[Dean93]

Hey Nick,

I recently had my cortisol levels tested, they were in range, but low. Tried a cortisol supplement and I don't feel anything. Perhaps it's not the problem, but I agree, many of the symptoms sound very similar. But, at least so far, It just hasn't worked for me.

For the record, the supplement I took wasn't prescription hydrocortisone (standard bioidentical hormone supplement), it was Isocort, a supplement that is said to contain some, albeit less, active cortisol than Rx hydrocortisone. Again, I don't feel any improvement. I don't know if that's because cortisol isn't the problem, or because the Isocort was ineffective.

Yes. I too have much stronger underarm odor and oily skin and hair. Its like some hormonal system is in overdrive.
I also have the excessive thirst that someone mentioned earlier.
I really think theres alot to go on if we could just find one or several medical scientists to do a thorough study.
I would really like to do a hormone blood panel on myself at the day before and the day after O and compare the two for clues. I just dont have the money at this time.
I also had another theory about adrenaline synthesis. Alot of
our symptoms are similar to.adrenal insuffencieny.

http://www.diagnose-me.com/cond/C17669.html [nofollow]

Anyone had adrenaline tested or tried cortisol?

[Animus]

Animus,
I am really happy that you are wanting to help our group, but I am extremely concerned that you are not representative of our problems here.  You complained of symptoms after a genital enlarging pill -- you are the only case where this is true.  Also, about 90-95% of your symptoms are unique to your case: thick coating of plaque on tongue, ejaculation of twice as much semen as usual, development of large amounts of earwax, excessive spine curvature, walking with your feet turned inwards....etc.  These could all be red herrings.

I am not saying that you can't be helped or that your case is not a real case of POIS, or that your personal symptoms do not say something about POIS at large, but I am really afraid that if you go on this program you will severely misrepresent POIS.

There are only a few *core* symptoms that people tend to have:
- FATIGUE
- COGNITIVE DYSFUNCTION (fluency of speech, difficulty focusing, remembering,... etc.)
- SEVERE NERVOUS SYSTEM DISTRESS, ANXIETY, etc.

Also, most people have had this condition since shortly after puberty.  That is a really important fact.    Also your symptom duration of 1/2 a day is not typical.

Imagine the TLC headline being 'genital enlargement pill causes excessive earwax....'  This could be a disaster for our cause!

Counterpoints:
I appreciate your points and agree that I am different in the way I got POIS, and in some of the symptoms that I had.
But I would not at all say that 90-95% of my symptoms are unique to my case. That is grossly incorrect.

I am also aware of your concern in representing this case of mine to the public. I am also concerned about the same issues that you are, and feel it is the responsibility of the interviewee to present this illness in a way that takes into consideration the overall illness and problem.

I am completely aware of the "core" symptoms and I feel it is necessary to emphasize that we all do share these core symptoms. That is the basis for this illness as it stands, and the basis for my claim of suffering from POIS.
 
I have never had a symptom duration of 1/2 a day.
My symptoms were for 3 to 7 days after orgasm depending on severity.

I had severe Fatigue, Exhaustion- which I would say is the primary thing that I suffered from. As well, I had severe Cognitive dysfunction- depression, social awkwardness- not wanting to see people. In addition I would have problems with cognitive tasks such as writing and speaking.

I also had severe "Nervous system distress" as you put it- which manifested itself in severe spinal pain along the spinal cord- which is the center of the nervous system, and episodes of blacking out and having minor seizures.

I have had a very severe case of POIS as I understand it, true there may be some variations, and I am not the typical sufferer.

[Animus]

To be honest, I am not completely comfortable sharing my story with TLC. I have concerns for my privacy.

[Counterpoints]

Hi Animus,
I know your symptoms are severe, and I sympathize with your situation.  I am also sorry for my mistake about the 1/2 day duration, I misread something you wrote earlier -- you said it takes about 1/2 a day to fully feel the symptoms.  And it is great that you want to help, I genuinely appreciate it.  I am just sincerely concerned that you would not represent the typical POIS sufferer.  Many of your symptoms are not representative -- earwax, plaque, walking with feet turned inwards, spinal curvature, more semen volume, etc.  Also, the way you say your symptoms started is unique.  I do not want to be harsh or judgemental, I am just concerned.  I hope everyone can discuss their concerns openly.

I do not live in the US so I am not a candidate for TLC.  But I join you in encouraging as many people as possible to consider it and at least talk to Lindsay.

