[demografx]

hi demo,
can you email me that waldinger study?
thanks

Sure. For PDF, PM me your regular email. OR for just plain text embedded in long PM, email not needed. Let me know which is preferred.

[horizon]

hi demo,
can you email me that waldinger study?
thanks

Sure. For PDF, PM me your regular email. OR for just plain text embedded in long PM, email not needed. Let me know which is preferred.

text version as a PM would be great
thanks!

[Animus]

I have a hunch there would be a lot of people interested in POIS on the west coast because this is where a lot of the "sex/porn industry" is. I have a hunch a lot of these porn stars suffer from POIS. If I could I would even run an ad for a study just to see how big the response is.

I agree. My guess is that POIS is more prevalent with male pornstars than their female counterparts.

sorry to bring up pornstars- that was a bit tasteless.
Yesterday I emailed the director of the Center for Sexual Medicine at Boston University.
http://www.bumc.bu.edu/sexualmedicine/goals/

Has anybody been in touch with this institution yet?

[Animus]

I'm curious who among us are in touch with Dr. Waldinger- he wrote the first paper describing the illness- and is he planning any further research?? Thanks.

[prism]

I relate to this
http://www.usatoday.com/news/health/2009-01-05-fatigue-trauma_N.htm

[demografx]

hi demo,
can you email me that waldinger study?
thanks

Sure. For PDF, PM me your regular email. OR for just plain text embedded in long PM, email not needed. Let me know which is preferred.

text version as a PM would be great
thanks!

Sent.

[demografx]

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




Here are some POIS resources which may be helpful to you:


Our new POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

Please see "B_Jim"'s POIS 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:

Our new POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
http://forums.delphiforums.com/POIS/chat

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here.
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only formal medical investigation on POIS by Dr. Marcel Waldinger,MD and Dr. Dave Schweitzer, MD.

There are 2 ways to get it: (1) if you want a PDF copy, send me a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and I'll send you back the PDF. Or, if you prefer, (2) I can simply reply with a Private Message (no regular email needed) and provide you with a simple text version embedded in your PM.

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 my name, i.e., "demografx".


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 our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN OUR HEADS'! "

Also, it can be helpful when dealing with medical professionals to point out the successful existence of our rapidly growing forum, which has already been referenced in respectable sources such as the British Medical Journal and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For over 3 years, our POIS forum has attracted over 150 POIS sufferers worldwide who have posted here, plus over 700,000 page visits. Not bad for a rare malady!

[demografx]

nova, this post will help you find information about POIS that we have already discussed, by tailoring a Google search to this forum:


SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: 3 years' worth of posts (over 7,000 posts!) from 150+ Forum members, and an additional 150 POIS sufferers found elsewhere on the Internet by Member B_Jim.

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

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

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

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.

[demografx]

I'm curious who among us are in touch with Dr. Waldinger- he wrote the first paper describing the illness- and is he planning any further research?? Thanks.

I've been in touch, and so have a few others. He seems much more focused these days on PE (premature ejaculation), having written a book on the subject recently, and has not been responsive to our POIS research overtures.

His photo/bio:
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg201726#msg201726

He can be reached at
dr.m.d.waldinger@gmail.com

Good luck! []

[demografx]

Horizon, sad to say, we just don't know. We've all been guinea pigs!

yeah, whats the bettings "dr".richards is another lin!

Even money [] We've been thru a similar "Richards" discussion.

[demografx]

Yesterday I emailed the director of the Center for Sexual Medicine at Boston University.
http://www.bumc.bu.edu/sexualmedicine/goals/

Has anybody been in touch with this institution yet?

Animus, thank you, that's teriffic!

And please add to Martin88's database:
http://pois.vndv.com/email_list.php

[demografx]

I have a hunch there would be a lot of people interested in POIS on the west coast because this is where a lot of the "sex/porn industry" is. I have a hunch a lot of these porn stars suffer from POIS. If I could I would even run an ad for a study just to see how big the response is.

I agree. My guess is that POIS is more prevalent with male pornstars than their female counterparts.

sorry to bring up pornstars- that was a bit tasteless.

I disagree, Animus. I think yours is an excellent idea to test the "sex-in-overdrive" hypothesis of POIS, which has been bandied about here interminably.

It might also shed light on the theory of POIS genesis at the time of very early and excessive sexual experiences (around puberty or even pre-pubescent).

[demografx]

I have not used this forum previously, so I don't know if this post will go through properly.  I have read parts of this forum over the past 6 months, and it is obvious to me that I am a POIS sufferer. From the information that I read on this forum, I had my testosterone levels checked some months ago, and the results indicated that I had low levels.  I began to use Androderm patches several months ago - 10mg/day - and felt much better in terms of POIS and mood.  However, after a few months of this TRT the positive effects declined a fair bit.  I have read that as one continues on TRT, estrogen levels go up, canceling some of the effect of the increase in testosterone, and that the drug Amiridex (anastrozole)inhibits the production of estrogen.  My family doctor indicates that in Canada one cannot be tested for estrogen levels, although I am not sure that this is correct. Does anyone have any thoughts on this?  

nova, FWIW, I went from 10mg to 15mg (with endocrinologist approval) and feel much better. 50% increase. At my behest. I also ramp up on Day Zero to as much as 30mg. I'm not recommending this to anyone, just stating my experience. Check with your physician.

