[Itsthatskater]

Hey everyone, Im new to this forum and I thought I might have just been the only person in the world to have this disorder. I knew it wasnt something Physiological. This was really taking a toll on my body for about 48 hours after ejaculation. I think my most Severe Symptoms are Physical and Mental exhaustion and Extreme Lack of motivation. I feel absolutely terrible the following day, The day after that I am most likely feeling better.I told a few of my friends about my problem and I asked if they have ever felt any of the symptoms after Ejaculation and they said they feel more energized and alive after, That is a dream for me. I hope that one day they make a prescription for People similar to me to go on so that we can live a more normal life. If anyone else can relate to my symptoms go ahead and reply.

Thanks,
Brett

[demografx]

itsthatskater, and rjmlr, welcome to the POIS thread of The Naked Science Forum!




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

Our new POIS Forum - architectural genius: "daveman" - for detailed subject-by-subject discussion!
http://www.POISCenter.com/forums/index.php
Our 4-year-old POIS thread here at Naked Science Forum will also always remain open for newcomers, for general unstructured discussion, and historical research of the 10,000+ postings here since 2007.

The Learning Channel's (TLC)  feature TV presentation on POIS, featuring our member here at this forum, "Animus". It was aired on May 22, 2011. Here is a link to the file for that TV documentary, "Desperate Measures", which can be downloaded and played. The segment starts at about 12:20..
http://www.fileserve.com/file/cUtJa9R/TITLE01.mp4

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

The POIS Information Website is home to the famous POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.

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


POIS Research Studies, 2011

These 2 papers reveal Dr. Waldinger's POIS autoimmune hypothesis and suggests one possible avenue of treatment.

First POIS Research Study, 2002

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

  
Recent POIS Research Study, 2010

CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781


British Medical Journal Case Report, 2010

Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1


How to get any or all of the above 5 studies: send me or "daveman" a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and we'll send you back the PDF(s).

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, i.e., "demografx", or "daveman".


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 Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For over 4 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus over 1,000,000 page visits. Not bad for a rare malady!



SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: more than 4 years' worth of posts (over  10,000 posts!) from 200+ Forum members, and an additional 200 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
nocturnal emission POIS site:http://thenakedscientists.com/

and 740 results came up for "nocturnal emission" 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#.

[Mer]

Hello everyone!

I have some new findings today.

I am currently under an anti-depressant to decrease my libido and it has worked quite good that I don`t get any erection (during wakefulness), wet dream, and orgasmic ejaculation.

However I have noticed that from time to time the pre-ejaculatory fluid releases ( no idea why though? it happens specially in the mornings when I get up and see I have an erection) and I can see the spots on my underwear. The bad news is that I get the symptoms whenever this pre-ejaculatory fluid releases. However these symptoms are not as intense as after a real orgasm. They are less in quantity and to some extent in intensity. For example I still get a very oily skin, lots of pimples and brain fog (40-60 %) and bumps on the throat wall.

I have searched on the internet to know more about the pre-ejaculatory fluid and it turns out that the liquid mainly originates from bulbourethral gland, also called a Cowper's gland.

I strongly see a connection from this liquid and my POIS symptoms as for several times I got some portions of the symptoms even when I did not have any orgasm. I only was sexually excited and got the symptoms with no orgasmic ejaculation in my previous POIS experiences.

This time when I experienced the symptoms after the release of the pre-ejaculatory fluid I thought maybe there is a connection between the contents of this liquid and appearance of the symptoms.

I justify the weakness of the symptoms in this case to the fact that there is less pre-ejaculatory fluid released. However, during a complete orgasm more of this liquid gets released and that might be a reason for the higher intensity symptoms after an orgasm.

Just to clarify that the symptoms could not occur due to psychological reasons- I experienced the symptoms and then became aware that the pre-ejaculatory fluid had been released by checking my underwear or going to bathroom and start urinating and observing that the urethra had been partially blocked by a liquid by the liquid which was not homogeneous to urine and thus released separately from urine.

So has anyone had the symptoms caused by the pre-ejaculatory fluid? Does anyone know if the "allergen" might be within the contents of the pre-ejaculatory fluid?

Please comment!