[kristy]

Hello all

I found this forum about a week ago and it feels like a huge weight has been lifted off my shoulders.

I've been suffering from POIS (if it is that) for over ten years, not knowing anything about it or the term it's self up until I found this thread and spent some (alot) of time reading through the posts, I had read of sexual exhaustion about 6 weeks ago but until then I saw no correlation between my sexual activities and my problems.

Up until around 7 months ago the symptoms came and went regulary with varying degree's of severity (I had no idea what was causing them), when I was really bad I'd go to the Doctor have bloods taken, be examined etc etc and would always be given a clean bill of health, they would then tell me to come back to them if the symptoms persist but they would always fade away gradually and flair up at a later date.

Thinking back after reading about this condition everything seems to fall into place and starts to make sense, I havent felt 'right' in my head (or physicaly) since I was about 17.

My symptoms comprise of

Depression
Anxiety  
Lack of motivation
Difficulty thinking
Unsociable
Quite introverted
Severe muscle tremors all over from the soles of my feet up to my eyelids
Legs burning
Testicular pains/aching
Pains in penis, enlarged veins in gland
Shooting pains in Anus
Painfull urination
Pains either side of Groin
Kidneys aching
Lower back pain rising gradually and dulling midway up my spine  
Enlarged Lymph nodes in my neck and groin (been enlarged in my neck since I was 17 dont know about groin)
Severe aching in neck where the glands are enlarged  
Occasional high blood pressure
Various joint pains
Diahorea
Headaches

I may have missed some from the above but can't think of anything else at the moment.

After finding information about the condition I have not had an 'o' for 3 days and many of the symptoms have alleviated slightly others have stopped completely Diahorea and headaches for example.

Anyway, beggining of last summer June/July time I felt worse than I ever have before and after having 2 weeks off work decided enough was enough, I went to the Doctors and insisted that some thing was wrong and needed to be investigated.

Between my Doctor and a consultant (Professor of Medicine) at the Hospital I was reffered to I have had the following procedures.

Ultrasound of a Testical - feel I need to elaborate on this one, when I was around 21 I was diagnosed with a 'Hydroseal' (Google is your friend) but it was relativley small so I left it alone rather than have an operation to correct it, my Doctor thought it prudent to have it checked again just incase anything had developed, it hadn't but I was strongly advised to have the operation so that any lumps or bumps would be easily found in the future.
I had the operation, developed a blood clot and spent a week in Hospital but thats another story.

Two chest X-Rays
Echocardiogram (ultrasound of the heart)
Ultrasound of the abdomen and neck
CT scan of chest and neck
Flexible sigmoidoscopy (5 biopsy's taken)
24 hour blood pressure monitor
2 ECG's
Many blood tests checking for Thyroid, liver, Kidney's etc

All of the above came back clear.

I don't want to sound dramatic but I got to the point where I was genuinely hoping they would find Cancer.

When I had my last consultation with the Professor at the Hospital and he told me they couldn't find anything wrong with me my heart sank I felt completely helpless, he made an appointment for me in six months if the symptoms persist!!!!!!

In all I had seen 3 different Doctors over this period two saying I had an enlarged Prostate, Liver, Glands and Kidneys the other not.

After I had been given the all clear I spent many hours on the net looking at hormone imbalances and what they can cause, I went to my Doctor and went through with him some of the things I'd found, he agreed to run a blood test on my Testosterone, Cortisol and Prolactin levels.

Cortisol and Test came back within the acceptable range, Prolactin came back as 816, the normal range is 85-315. He told me he was writing the Consultant at the Hospital to inform them and see what they want to do, I've had no letters through the post so am going to see my Doctor again next week.

Now some background info

I started doing drugs from the age of 14 (occasional Cannabis) up until around 19 when I was taking everything from Cannabis to Cocaine (would this have caused/have anything to do with the problem).
I have been going to the Gym (bodybuilding) from the age of 14, I have never taken steroids but have used legal supplements over the years including

Branch chain Amino acids
Glutamin
Creatine
Nitric Oxide
Bulgarian Tribulus

The Creatine seems to have no effect either way on my health, the Amino acids and Glutamin I feel consistantly better when taking.Initially when taking Nitric Oxide and Tribulus I would feel fantastic for maybe a week or so then they would seem to have no effect so I would stop taking them, then for the following two weeks I would feel like death warmed up.

