increased appetite.  Day 2: intense fatigue, tired eyes (I wish I had a better description), irritability, not "feeling myself," difficulty concentrating, increased appetite (often sweets, which I typically don't care for).  Then on Day 3 I'm fine; it's as if my tank has been refueled.  FYI, I was recently diagnosed with hypothyroidism/Hashimoto's disease.

What helps?  I try to limit ejaculation to once a week.  I also find eating a lot on Day 2 helps as does intense exercise.  Of course, it's immensely challenging to exercise, but I do feel a lift, so I try.

Any other tips on how you effectively cope?  I think if we all contribute our tips, it may improve the quality of life for many of us.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4424 on: 28/05/2009 03:02:18 »


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



The consensus at this forum to heal your POIS, is to start with hormonal bloodtesting, preferably with an endocrinologist.
 
Here are some POIS forum resources which may be helpful to you:

Please see "B_Jim"'s POIS Forum 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:
http://www.youtube.com/watch?v=UWBxAUC9k1g

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here. This will also enable us to work more easily with outside researchers by having more organized data available about us:
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only study on POIS by Dr. Marcel Waldinger,MD and Dr. David Schweitzer, MD.

If you want a copy (PDF), send "Pyropeach" a Private Message with your regular email address and he'll send you back the PDF.

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, e.g., "pyropeach".

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 the medical world - which often shows little understanding and is sometimes skeptical of our condition - that POIS has scientific underpinnings and that POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapist community.

Also, it can be helpful when dealing with medical professionals to point out the successful existence of our rapidly growing forum for over 2 years, which has attracted over 100 POIS sufferers worldwide who have posted here, plus more than 300,000 page visits. Not bad for a rare malady!

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4425 on: 28/05/2009 03:12:18 »
Botbot, I showed my endocrinologist the POIS paper by Waldinger. The study's co-author is also an endocrinologist, so I pointed that out to my doctor and my sense is that the research paper increased credibility immediately with my endo. I think others here have had similar experiences.
« Last Edit: 28/05/2009 03:22:12 by demografx »

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4426 on: 28/05/2009 05:24:36 »
That's terrific, CC!

What transpired in your discussions with the other two?

The lady author was more receptive
- I told her my symptoms
- she told the other author who wasnt to receptive
- he just asked about my symptoms and some questions and stop there.
- She recommneded that sex seminar that i told the group months ago.
- told me good luck and keep her informed.

I have emails if you want to talk to them.

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4427 on: 28/05/2009 05:26:06 »
How much does it generally cost to see the endo including lab.
am going to have to pay to see endo and i am trying to plan ahead.


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Offline botbot

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4428 on: 28/05/2009 06:07:17 »
Botbot, I showed my endocrinologist the POIS paper by Waldinger. The study's co-author is also an endocrinologist, so I pointed that out to my doctor and my sense is that the research paper increased credibility immediately with my endo. I think others here have had similar experiences.

Thank you, demografx.  I have an endo appointment in mid-June, so I plan to do the reading/viewing you suggest.  It's amazing to read posts that detail symptoms similar to my own.  I should have added that my eyes also tend to tear and my heart feels as though it's speeding up on the day after ejaculation.  Listing all these symptoms, I imagine some unfamiliar with POIS would see a hypochondriac.  Let me be clear, though: I see a doctor only for serious things and have mentioned my condition to only 3 people in my entire life.  Not that I wish POIS on anyone, but I'm glad there is a community for exchanging insights.  Thanks again. 
 

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4429 on: 28/05/2009 06:43:41 »
Botbot, we have all been ignored, ridiculed and shipped off to psychiatrists.

In my case, I have 30+ years of this, but just when I would throw in the towel I would once again renew my effort. Something good, albeit small, usually came out of the effort.

My endo even apologized for not having seen that NY Times article himself!

My conclusion is that we have to form partnerships with the medical world, even take a leadership role, but without stepping on egos! Tricky, tricky, tricky!!!

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4430 on: 28/05/2009 06:55:17 »

How much does it generally cost to see the endo including lab. Am going to have to pay to see endo and i am trying to plan ahead.


CC, it varies wildly by location and other factors. Best bet is to pick 1-2 likely candidates and just call the office and ask them for the average cost of (a) an initial consultation and (b) follow up visit(s) and (c) labwork - hormonal workup.

You might also inquire about payment terms, see if they can be stretched out.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4431 on: 28/05/2009 07:11:03 »

That's terrific, CC!