Thank you.

[B_Daniel]

Under the "Funding a POIS Research Grant Thread" on the POIS Center forum, I've been keeping track of everyone's announced donations and pledges.  The table of donations is stratified by Money Already Donated and Pledged Donations (pledged donations are all in excess of already given donations).  

Green just pledged a massive $500 donation, bringing the total $ figure of Pledged Donations to over $7,000!  This means that together with the $2,685 already donated, we're at almost $10,000.  

I just wanted to share below the information on those people who have donated and pledged... people just like YOU who have had enough and are serious about finding a cure!    

So thank you very, very much to all of you below.    

       MONEY DONATED TO NORD
Donor                                      Given ($)
Demografx                                250                        
Animus                                     100
EDS                                          100                    
B_Daniel                                    500                    
Rock27                                      1,000
Martin88                                    100                          
Hoping                                       unspecified
John21                                      100                                    
Habibou                                     100  
7/11/11 ACTUAL NORD TOTAL   $2,685

                   PLEDGED
Donor                                     Pledged ($)
Demografx                                unspecified
Limejuice                                  1,000
Rock27                                     unspecified
Vandemolen3                            unspecified
EDS                                          900
B_Daniel                                    4,500        
Habibou                                     unspecified                  
Counterpoints                             unspecified
jivetalk                                    100   
Green                                       500
Atleast $7,000 more!

(if I've missed you please send me a PM)

[jivetalk]

2nd Niacin Pills Report:

Okay decided to O again for the Team this afternoon. This time, I upped my Dosage of Niacin. I have stopped taking the pills on a daily basis as per Davemans suggestion (Thanks Daveman. So anyway - About 45 minutes prior, I took 3 x 100mg tablets, then about 15 minutes prior I took another 2 x 100mg. Definately had the Niacin Flush during the 'deed'.

Results:

OMG - I feel fine. In fact I feel really good. I seem to have a lot more energy. Seems to have kicked me out of the POIS that I had yesterday also. Very Very minor signs of brain fog - I feel I could sit down and have a good conversation with someone, which is very rare for me after O. Am pretty excited about this so thought I'd write on the forum. Of course this still could be Placebo, or one of those rare times that an O kicks me out of POIS. I am still cautiously optimistic. Will keep experimenting and reporting.

P.S- I am not sure about the long term effects of Niacin, I am tempted to up my dosage - but Probably won't until I research Niacin a bit more and what ill effects it might have.

[silverandcol]

Nice jivetalk, very nice.  I can't wait till my xanthinol comes now!  Been like over a week and nothing ><. 

[mellivora]

Hi Everyone,

Apologies as usual for my sporadic appearance on the forum. I see there has been lots of recent activity I need to catch up with here! Well done.

I've been asked once again by Dr Goldmeier to shout out to any POIS sufferers in the UK. He's an author of one of the few scientific papers on POIS and is trying to conduct more research. He's widely published in medical journals and is based at St Mary's Hospital in London and Imperial College. He's part of a unit that conducts clinical research in sexual medicine.  He and his team really need more POIS sufferers to come forward and see him.

Dr Goldmeier is very approachable, and you can refer yourself to his clinic at St Mary's Hospital in London, there's no need to get your GP to do it for you. Just send him an email at:

David.Goldmeier@imperial.nhs.uk

What's more it doesn't cost you anything to go and see him (except for your travel to London). Its an amazing opportunity to get POIS thoroughly investigated. If Dr Waldinger has 45 or more POIS patients in the Netherlands (as suggested by his last POIS research paper), its hard to believe that there aren't at least that many sufferers willing to come forward in the UK.  Dr Goldmeier is willing to see any UK POIS patients and I think so far he's seen about 8. Simply get in touch with him by email.

Dr Goldmeier and his team seem willing and able to look at POIS from all angles including investigating any immunological connections as suggested by Dr Waldinger. Even an fMRI study, something many forum members here have called for, seems to be a possibility if he can get enough POIS sufferers to see him. So if you're in the UK, and haven't yet got in touch with Dr Goldmeier, please take a step forward for your own sake and for the rest of us in tackling this illness that's affected us all so badly.