Also if it is of any relevance the symptoms are always far worse after an 'o' but looking back they also seem to aleviate with any kind of 'natural' buzz or excitment ie I went to Alton towers early last year and whilst on the rides I felt fantactic but after a couple of minutes of it finishing I felt really bad, I just wanted to sit down and go to sleep, then Id go on another ride and again I'd feel fantastic each time feeling slightly worse afterwards.

The same with driving, I own a reasonably nippy car and in the right place at the right time like to put my foot down and whilst driving like this physically and mentaly I feel great then after a few minutes of stopping it's like my mind and body go into melt down.

Sorry for the long winded post but I wanted to give as much info as possible, no doubt I've missed off some relevant and not so relevant points but hopefully it may be some help if not to the regulars then at least to the people in my position who felt they had no where to turn to.

P.S over this time my Doctor has been insisting on me taking Amitriptyline just to see if it helps, I took it for two weeks and stopped as again for the first week yes I felt much better, second week it had no effect (I felt the same as before I started taking it) and after I stopped I felt worse than before for a couple of weeks.

PPS thanks to Demografx for sending me the PDF files

Sorry if its all a bit messy and maybe difficult to read

Regards Chris

Also does anyone know when Doctor Waldingers report is going to be published      





        

[Animus]

Hi Animus,
I know your symptoms are severe, and I sympathize with your situation.  I am also sorry for my mistake about the 1/2 day duration, I misread something you wrote earlier -- you said it takes about 1/2 a day to fully feel the symptoms.  And it is great that you want to help, I genuinely appreciate it.  I am just sincerely concerned that you would not represent the typical POIS sufferer.  Many of your symptoms are not representative -- earwax, plaque, walking with feet turned inwards, spinal curvature, more semen volume, etc.  Also, the way you say your symptoms started is unique.  I do not want to be harsh or judgemental, I am just concerned.  I hope everyone can discuss their concerns openly.

I do not live in the US so I am not a candidate for TLC.  But I join you in encouraging as many people as possible to consider it and at least talk to Lindsay.

Just to respond to your points: I believe you are picking out a few odd symptoms from an exhaustive list which I once published. I repeat: My core symptoms are the same as what defines POIS for all of us.

I see your point about finding a "typical" sufferer.  The fact that POIS usually emerges during puberty is important to note because that is when there is most growth occurring in the genitals. By taking herbal sexual stimulants, one also causes a growth spurt in the genitals. However, agreed that this is not the way most of us developed the problem. From my recollection though, not everyone here developed it at puberty either.

I would also like to see a more typical case if there is one.

[Green]

Hello all

Also does anyone know when Doctor Waldingers report is going to be published      
   

Hi Chris!

Thank you for posting your experience with POIS, it was pretty good to read your experience with this debilitating illnes. It won't be long now till there is some sort of treatment for this.

Did you manage to get someone to look into your health on the NHS or was it private?

[nick2k22]

Chris,

Your prolactin levels were higher than normal?

Nick

[Counterpoints]

I would also like to see a more typical case if there is one.

There are more typical cases and that was my point...  John21 and Demografx would be examples.  But there is no point in arguing over this. You seem to have a sense of what the common symptoms are, which is good.  Also, I don't think the onset of POIS being near puberty has as much to do with 'genital development'.  Rather, it is because they are able to achieve orgasm.

Edit: I am sorry for somewhat misrepresenting your situation in my haste to 'make things right'.

[kristy]

Hello all

Also does anyone know when Doctor Waldingers report is going to be published      
   

Hi Chris!

Thank you for posting your experience with POIS, it was pretty good to read your experience with this debilitating illnes. It won't be long now till there is some sort of treatment for this.

Did you manage to get someone to look into your health on the NHS or was it private?

Hello Green, everything was done on the NHS except a consultation and a couple of blood tests which I paid for privatly.

[kristy]

Chris,

Your prolactin levels were higher than normal?

Nick

Hello Nick

Yes my Prolactin levels were high, the report I was given states a minimum acceptable level is 85, highest acceptable level is 315 mine was at 816.

The report stated the reasons for this could be due to stress, Hyperthyroidism or an irregularity with my Pituritary gland which could be a swelling or a tumor.

My Doctor has wrote to the consultant I was intially reffered to at the Hostpital to let him know and see what/if he wants to do.

My Doctor told me he may want me to have an MRI scan on my head to investigate but to be honest with you all I think they MAY find would be a swelling of the gland which is causing the over production which MAY be down to POIS or not, I don't know.   

