[demografx]

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]

 

[demografx]

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

[demografx]

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..."

[Counterpoints]

Great work Demografx!

[demografx]

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%.

[CertainlyPOIS]

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.

[demografx]

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

[demografx]

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! []

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!

[demografx]

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.

[botbot]

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.)

[demografx]

Botbot, very admirable, you must have incredible determination to be able to force yourself to run in spite of the exhaustion, both mental and physical.

[CertainlyPOIS]

When i think irritabilty, little little things infuriate but those same things will never be a problem when am normal.

[martin88]

Thanks Demo for ALL the letters you sent recently!
I hope this will give us something positive. We didn't have a lot of chance with letters in the past.  It seems that the "famous" people are too busy to help us. I remember that Dr Waldinger said he could give us some strategies to explain what we can do to attract researchers (or to improve our condition, I don't remember exactly). It would have been great to have this from him.

Hi Botbot, I simply can't run 40 minutes in pois ! Except perhaps if I force myself but I'll suffer the consequences after this. I tried in the past and the maximum was 20 minutes. To give you a tip (you asked), when I'm in pois I have the tendency to stop moving. If you can avoid this as much as possible, not necessarily with the heavy exercise you mentionned, it will help a lot. Weight lifting has also been reported and it's true for me too. If you fill the questionnaire you'll also find some other tips from other people. Exercise, garlic, relora, protein diet, iodine, multivitamins, phosphatidylserine, treatment for hypothyroidism, DHEA, fenugreek, 5-HTP, SSRIs, testosterone,  ... and others were mentionned. If you search for these terms in our forum you'll find some possible side effects for these treatments.

[Counterpoints]

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! []

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!

I think the severity of symptoms, and even the presence of symptoms at all, has a lot more to do with the specific ejaculation, than most seem willing to consider.  As I've noted earlier, while symptomatic, an ejaculation can actually alleviate my symptoms, on occasion.  Also, the severity of symptoms does seem to vary depending, I think, on the ejaculation.

Others have mentioned this, (one sent me a PM about it), but I think most people have implicitly suggested this, in their posts.  It's just that instead of thinking it has anything to do with the nature of the ejaculation, it's more "didn't get enough sleep, frequency has been too high recently, didn't eat enough, ate too much, didn't have this vitamin," etc.  All of this is possible.  But it's also quite possible that the physiological response to orgasm varies, for other more subtle reasons.  Guthrie posted a fairly convincing reason for this.  (e.g. one orgasm causes over-activation, which the body in turn, over-suppresses, allowing a subsequent orgasm to compensate for this, by causing normal "activation", which is followed by normal "suppression").  Another explanation could be that, for instance, there is a % chance a pituitary, adrenal, or other abnormality is activated.  However, sometimes this activation won't occur.

Even if something like testosterone helps, there could still be some underlying cause that is being activated to different degrees, based on a particular response to a particular ejaculation.

[Pronobis]

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,....................

Great job Demo, I follow all you do here, even if I have nothing to add, I will keep you in touch about my endocrinologist (?) rendez vous.

[demografx]

Great job Demo, I follow all you do here, even if I have nothing to add.

Thanks, Pronobis, but Martin and Counterpoints deserve most of the credit for the WHO letter itself. I was just a catalyst who instigated and helped facilitate things (after you yourself initiated the idea!) and pestered people to move as quickly as possible! []

I will keep you in touch about my endocrinologist (?) rendez vous.

Excellent! We are all looking forward to hearing your progress!

Pronobis, don't forget the suggestion to show your endocrinologist Waldinger's paper. Also, point out that the study co-author is also an endocrinologist. Just send your regular email addresss by Private Message to me or to Pyropeach and we'll email you the paper. (Waldinger's study can only be sent via regular email, not forum Private Message)

[demografx]

I think the severity of symptoms, and even the presence of symptoms at all, has a lot more to do with the specific ejaculation, than most seem willing to consider.  As I've noted earlier, while symptomatic, an ejaculation can actually alleviate my symptoms, on occasion.  Also, the severity of symptoms does seem to vary depending, I think, on the ejaculation.