Occasionally, an added Levitra has sometimes provided a boost, as well as stimulants. Again, this is just me. Certainly not a formula for anyone else to follow!

My theory - which needs to be proved - is that for POIS we need more TRT than the traditional hypogonadism prescriptions, which is how you and I both were diagnosed and treated I presume.

[lauracostis]

 i have just recieved new test results. everything is in ranges except for: D3-low, hemoglobin-high, glucose-high. the only thing that rings a bell is that athletes who train in high altitudes have much higher hemoglobin levels because their cells are not getting enough oxygen, so the body produces more hemoglobin (which carries O2). only problem is that im at sea level, and i dont work out any more. my brain feels starved for oxygen, and it probably is if i am producing extra hemoglobin.

demo what were your t levels pre-TRT. my levels are:
total t =465 ng/dl, range= 332-896
free t =14.9 pg/ml, range= 5.0-40.0

[demografx]

one simple cheap semi-remedy i have used before, is to munch on a Centrum complete vitamin in the days following a NE. You just take a lil bite off the pill (1 pill should = 6 bites) throughout the day and for w/e reason it seems to help a bit with the mental fogginess. you do this every day for however long symptoms last.

i only know this works because this is how i take my multivitamin normally, and after a super super rare (like 1 in 3 years) NE I noticed it helped with the mental symptoms. realized i hadnt mentioned it before =/

I'll try it! Thanks.

[demografx]

demo what were your t levels pre-TRT. my levels are:
total t =465 ng/dl, range= 332-896
free t =14.9 pg/ml, range= 5.0-40.0

my free t seems like it might be a little low for a 29 year male. the range is just for a male, which includes children to grandpas, unless mine ranges are customized for my age.  the 5.0 in the range is probably for 5 year old boy, and the 40 is probably for a 18 year old, mine should be like a 25-30.

Laurac, thanks for reporting!

I've posted my exact T numbers here, but I can immediately see that yours are significantly better than mine were, pre-TRT.

However, as I mentioned to nova above, I believe that we (POIS sufferers) need more T than say, people-with-hypogonadism-but-without-POIS.

And again, I don't want to play doctor. I don't have the research evidence. I only have my own experience and surmising to share.

Thanks again, Laurac.

[demografx]

I have a hunch there must be alot of pensioners with POIS.
Most dont know how to use the internet to sign up to Nakedscientists!

On wikipedia it says Refractory Periods are about 20mins for 20 year olds,
but 20HOURS for 70 year olds!

Wow!

[demografx]

why does it take around 7 days to recover from POIS?

My theory - but far from fact - is that very slow sperm regeneration time (SRT) causes the long recovery.

Since TRT, my SRT is now very quick, and POIS is vastly reduced. When I'm "full" (again), I'm fine.

Anyone agree/disagree?

[demografx]

demographx, do you have a letter which you send to potential POIS researchers? I once sent out about 50 letters to urologists in New York, and I got one response referring me to a specialist. I am going to start up this process again.
Also, has someone compiled the survey data into a short form? Like a summary?
In a way we've done a lot of our own research and testing, and it would be good to document it. I am interested in doing that, will get started right away.

Martin88 makes an excellent point: we get the best results from Directors, Managers, i.e., generalists, rather than researchers. Of course, in some cases, we have no choice when it's an independent researcher.

Feel free to use/modify:

Dear Dr./Mr./Ms. X,

We would like to know if you would be interested in helping to research a serious new medical condition (described below). The smallest suggestion, idea, opinion or ideally a proposition from you to initiate some research, would be very welcome and appreciated. We already have a group of sufferers who would be willing to participate in a study.
 
The first cases were officially described in 2002, by Dr. Marcel Waldinger (MD PhD) and endocrinologist Dr. Dave Schweitzer, MD.(http://www.ncbi.nlm.nih.gov/pubmed/11995603).  He referred to the condition as "Postorgasmic Illness Syndrome" (POIS). His study results are attached.
 
Essentially, those with POIS usually suffer debilitating symptoms that follow within minutes of orgasm, and last for days. The symptoms include severe fatigue, anxiety, and cognitive impairment.
 
About 300 cases can be found directly (or are linked) on a UK Science forum, "The Naked Scientists", which is administered 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 lives.  If you have any questions, or need more information, please ask.
 
Best regards,
 
[Your username]
[or first name, surname initial - -
or full name if you're comfortable]
POIS Forum
h t t p : / / t i n y u r l . c o m / d 3 u v 8 8 [without spaces]


And please don't forget to add to Martin88's database:
http://pois.vndv.com/email_list.php

[Animus]

I'm curious who among us are in touch with Dr. Waldinger- he wrote the first paper describing the illness- and is he planning any further research?? Thanks.

I've been in touch, and so have a few others. He seems much more focused these days on PE (premature ejaculation), having written a book on the subject recently, and has not been responsive to our POIS research overtures.

His photo/bio:
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg201726#msg201726

He can be reached at
dr.m.d.waldinger@gmail.com

Good luck! []

Thanks!