[Habibou]

To answer nick and everybody...
I made some blood tests, 8 hours after an O about :
-prolactine
-progesterone
-œstradiol
-LH /FSH
-testosteron
-cortisol (with and without synacthène)


+ lately = serotonine
Nothing was wrong for my case !
And to answer Zoop , ja, i know that the dopamine level sin't the only issue
i talked about it with my doctor and he said "you can have normal level of dopamine, but a dopamine dysfunction anyways!"
He said that if my dopamine level is normal, he has lot of products to balance the dopamine function
And ja, if the dopamine has dysfunction , it can "play on" others neurotransmetters also...
We will see what Doctor Waldinger says ^^ just 2 days

[nick2k22]

Thanks Chris,

That may be important.
Interestingly, prolactin is a dopamine inhibitor and the treatment for overproduction of prolactin is parkinson drugs, i.e. dopamine agonists which is in line with Habibou's post.

...sorry, you cannot view external links. To see them, please REGISTER or LOGIN

Nick

[kristy]

I just found that sebum, compound of earwax and oil of skin was stimulated by some androgens hormones (particulary progesterone) and by some pituatary hormones (STH, LPH, MSH). So this is probably due to the hormone disorder. I guess I'll by a book about hormones ans all that, there are lots of things to illuminate, I'm convinced there are a lot of answers hiden in books.
How good is it to be able to think and seek, I love fenugreek and ginseng

You just reminded me I have used Korean Ginseng in the past and felt great mentally, physical symptoms also subsided slightly though after maybe 2 weeks it stopped having any effect I then stopped taking it, the following 2 weeks were really bad and I swore I'd never use it again.

[demografx]

Hi Animus,
I know your symptoms are severe, and I sympathize with your situation.  I am also sorry for my mistake about the 1/2 day duration, I misread something you wrote earlier -- you said it takes about 1/2 a day to fully feel the symptoms.  And it is great that you want to help, I genuinely appreciate it.  I am just sincerely concerned that you would not represent the typical POIS sufferer.  Many of your symptoms are not representative -- earwax, plaque, walking with feet turned inwards, spinal curvature, more semen volume, etc.  Also, the way you say your symptoms started is unique.  I do not want to be harsh or judgemental, I am just concerned.  I hope everyone can discuss their concerns openly.

I do not live in the US so I am not a candidate for TLC.  But I join you in encouraging as many people as possible to consider it and at least talk to Lindsay.

Just to respond to your points: I believe you are picking out a few odd symptoms from an exhaustive list which I once published. I repeat: My core symptoms are the same as what defines POIS for all of us.

I see your point about finding a "typical" sufferer.  The fact that POIS usually emerges during puberty is important to note because that is when there is most growth occurring in the genitals. By taking herbal sexual stimulants, one also causes a growth spurt in the genitals. However, agreed that this is not the way most of us developed the problem. From my recollection though, not everyone here developed it at puberty either.

I would also like to see a more typical case if there is one.

Animus, many thanks for your clarification!

[demografx]

I apologize if some news about Prof. dr. Waldinger's new research is being temporarily discouraged, but he wishes to announce the news himself to us at our forum on Monday, without any potential  distortions that may be reported.

Thank you everyone very much for your cooperation!

[dbfd588]

awesome news demo.

[demografx]

Thanks Chris,

That may be important.
Interestingly, prolactin is a dopamine inhibitor and the treatment for overproduction of prolactin is parkinson drugs, i.e. dopamine agonists which is in line with Habibou's post.

...sorry, you cannot view external links. To see them, please REGISTER or LOGIN

Nick

My prolactin was sky-high, 1,000% above norm. I self-cured (with endocrinologist's blessing) from reading that same wikipedia article about hyperprolactinemia and getting off Reglan. That simple. The article states that Rx drugs are to blame in many, maybe most cases.

[kristy]

Thanks Chris,

That may be important.
Interestingly, prolactin is a dopamine inhibitor and the treatment for overproduction of prolactin is parkinson drugs, i.e. dopamine agonists which is in line with Habibou's post.

http://en.wikipedia.org/wiki/Hyperprolactinaemia [nofollow]

Nick

My prolactin was sky-high, 1,000% above norm. I self-cured (with endocrinologist's blessing) from reading that same wikipedia article about hyperprolactinemia and getting off Reglan. That simple. The article states that Rx drugs are to blame in many, maybe most cases.