What transpired in your discussions with the other two?


The lady author was more receptive
- I told her my symptoms
- she told the other author who wasnt to receptive
- he just asked about my symptoms and some questions and stop there.
- She recommneded that sex seminar that i told the group months ago.
- told me good luck and keep her informed.

I have emails if you want to talk to them.


That's excellent, CC! Would you know how to obtain the email of the 3rd co-author, Carlos Beyer-Flores, endocrinologist, head of the Laboratorio Tlaxcala in Mexico? Maybe the other 2 will give it to you if you remind them you chatted before?

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4432 on: 28/05/2009 07:15:20 »

Thank you, demografx.  I have an endo appointment in mid-June, so I plan to do the reading/viewing you suggest.


Terrific on both counts!!

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Offline Pronobis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4433 on: 28/05/2009 18:32:54 »
welcome to the club, Botbot. What kind of irritability you have ?

300.000 hopes for our future glory!!!

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4434 on: 28/05/2009 19:35:23 »
I just wrote a letter to Mary Roach, author of "10 Things You Didn't Know About Orgasm" (her YouTube is at http://www.youtube.com/watch?v=7jx0dTYUO5E).

I invited her to see our forum and asked her if she can make recommendations to us to further research our condition.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4435 on: 28/05/2009 23:04:57 »
CCconfucius, I sent an email to an address in Mexico asking if this is how Dr. Carlos Beyer-Flores can be reached. But the address looks old, and applies to too many people. So if you can easily find it, thanks!

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4436 on: 28/05/2009 23:14:49 »

SEARCH POIS FORUM WITH GOOGLE

I just stumbled on this. As many of you know, the POIS forum  Search function is a work in progress. Can be frustrating.

So I searched Google to see how to better Google-search our POIS Forum. Why? Because we have an overwhelming amount of data: over 2 years' worth of posts from 130+ Forum members.

In the Google search box, type
whatever you're interested in finding[space]site:http://www.thenakedscientists.com/

for example, I tried
demografx site:http://www.thenakedscientists.com/

and 1,000+ results came up for "demografx" within POIS Forum.

whenever I tried to use Google "as is" - without the way I described above - I would typically find only about two (2) results.

Google even provides you results with the Message# for each result.

Happy Googling!


Botbot, from last year, I thought it might be interesting to re-post this to help make it easier to search for previous POIS posts here, on an area of interest to you, e.g., specific symptoms, remedies, experiences, etc.

After you see the search results and click on a link of interest to you, it will take you to the page where that post is located. So it will help to then use Ctrl + F, using a keyword(s) from that post description, to zero in more quickly on the specific post you're interested in.
« Last Edit: 29/05/2009 01:15:03 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4437 on: 29/05/2009 03:47:26 »
CC, when I called the endo's office before my first visit, I said the reason for the visit was to check for "hormonal imbalance".

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4438 on: 29/05/2009 04:10:16 »
Did you google the info or how did you get information.
I will send the author a message about it an inform her that co writter on dr waldingers paper is endocrinologist and that is why we want info.

I plan to exactly that, but instead of going through my doctor am going to go to a different hospital and say i dont have insurance and start all over. without mentioning orgasm.

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4439 on: 29/05/2009 06:16:41 »
CC, the Waldinger/endo angle to the co-author sounds good.

Yes, I did a lot of google searching to find the Mexican endo/author.

I agree, downplaying orgasm is a good idea.

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4440 on: 29/05/2009 20:58:04 »

I just wrote a letter to Mary Roach, author of NY Times Top 10 Best Seller...Bonk: The Curious Coupling of Science and Sex, and speaker on "10 Things You Didn't Know About Orgasm" (her YouTube is at http://www.youtube.com/watch?v=7jx0dTYUO5E).

I invited her to see our forum and asked her if she can make recommendations to us to further research our condition.


Mary responded yesterday. Directly below is her letter to me, followed by my reply to her today.

In a message dated 5/28/2009 8:34:30 P.M. Pacific Daylight Time, Mary Roach writes:

Hi [demo] -- I wish I'd known about POIS when I was working on Bonk [NY Times Top 10 Best Seller...Bonk: The Curious Coupling of Science and Sex]. I never actually came across it before. It sounds just awful. 

I'm finishing up a new book these days so not doing any writing on sex, but I could send a note to the New Yorks Times journalist who writes the Well column in the Science Times each Tuesday.   She might be interested in covering it.  She's very good and thoughtful.  Shall I do that?