I see there is much activity with NORD which is fantastic. I'll catch up with that. We need to pursue every avenue in getting this investigated.

[jivetalk]

Demo and Daveman,

Was thinking about POIS research...I was hoping to humbly suggest two things.

1. I was looking at the Poiscenter forum,- And thinking to myself, if I was someone who had POIS didn't really know anything about it and found myself at either of the two forums - There is nothing that easily introduces newcomers into our group. For example a 'What is POIS?', 'Do I have POIS?' and a 'FAQ'..that is easily found from the front page would help a lot of people when they land at the new forum. There is a lot of medical speak and theories which is the core of what we are about at the moment, but I was thinking it would be good to help people who know nothing ease into it...

2. Continuing on the Awareness path - and once item one has been done. I was thinking of drafting an email, one that clearly identifies POIS symptoms, with the intention of advising the existance of the Poiscenter forum and the NORD Grant. and mass mailing it out, to health forums. to people we know. asking them to pass it on in the hopes of identifying more sufferers.

Thoughts?

[jivetalk]

Mellivora,

That is great news! I only wish I was in the UK.
Thanks for bringing this to the forum, and I am very glad we have another medical professional looking into this.

[hurray]

I have searched on the internet to know more about the pre-ejaculatory fluid and it turns out that the liquid mainly originates from bulbourethral gland, also called a Cowper's gland.

I strongly see a connection from this liquid and my POIS symptoms as for several times I got some portions of the symptoms even when I did not have any orgasm. I only was sexually excited and got the symptoms with no orgasmic ejaculation in my previous POIS experiences.

This time when I experienced the symptoms after the release of the pre-ejaculatory fluid I thought maybe there is a connection between the contents of this liquid and appearance of the symptoms.

I justify the weakness of the symptoms in this case to the fact that there is less pre-ejaculatory fluid released. However, during a complete orgasm more of this liquid gets released and that might be a reason for the higher intensity symptoms after an orgasm.

I also get POIS symptoms from pre-ejaculatory fluid Mer - a minority of people on this forum have the same problem as we do. Semen is made up of many different "ingredients", including sperm, pre-cum and a bunch of other things (fructose, various acids, zinc etc).

So according to the theory which says that POIS suffers are allergic to their own semen, we could be allergic to any number of the components of semen, from one or two to all of them.

Different people are allergic to different things, so our "precum POIS" is just as real as full-blown "ejaculation POIS". When (eventually) medical science breaks semen down into all its different elements and finds out which parts cause POIS, I'm betting that precum will be one of the biggest troublemakers.

Of course that doesn't mean that we are not allergic to sperm as well as precum! Or fructose, citrate, phosphorylcholine, or some of the many other components of semen.

[hurray]

Results:

OMG - I feel fine. In fact I feel really good. I seem to have a lot more energy. Seems to have kicked me out of the POIS that I had yesterday also. Very Very minor signs of brain fog - I feel I could sit down and have a good conversation with someone, which is very rare for me after O. Am pretty excited about this so thought I'd write on the forum. Of course this still could be Placebo, or one of those rare times that an O kicks me out of POIS. I am still cautiously optimistic. Will keep experimenting and reporting.

P.S- I am not sure about the long term effects of Niacin, I am tempted to up my dosage - but Probably won't until I research Niacin a bit more and what ill effects it might have.

Very exciting news jivetalk! It would be awesome if high-dose niacin turned out to be a cure for POIS for at least some of the people on the forum. Having googled about niacin a bit, the main issue people mention is that high-dose niacin has the potential to cause damage to the liver. So if you are contemplating taking large quantities, swing by your local doctor and tell him about your plans. Even if your doctor is sceptical about POIS, it is his/her professional duty to give you a liver function test if you ask for one - whether you are drinking a bottle of whisky every day or taking high-dose niacin  []

Some sites mention that taking niacin and alcohol together has the potential to harm your liver - I need to look further into this, as I enjoy alcohol and sex, and would rather not be forced to give one of them up!

[victor.kons]

Hi All,

I've tried injection of 1% Niacin acid instead of XN today, the dose was 1ml. The initial feelings of this drug activity was that it is not as strong as XN and it takes more time to have the flush. The flush was a bit less strong as well I think. I had an O in 25 mins after injection.