Hello Demografx

Just to clarify you were taking prescribed drugs when that level was taken and then stopped to return it to normal or you were prescribed something.

Thanks 

[CertainlyPOIS]

I apologize if some news about Prof. dr. Waldinger's new research is being temporarily discouraged, but he wishes to announce the news himself to us at our forum on Monday, without any potential  distortions that may be reported.

Thank you everyone very much for your cooperation!

do you know what time that is happneing so i can get up, i love sleeping but this time around i will stay up all night starting today.

[demografx]

Thanks Chris,

That may be important.
Interestingly, prolactin is a dopamine inhibitor and the treatment for overproduction of prolactin is parkinson drugs, i.e. dopamine agonists which is in line with Habibou's post.

...sorry, you cannot view external links. To see them, please REGISTER or LOGIN

Nick

My prolactin was sky-high, 1,000% above norm. I self-cured (with endocrinologist's blessing) from reading that same wikipedia article about hyperprolactinemia and getting off Reglan. That simple. The article states that Rx drugs are to blame in many, maybe most cases.

Hello Demografx

Just to clarify you were taking prescribed drugs when that level was taken and then stopped to return it to normal or you were prescribed something.

Thanks 

Kristy, I was on Reglan for 10 years. Two years ago, when I began hormonal testing for POIS, testosterone was low, so I went on TRT and dramatically improved POIS  since then.

At the same testing time, my prolactin was sky high, and I was put through brain scans with a focus on the pituitary. The concern was that sometimes, that high a reading of prolactin could mean presence of a tumor.

Thankfully, no tumor. So that left me on my own. I read that various Rx drugs can be the culprit in hyperprolactinemia, with Reglan being named specifically. So I ditched Reglan and I was cured of hyperprolactinemia! []

[demografx]

I apologize if some news about Prof. dr. Waldinger's new research is being temporarily discouraged, but he wishes to announce the news himself to us at our forum on Monday, without any potential  distortions that may be reported.

Thank you everyone very much for your cooperation!

do you know what time that is happneing so i can get up, i love sleeping but this time around i will stay up all night starting today.

CC, it's not known, but I will ask him this weekend.

[afghan666]

hello guys,
 Am new here.my names omar.age 22.i suffer frm 24/7 fatigue.most noticable symptoms wen i wake up or sleep.
 My pois increased gradually aftr i started mastbing at 17.a few years later i frequently used bad drugs,which potentiated my symptoms.symptms are : brain fog,lethargy,guilt,mood swings,depression,a strange feeling under the skin,etc
 I hav succesfuly reduced my pois symptoms aftr many trail and error exps.best herbs that help are fenugreek,arcalion tabs,shalajeet herb,berberis artista and gingko biloba.i was prescribed xanax and arcalion when i told the dr abt my fatigue and a lil symptms of pois.xanax helps me relax and thus increases my libido bt it gives u p.e.i thnk it myt hav helpd ,please google about berberis artista's anti inflamtry props.also do check out kalonji.its the best thng for my pois.it helps reduce my pois by 50%. il b around if u hav any questions.cheers khude paman POISons.

[demografx]

afghan666, welcome to the POIS thread of The Naked Science Forum!



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


Our POIS Information Website, built by "mat780", is here:
...sorry, you cannot view external links. To see them, please REGISTER or LOGIN

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:
...sorry, you cannot view external links. To see them, please REGISTER or LOGIN

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.
...sorry, you cannot view external links. To see them, please REGISTER or LOGIN


There are a couple of ways to get any or all of the above 3 studies: (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.
...sorry, you cannot view external links. To see them, please REGISTER or LOGIN

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

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:
...sorry, you cannot view external links. To see them, please REGISTER or LOGIN

For over 3 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 nearly 1,000,000 page visits. Not bad for a rare malady!

[demografx]

afghan666, 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  10,000 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
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#.

[GoingCrazy]

I apologize if some news about Prof. dr. Waldinger's new research is being temporarily discouraged, but he wishes to announce the news himself to us at our forum on Monday, without any potential  distortions that may be reported.

Thank you everyone very much for your cooperation!

That's great news

[GoingCrazy]

Also for the TLC show.  I too believe that just being shown on TV many people will think that the person will have some sort of masturbation addiction, or something that we don't want to be wrongly perceived about this condition... because clearly long term abstinence works, but too our knowledge only until the next orgasm.  A lot of people will misjudge.  Also, if I volunteered for the show, I wouldn't want to be alone because currently I'm without a partner, and if they just interviewed me, I'd almost like to make a joke out of it because I would laugh to myself that I actually am a victim to this disease that couldn't possibly exist... but it does.  I'd probably make the show "non-serious", even though the condition is.  But.... can't wait until Monday, hopefully something good will come that day.