Bestest,
Mary


In a message dated 5/29/2009 12:34:20 P.M. Pacific Daylight Time, <demo> writes:


Dear Mary,
 
Thank you so much for that! Yes, please do send the note to the journalist at the Times. By the way, an interesting article appeared in the Times by their psychiatrist-journalist, Dr. Friedman. It's not quite our condition, but comes close (it's shorter-term) - and he agrees that postorgasmic depression (which is only one symptom) is emphatically NOT "in our heads".
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=3&scp=1&sq=friedman%20sexual%20January%2020&st=cse
 
It is so important to get validation from a professional such as yourself that POIS is not "all in our heads." For too many years (over 30 in my case), POIS sufferers have experienced so much added misery from widespread lack of understanding. The first reaction of many physicians is to ship us off to a psychotherapist or psychiatrist.
 
At this time, we believe that endocrinology holds the key to many of our problems. Attached is a copy of the first paper written on POIS in 2002. The co-author is an endocrinologist.
 
Thank you again for all your help!
 
My very best regards,
[demo]

 
« Last Edit: 29/05/2009 21:04:04 by demografx »

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4441 on: 29/05/2009 21:16:13 »
Letter today from me to Dr. Carlos Beyer-Flores, endocrinologist, co-author of The Science of Orgasm

Subject: Post Orgasmic Illness Syndrome (POIS)

Dear Dr. Beyer-Flores,
 
I received your email address from Gabriela González-Mariscal.
 
I am very impressed with your work and your textbook, The Science of Orgasm.
 
I moderate a rapidly growing Internet forum of people who suffer from a rare debilitating malady that causes days or weeks of  physiological agony after orgasm. It is not psychological, and it is poorly understood by the medical world.
 
POIS was first studied in the Netherlands by  Dr Marcel Waldinger, MD and Dr David Schwartz, MD, an endocrinologist, in 2002. Attached is a copy of their research study. Dr. David Schwartz, the co-author of the study, is the endocrinologist, which is one reason I thought of contacting you. Another reason is that in our forum (please see link immediately below) , we feel that endocrinology is the key to unlock some of the secrets of POIS.
 
Please take a moment to visit our forum at http://www.thenakedscientists.com/forum/index.php?topic=6576.new#new
 
Perhaps your advanced scientific perspective can give us an idea how to get our condition further researched to cure POIS! We have not successfully attracted researchers yet, although academic interest is growing. So we have only made very modest inroads into treatment.
 
Dr. Flores, I look forward to hearing from you!
 
Best regards,
 

"demografx"
POIS Forum Moderator
 
ps -  we have a YouTube about POIS at http://www.youtube.com/watch?v=UWBxAUC9k1g
« Last Edit: 29/05/2009 21:51:52 by demografx »

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4442 on: 29/05/2009 21:25:32 »
Mary Roach update:

"I've [Mary Roach] sent it along to her [to The NY Times' Science Times' Well column journalist, today, 5/29].  Will let you know what I hear..."
« Last Edit: 29/05/2009 21:50:34 by demografx »

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4443 on: 30/05/2009 03:50:23 »
Great work Demografx!

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4444 on: 30/05/2009 10:37:44 »
Thanks, CP!.....on another topic, I had a comparatively rough day today, Day Zero, my POIS kicked in, but worse than in a long time. Frequency is why.

Frequency has to be kept in check! With testosterone treatment, It looks like 1X to 2X max per week is my limit. I can't complain, though, it used to be 1X every 2 months, with full-blown POIS agony for 4 days.

It's now Saturday, 3:17 am and POIS has been wearing off, so this time it'll probably be a 70-75% cure, not 90%.
« Last Edit: 30/05/2009 11:28:35 by demografx »

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4445 on: 30/05/2009 22:47:40 »
demographx good job,
I love the way you are broadcasting it.
I think it is time for you to check other hormones other than testerone, you might something else low. may be neurotransmitters.

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4446 on: 30/05/2009 22:48:36 »
WHO Update

Thanks again, Pronobis, Martin and Counterpoints and everyone else who contributed! This email went to WHO today. Hopefully, we will get a reply.



From:  (demo personal email)
To:     WHO (World Health Organization)
Sent:   5/30/2009 11:04:20 A.M. Pacific Daylight Time
Subj:   Seeking help for our medical condition


Dear WHO,

We are writing to inform you about a serious new medical condition, and to ask for help; could you provide us with the name of an association or person who would have the resources to research this condition?