Looks like Niacin Acid actions the same as XN for me, but I need twice the dose of XN or even a bit more, to have the same effect. Anyways - no POIS after 1ml dose of niacin acid - this is the result for now. But my experiment was not absolutely clean, because I had XN injection yesterday, so I need to try for a while Niacin Acid to be sure. Will keep you updated.

Warning! Don't try this on yourself without consultation of qualified medical personnel, you can make yourself permanent injury.

Victor

[B_Daniel]

Demo and Daveman,

Was thinking about POIS research...I was hoping to humbly suggest two things.

1. I was looking at the Poiscenter forum,- And thinking to myself, if I was someone who had POIS didn't really know anything about it and found myself at either of the two forums - There is nothing that easily introduces newcomers into our group. For example a 'What is POIS?', 'Do I have POIS?' and a 'FAQ'..that is easily found from the front page would help a lot of people when they land at the new forum. There is a lot of medical speak and theories which is the core of what we are about at the moment, but I was thinking it would be good to help people who know nothing ease into it...

I personally think that's a fantastic idea.  I can remember just a few months ago when I first found NSF.  Every night I read posting after posting, but it took so long to get caught up.  I just wanted to Yell "Please somebody give me the Cliff Notes on all this" - and I think that's exactly what we need. 

So, jivetalk as you said, we need a packet (Perhaps found under POIS center) that begins with a) what is POIS b) how do I know if I have it.  Then it needs to have c) Background information on the NSF and POIS Center groups, how we all came together, why we're here, a short daveman/demo bio, etc.  d) Short 1-4 sentence summary on each of the main hypothetical POIS causes (allergy, hormonal, regeneration, circulation...) e) list of main treatments, what % of ppl found help through them, how much to take / when to take f) Discussion of the few Doctors that are researching POIS and their studies so far g) What we're doing now (continuing with NSF, POIS Center, NORD donation fund, Waldinger's study that's going on right now, note to start keeping up with the posting's to find out the rest) h) Miscellaneous - to include: How to  search the forum with google, link to Animus's video, link to the POIS Forum Compendium, a link to B_Jim's Summary of all cases, a link to Girlwind's POIS video, a link to our POIS chatroom, a link to our POIS information website, etc.

This would be a large undertaking.  We would need people to Volunteer to do one Letter of the above, and then another volunteer to get everything emailed to them, to proofread, and compile all of this into a Word Doc, then to Paste it into a new thread titled "Introduction" on the POIS Center website. 

Then Demo's Welcome Posting on NSF can simply be a big Hello and a link to this Introduction Thread.

It's a lot of work, I know.

[daveman]

Nice jivetalk, very nice.  I can't wait till my xanthinol comes now!  Been like over a week and nothing ><. 

Well, jivetalks tests are very encouraging. It might even be that JUST nicacin, when taken correctly (and maybe not like the rest of the world takes it, avoiding the flush) can work quite well, avoiding having to inject and find a special source etc....

Time and testing will tell.

[daveman]

ANOTHER MAJOR MILESTONE HAS BEEN ACHIEVED FOR POIS!

Dear Friends,

We are thrilled to announce that POIS is now officially recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research, in the US!!

Go to: http://rarediseases.info.nih.gov/RareDiseaseList.aspx?StartsWith=P, then scroll down until you reach Postorgasmic illness syndrome.

NIH maintains THE LIST of the almost 7,000 rare disorders that have been identified to date.  Getting POIS added to that list brings us one step closer to diagnosis, finding the cause, and most importantly – finding the treatments that will alleviate the miserable condition! 

With strong encouragement and support from NORD, we approached the Office of Rare Disease Research (ORDR) via emails, citing the few studies about POIS to date. We were met with immediate understanding and compassion, and after several weeks, they concluded that it was correct to list POIS on their official list of rare diseases.

Some of you might think that this is only a list – but we know from NORD that this particular list is frequently used by scientists, universities, pharmaceutical companies, and even venture capitalalists who are seeking to either obtain funding – or to fund – rare disease research.

We are slowly but surely making progress.  The time for serious attention to POIS has arrived!