[Animus]

I would also like to see a more typical case if there is one.

There are more typical cases and that was my point...  John21 and Demografx would be examples.  But there is no point in arguing over this. You seem to have a sense of what the common symptoms are, which is good.  Also, I don't think the onset of POIS being near puberty has as much to do with 'genital development'.  Rather, it is because they are able to achieve orgasm.

Edit: I am sorry for somewhat misrepresenting your situation in my haste to 'make things right'.

Yes, they are more typical cases.

Also, I was able to achieve orgasm well before I ever reached puberty. I think I was masturbating as early as 4 years old. And I have heard the same is a common thing. Which actually brings up a good point about whether this should be called Post Ejaculatory Illness Syndrome!

Thank you for your apology- no offense taken!

[Counterpoints]

I would also like to see a more typical case if there is one.

There are more typical cases and that was my point...  John21 and Demografx would be examples.  But there is no point in arguing over this. You seem to have a sense of what the common symptoms are, which is good.  Also, I don't think the onset of POIS being near puberty has as much to do with 'genital development'.  Rather, it is because they are able to achieve orgasm.

Edit: I am sorry for somewhat misrepresenting your situation in my haste to 'make things right'.

I don't know about you, but I was able to achieve orgasm well before I ever reached puberty. I think I was masturbating as early as 4 years old. And I have heard the same is a common thing. Which actually brings up a good point about whether this should be called Post Ejaculatory Illness Syndrome!

Thank you for your apology- no offense taken!

This is an interesting point.  I definitely could not achieve orgasm until I was about 14, and my symptoms started shortly after -- about 6 months after.  I have heard about other cases of people being able to get orgasm when they are very young though (about 4 years old).  The huge difference in age has some interesting developmental implications.  The people who told me this were quite surprised when I told them that I was about 14 -- which I think is fairly normal.

As far as ejaculation vs orgasm... I have thought about this quite a lot.  I used to suppress ejaculation from wet dreams, in the hope that it would improve or stop symptoms from occurring.  The symptoms were still quite bad, so I concluded that (in my case) it was the neuro-chemical trigger of orgasm that was at the root of the problems.

[demografx]

Very interesting, CP!

[demografx]

I apologize if some news about Prof. dr. Waldinger's new research is being temporarily discouraged, but he wishes to announce the news himself to us at our forum on Monday, without any potential  distortions that may be reported.

Thank you everyone very much for your cooperation!

do you know what time that is happneing so i can get up, i love sleeping but this time around i will stay up all night starting today.

CC, it's not known, but I will ask him this weekend.

He just informed me that he anticipates the announcement sometime Monday morning, Dutch time.

[nick2k22]

My theories are
1>allergic reaction to something released during O
2>failure to metabolize something released after O
3>dysfunction of some hormonal pathway after O

I'm looking forward to tomorrow.

[daveman]

My theories are
1>allergic reaction to something released during O
2>failure to metabolize something released after O
3>dysfunction of some hormonal pathway after O

I'm looking forward to tomorrow.

My vote is 1 first, then 3.

[demografx]

Now where is Jimmy The Greek now that we need him? []

[Finally]

I would also like to see a more typical case if there is one.

There are more typical cases and that was my point...  John21 and Demografx would be examples.  But there is no point in arguing over this. You seem to have a sense of what the common symptoms are, which is good.  Also, I don't think the onset of POIS being near puberty has as much to do with 'genital development'.  Rather, it is because they are able to achieve orgasm.

Edit: I am sorry for somewhat misrepresenting your situation in my haste to 'make things right'.

I don't know about you, but I was able to achieve orgasm well before I ever reached puberty. I think I was masturbating as early as 4 years old. And I have heard the same is a common thing. Which actually brings up a good point about whether this should be called Post Ejaculatory Illness Syndrome!

Thank you for your apology- no offense taken!

This is an interesting point.  I definitely could not achieve orgasm until I was about 14, and my symptoms started shortly after -- about 6 months after.  I have heard about other cases of people being able to get orgasm when they are very young though (about 4 years old).  The huge difference in age has some interesting developmental implications.  The people who told me this were quite surprised when I told them that I was about 14 -- which I think is fairly normal.