The first cases were officially described in 2002, by Dr. Marcel Waldinger (MD PhD) and endocrinologist Dr. David Schweitzer, MD.(http://www.ncbi.nlm.nih.gov/pubmed/11995603).  He referred to the condition as "Post Orgasmic Illness Syndrome" (POIS).

Essentially, those with POIS usually suffer debilitating symptoms that follow within minutes of orgasm, and last for days. The symptoms include word finding difficulty, anxiety, severe cognitive impairment, irritability, and fatigue, but there are also other notable symptoms.   Some with this condition have reported increased cortisol levels (e.g. over 200% of the upper reference for 24 hr urine cortisol).  Others have increased prolactin (over 400% of the upper reference), or decreased testosterone.  Pituitary abnormalities have been found in those who have had pituitary MRI scans.  One sufferer was found to have adrenocortical carcinoma.  Over 97% of the reported cases have been from men.


Quite alarmingly, the number of reported cases is increasing at a rapidly increasing rate.  Presently, about 300 cases can be found directly (or are linked) on a UK Science forum, "The Naked Scientists", which is administrated by a Cambridge medic.  Other cases are being increasingly described by the ISSM (International Society for Sexual Medicine).


Please consider this carefully.  A helpful response could save many lives.  If you have any questions, or need more information, please ask.  Several prominent scientists with reputable university affiliations feel that this condition is in urgent need of research attention.

Best regards,

(first name, last initial)
aka "demografx"
Moderator
POIS Forum
representing 300 POIS cases reported, and 300,000 + page views
http://www.thenakedscientists.com/forum/index.php?topic=6576.new#new
« Last Edit: 30/05/2009 23:06:41 by demografx »

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4447 on: 30/05/2009 22:53:09 »

demographx good job,
I love the way you are broadcasting it.
I think it is time for you to check other hormones other than testerone, you might something else low. may be neurotransmitters.


Thanks a lot, CC!

I did do a fairly extensive hormonal workup (http://www.thenakedscientists.com/forum/index.php?topic=6576.msg253144#msg253144), testosterone simply looked like the culprit, everything else was ok except prolactin, which puzzled the endo, led to an MRI of the brain (pituitary) but so far hasn't yielded any POIS suspicion (but who knows?).

You might be right about neurotransmitters. Gee, I haven't even solved the high-prolactin problem! Finding a cure can be as exhausting as POIS itself! [;D]

Thanks again for the support, CC!

ps - I thought I'd be "cured" today, but I still do have a bit of a POIS hangover. I hope it's the frequency lately and that the testosterone hasn't stopped working its magic!!

Next round(s) will tell!
« Last Edit: 31/05/2009 00:34:56 by demografx »

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4448 on: 30/05/2009 23:38:15 »
SHORTENED LINK TO OUR LATEST POIS FORUM POST

The link to our latest post (http://www.thenakedscientists.com/forum/index.php?topic=6576.new#new) can look rather unwieldy, especially when we give it to outsiders (e.g., NY Times, WHO, our doctors, etc.) - and even moreso for some poor reader who sees it in print somewhere! So... I just created a "tiny url", which should make communicating our site address a heck of a lot easier.

Feel free to give this one out:

w w w . t i n y u r l . c o m / k v d h h z

For some reason, this system won't allow me to type the above link "as-is"...so after struggling with this, I put a space after each character, and it went through. Sorry for the inconvenience, but just re-type it without the spaces! It also works without http://www.
« Last Edit: 31/05/2009 00:08:55 by demografx »

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4449 on: 31/05/2009 06:09:58 »
welcome to the club, Botbot. What kind of irritability you have ?

300.000 hopes for our future glory!!!

The irritability stems from that ultra-drained feeling.  It's worse when the exhaustion I feel around my eyes peaks.  I mentioned this previously, but intense cardio exercise is a remarkable help.  After doing a run outside for about 35-40 minutes, I feel a surge of energy and what might be called enhanced well being for most of the rest of the day.  I suspect that just as POIS relates to something going haywire with hormones/chemicals, running causes a counter effect of positive hormones/chemicals.  If you haven't tried running treatment, you may want to consider it.  It's no cure, but it helps me.   (The challenge, of course, is that one doesn't want to run during a POIS low point.)