Others have mentioned this, (one sent me a PM about it), but I think most people have implicitly suggested this, in their posts.  It's just that instead of thinking it has anything to do with the nature of the ejaculation, it's more "didn't get enough sleep, frequency has been too high recently, didn't eat enough, ate too much, didn't have this vitamin," etc.  All of this is possible.  But it's also quite possible that the physiological response to orgasm varies, for other more subtle reasons.  Guthrie posted a fairly convincing reason for this.  (e.g. one orgasm causes over-activation, which the body in turn, over-suppresses, allowing a subsequent orgasm to compensate for this, by causing normal "activation", which is followed by normal "suppression").  Another explanation could be that, for instance, there is a % chance a pituitary, adrenal, or other abnormality is activated.  However, sometimes this activation won't occur.

Even if something like testosterone helps, there could still be some underlying cause that is being activated to different degrees, based on a particular response to a particular ejaculation.

That's fascinating, CP! And very hopeful news! When you say varying POIS effects are due to "the specific ejaculation" I wonder if that could also include the sufferer's particular goings on at the time. For example, there was a very significant addition of stress for me this last time. Couldn't that trigger a "different physiological response" as you surmise?

The added-stress factor has been playing on my mind a lot as a reason for my most disappointing POIS episode since starting treatment!

And your theory that testosterone might not be the whole picture, I'm starting to believe is right...even though I don't want to believe it! []

[demografx]

CP, you may be interested to know that I did my last blood test (last week) symptomatic. So now I will have in-POIS and out-of-POIS comparisons.

To everyone: CP convinced me and others here that in-POIS tests are the best way to start, followed by out-of-POIS comparison.

[Counterpoints]

I think the severity of symptoms, and even the presence of symptoms at all, has a lot more to do with the specific ejaculation, than most seem willing to consider.  As I've noted earlier, while symptomatic, an ejaculation can actually alleviate my symptoms, on occasion.  Also, the severity of symptoms does seem to vary depending, I think, on the ejaculation.

Others have mentioned this, (one sent me a PM about it), but I think most people have implicitly suggested this, in their posts.  It's just that instead of thinking it has anything to do with the nature of the ejaculation, it's more "didn't get enough sleep, frequency has been too high recently, didn't eat enough, ate too much, didn't have this vitamin," etc.  All of this is possible.  But it's also quite possible that the physiological response to orgasm varies, for other more subtle reasons.  Guthrie posted a fairly convincing reason for this.  (e.g. one orgasm causes over-activation, which the body in turn, over-suppresses, allowing a subsequent orgasm to compensate for this, by causing normal "activation", which is followed by normal "suppression").  Another explanation could be that, for instance, there is a % chance a pituitary, adrenal, or other abnormality is activated.  However, sometimes this activation won't occur.

Even if something like testosterone helps, there could still be some underlying cause that is being activated to different degrees, based on a particular response to a particular ejaculation.

That's fascinating, CP! And very hopeful news! When you say varying POIS effects are due to "the specific ejaculation" I wonder if that could also include the sufferer's particular goings on at the time. For example, there was a very significant addition of stress for me this last time. Couldn't that trigger a "different physiological response" as you surmise?

The added-stress factor has been playing on my mind a lot as a reason for my most disappointing POIS episode since starting treatment!

And your theory that testosterone might not be the whole picture, I'm starting to believe is right...even though I don't want to believe it! []

Stress could make a difference.  It's hard to say.  It seems the severity of POIS following a given ejaculation varies from time to time, for many of us.  However, these changes have often been attributed to external factors -- sleep, supplements, frequency, etc. (By me, you, and others).  These could definitely have an effect.  However, I'm wondering if there is something more internal that is happening.  In other words, I wonder if we were to keep all of these other factors constant -- sleep, frequency, etc. -- whether the severity of POIS will still vary from ejaculation to ejaculation.

This is definitely the case for me. 

[Counterpoints]

CP, you may be interested to know that I did my last blood test (last week) symptomatic. So now I will have in-POIS and out-of-POIS comparisons.

To everyone: CP convinced me and others here that in-POIS tests are the best way to start, followed by out-of-POIS comparison.

Good luck! I can't promise there will be a difference, but I hope this may give some additional information.