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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6458212 times)

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 »
 

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.
 

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.

 

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. 
 
 

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!!!
 

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.
 

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?
 

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!!
 

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!!!
 

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
).

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

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!
 

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 »
 

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".
 

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.
 

Offline demografx

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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.
 

Offline demografx

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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
).[/b]

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 »
 

Offline 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
« Last Edit: 29/05/2009 21:51:52 by demografx »
 

Offline 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 »
 

Offline Counterpoints

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

Offline 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 »
 

Offline CertainlyPOIS

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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.
 

Offline demografx

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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 »
 

Offline 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 »
 

Offline 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 »
 

Offline botbot

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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.)
 

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4449 on: 31/05/2009 06:09:58 »

 

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