As far as ejaculation vs orgasm... I have thought about this quite a lot.  I used to suppress ejaculation from wet dreams, in the hope that it would improve or stop symptoms from occurring.  The symptoms were still quite bad, so I concluded that (in my case) it was the neuro-chemical trigger of orgasm that was at the root of the problems.

Started having NEs at about 12 or 13. I do remember having flulike symptoms and a stiff neck after one
 Didn't masturbate until 14.  Pois symptoms then were mild if any.  They really began at 18.
How do you stop ejaculation in a wet dream?    I never realize it until I wake up.
and it is too late.

[Counterpoints]

My theories are
1>allergic reaction to something released during O
2>failure to metabolize something released after O
3>dysfunction of some hormonal pathway after O

I'm looking forward to tomorrow.

There could be different explanations for different variants of POIS....

[demografx]

                                                ANNOUNCEMENT OF

                                        PROF. DR. MARCEL  D. WALDINGER

                                                 January 17, 2011

Dear Members of this POIS Forum,
 
For reasons of confidentiality regarding the publication of our article and in order to get the required attention of the media, it has been necessary to maintain strict silence the last few months on the results of our research.
 
Before explaining our results, I  would like to compliment Demografx for his understanding of how things are going when an important scientific publication is at hand. And I also would like to compliment and congratulate Demografx for his impressive accomplishment to have developed this website and making it to a success. No doubt, that probably all of you, will agree with that.

Today, I publish two articles on POIS in the Journal of Sexual Medicine. The first article is about the characteristics of POIS and our hypothesis. The second article is about its treatment.

After 8 years of research, we have found that the various complaints of POIS are due to an immunological reaction of a man to his own semen. Interestingly, as long as the semen is stored in the testis there is no problem. However, as soon as the seminal fluid is released towards and into the urethra the various complaints will occur within a few minutes, and in the majority of our population of men within 30 minutes after ejaculation. But there are also men in whom the complaints start after a few hours.

Briefly, POIS  actually appears to be a systemic immune reaction that occurs only at the moment that semen is ejaculated towards or through the urethra.
 
In order to get hard evidence for this, we have performed a skinprick test with a man’s own (but very diluted) semen in his forearm. In more than the majority of men this has resulted in a positive allergic skin reaction and vague complaints of POIS.

But by saying this, I have to warn all of you. Don’t do this by yourself as a sort of experiment  with your own body without medical expertise. Own semen injection may lead to serious allergic reactions and even a (anaphylactic) shock, e.g. acute severe and life-threatening lowering of blood pressure, urging for acute medical aid. 

Skinprick testing is only safe in hands of a medical professional and with adequate equipment in case that an emergency may happen. The best approach is that a physician performs a skinprick tests with diluted semen in a well-equipped hospital.

The procedure and the results of this skinprick test is described in the first article.

After we had found this cause, we decided to treat POIS by hyposensitization treatment. Injections of diluted toxins is well known in allergy clinics and known as “hyposensitization”. In fact, treatment of POIS follows a similar procedure but instead of a diluted pollen extract we use diluted semen of the man himself.

This treatment consists of regular (weekly) injections in the skin of your own very diluted semen for a few years. By doing this the body looses its immune reaction against the semen. And yes, you have read this well, this treatment lasts a few years. It requires a lot of patience of both the patient and doctor to complete the whole injection program. 

In the second article, we have described two men who were the first to have undergone this treatment. After a few years, this treatment resulted in a significant diminishment of their complaints.

Currently, we also treat other men by hyposensitization but the results of these men are not finalized yet.

In summary, our research has shown that POIS is caused by an immunological reaction to a man’s own semen, that a skinprick test with a man’s own semen confirms this diagnosis, and that hyposensitization treatment diminishes the frequency and intensity of the complaints.

Still, we have a lot of questions about all sort of details. This is normal in science. The results of good research always raise new questions.

In recent years, I have formed a dedicated team of researchers on POIS in the Netherlands. Probably, there is no other research group in the world, that is so much focused on POIS as our team. We continue our research as I would like to find out whether it is possible to cure POIS by medication.

This is not easy, as such research costs a lot of money. Sofar, we have financed our research by our own private money, as there are no institutions that share a serious interest in POIS research. But with the publication of the current key papers on the POIS issue, showing that POIS is a real medical disorder, the odds may rise that financiers become reassured to invest in POIS research.