Don’t forget, your donations are happily received at:
http://rarediseases.org/about/support/research-donations/fg_base_view_p3

With these donations, professional investigators will work at puting all the pieces together and get rid of this thing for once and for all!!

POIS Forums,
Demografx, Daveman

[mellivora]

Daveman, that's terrific. I've had blank looks from doctors in the past after they have looked up POIS on a computer database of illnesses to find it wasn't there. I'm sure it'll make a difference.

[lauracostis]

Hi Everyone,

Apologies as usual for my sporadic appearance on the forum. I see there has been lots of recent activity I need to catch up with here! Well done.

I've been asked once again by Dr Goldmeier to shout out to any POIS sufferers in the UK. He's an author of one of the few scientific papers on POIS and is trying to conduct more research. He's widely published in medical journals and is based at St Mary's Hospital in London and Imperial College. He's part of a unit that conducts clinical research in sexual medicine.  He and his team really need more POIS sufferers to come forward and see him.

Dr Goldmeier is very approachable, and you can refer yourself to his clinic at St Mary's Hospital in London, there's no need to get your GP to do it for you. Just send him an email at:

David.Goldmeier@imperial.nhs.uk

What's more it doesn't cost you anything to go and see him (except for your travel to London). Its an amazing opportunity to get POIS thoroughly investigated. If Dr Waldinger has 45 or more POIS patients in the Netherlands (as suggested by his last POIS research paper), its hard to believe that there aren't at least that many sufferers willing to come forward in the UK.  Dr Goldmeier is willing to see any UK POIS patients and I think so far he's seen about 8. Simply get in touch with him by email.

Dr Goldmeier and his team seem willing and able to look at POIS from all angles including investigating any immunological connections as suggested by Dr Waldinger. Even an fMRI study, something many forum members here have called for, seems to be a possibility if he can get enough POIS sufferers to see him. So if you're in the UK, and haven't yet got in touch with Dr Goldmeier, please take a step forward for your own sake and for the rest of us in tackling this illness that's affected us all so badly.

I see there is much activity with NORD which is fantastic. I'll catch up with that. We need to pursue every avenue in getting this investigated.

This sounds like a great opportunity for patients in the UK which will also benefit all of us.

[CertainlyPOIS]

Daveman, that's terrific. I've had blank looks from doctors in the past after they have looked up POIS on a computer database of illnesses to find it wasn't there. I'm sure it'll make a difference.

Nice i guess we can all say to past doctor who is crazy now

[demografx]

Results:

OMG - I feel fine. In fact I feel really good. I seem to have a lot more energy. Seems to have kicked me out of the POIS that I had yesterday also. Very Very minor signs of brain fog - I feel I could sit down and have a good conversation with someone, which is very rare for me after O. Am pretty excited about this so thought I'd write on the forum. Of course this still could be Placebo, or one of those rare times that an O kicks me out of POIS. I am still cautiously optimistic. Will keep experimenting and reporting.

P.S- I am not sure about the long term effects of Niacin, I am tempted to up my dosage - but Probably won't until I research Niacin a bit more and what ill effects it might have.

Very exciting news jivetalk! It would be awesome if high-dose niacin turned out to be a cure for POIS for at least some of the people on the forum. Having googled about niacin a bit, the main issue people mention is that high-dose niacin has the potential to cause damage to the liver. So if you are contemplating taking large quantities, swing by your local doctor and tell him about your plans. Even if your doctor is sceptical about POIS, it is his/her professional duty to give you a liver function test if you ask for one - whether you are drinking a bottle of whisky every day or taking high-dose niacin  []

Some sites mention that taking niacin and alcohol together has the potential to harm your liver - I need to look further into this, as I enjoy alcohol and sex, and would rather not be forced to give one of them up!

Thanks, guys!

(edit - red emphasis mine)

[B_Daniel]

Daveman, that's terrific. I've had blank looks from doctors in the past after they have looked up POIS on a computer database of illnesses to find it wasn't there. I'm sure it'll make a difference.

YA!  I can't wait to tell my next disbelieving doctor to "Look It Up, Buddy".... although maybe i'll be a bit nicer than that about it. 

Good work in getting this accomplished!