On the short term, I would like to investigate the characteristics of POIS around the globe since I believe that POIS is a worldwide post-ejaculatory disorder. For that purpose, I would like to send a questionnaire to all of you, and to talk to each of you personally by telephone to discuss your complaints. This will take time and patience from all of us.
 
As most of you are probably interested to read our publication, I propose the following:

If (each of) you will send me an e-mail, stating that you have read this message on the Forum, and that you are willing to fill in a questionnaire, I will send you the copies of both articles by return through email.

At a later date, I will send you the questionnaire which, after having filled in, you should send me back by e-mail.

My e-mail address is : prof.dr.waldinger.pois@gmail.com

You can also look at my website: ...sorry, you cannot view external links. To see them, please REGISTER or LOGIN  or ...sorry, you cannot view external links. To see them, please REGISTER or LOGIN

With best regards,

Prof. Dr. Marcel D. Waldinger

[Finally]

That makes sense.  It explains why sometimes the lymph nodes under my arm would become swollen the first day. 
The treatment sounds expensive and I doubt my insurance will cover it.  And how will you find somebody to do this procedure locally?

[demografx]

Thank you so much, Prof. dr. Waldinger!

[dbfd588]

I read where hyposensitization cn take up to 5 years for treatment. I wonder if that means after 5 or so years that the syndrome will be cured completely or if injections will be a life long chore? Alteast we know now what the cause is.

[dbfd588]

wow yahoo news is going crazy with this new update

[GoingCrazy]

Maybe drinking our own semen was a good idea... haha. I really hope this is the case for all of us.  But I still am confused on how a person can develop this over a period of time, and why symptoms, such as mine, only appear mentally, e.g. I don't get any bodily reactions, no flare ups, sores of anything.  Is there semen flowing through my brain when this happens?  I don't mean to appear as a skeptic or anything it just seems very confusing.

[GoingCrazy]

Still... not a skeptic,  ...sorry, you cannot view external links. To see them, please REGISTER or LOGIN

"A sperm allergy usually has no symptoms (apart from causing fertility problems in some couples). "

maybe we have the "unusual" allergy symptoms?

[CertainlyPOIS]

Maybe drinking our own semen was a good idea... haha. I really hope this is the case for all of us.  But I still am confused on how a person can develop this over a period of time, and why symptoms, such as mine, only appear mentally, e.g. I don't get any bodily reactions, no flare ups, sores of anything.  Is there semen flowing through my brain when this happens?  I don't mean to appear as a skeptic or anything it just seems very confusing.

I do agree how those the brain get connected to all these, i understand the flu reaction but not the fatigue and brain symptoms. 
And how does girlwind figure into all of these women dont make sperm.

[connor]

not sure how much i buy this. at least for my situation, i'm convinced it's more of a nuerological dysfunction that occurs having something to do with nuerotransmitters then an allergy. who knows though

[connor]

wow yahoo news is going crazy with this new update

dont know how much it makes a difference but you can vote up the story so everyone should do that here. or post it to digg reddit, etc.

[POIS-SUFFERER]

Thank you Prof. dr. Waldinger for all your hardwork and dedication to this issue.

I find it interesting and can see how this might explain my condition... but over the last few months things have gotten a bit better for me, I have been taking a lot of D3 and C, and I have dropped the brain fog for sure from my list, all the other items that most have are still there, but the brain fog seems to have lifted :-)

I will email the DR and read the papers and maybe have more to say then.

Thanks again.
PS.

[silverandcol]

Wow, Dr. Waldinger has made some serious progress.  Now the thing that remains is how to make a viable cure that can be used widespread. I hope this can happen soon as 5 years is a long time to suffer.. 

[CertainlyPOIS]

i think dbfd is talking about this.
...sorry, you cannot view external links. To see them, please REGISTER or LOGIN
how did it get out so fast and how do they know so much details.

[demografx]

I agree completely, B_Jim, that it's a great day for us, thank you!

Dr Waldinger said that my success (and 5 others here) with testosterone is not incompatible with his findings.

I think there is much greater hope now. And that doesn't necessarily mean 5 years of waiting. My last 2 years - because of this forum - have been a dramatic, wonderful improvement in my 30-year POIS agony history.

Now, I look forward to even more improvement, and with further research by Prof. dr. Waldinger.

And our road is now paved more smoothly with serious scientific medical papers that we can confidently wave in the faces of all those silly naysayers who say, "it's all in your heads" !