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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6452968 times)

Offline Animus

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« Reply #13350 on: 27/05/2011 03:11:55 »
Animus, do you see any connection between your surgery = 100% POIS-free and my TRT = 80% POIS-free?

(Keep in mind my 'mysterious' Zero-sperm-count - a mystery as to when it occurred).

Demo,
I've thought about this a little more...

One possible explanation is that we cannot efficiently or healthily produce the semen which we've lost due to ejaculation.
Once the semen is ejaculated, it may cause the body to go into semen replacement mode (I do not know if this is true). However, if it were true, and semen replacement is the issue, maybe something which helps semen replacement also helps alleviate POIS. Perhaps the Testosterone therapy for you, helps with your semen replacement.

And for me, the surgery removed my ability to produce and ejaculate semen, so my body no longer replaces it.

Not producing sperm anymore could be lessening your POIS too because you're not replacing that either.
 

Offline Vincent M

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« Reply #13351 on: 27/05/2011 04:27:39 »

Demo, personally I think your remaining 20% is most likely caused by semen and if you eliminated semen production you would eliminate that 20%. However I base that mainly on Animus's successful surgery and his case is still only one case no matter how successful it was meaning there may be a possibility it won't work for everyone with POIS....
...
...
Perhaps this means fenugreek reduces POIS by reducing sperm production. Demo, did you say you tried fenugreek? If it didn't work for you maybe it's because you weren't producing sperm at the time.


VM, thank you!

And I will try fenugreek, daveman also suggested it.

But since I have Zero-sperm now, I wonder if it could still work?

My hunch is that if you try fenugreek it will just make you tired, but maybe it'll work since there's really no way I can know at this point. But the study said fenugreek lowered testosterone in the rats, and if you have low testosterone levels already then it might hurt you rather than help. I'm beginning to suspect that my normal testosterone levels were too high, which is why my anxiety was reduced when i started taking fenugreek, but that still doesn't explain why fenugreek helps with my physical POIS pains such as joint & muscle pain and eye burning unless those pains were caused by high anxiety.

It took me about two weeks to realize that fenugreek was having a positive impact on me. Also I'm not sure if fenugreek would still work for me without the garlic & milk I take with it, but I did go about a week without fenugreek and just took garlic w/ milk and felt awful the entire week. Then merely a couple days after I began taking fenugreek again I felt a lot better (maybe 30% relief from POIS, maybe more).
 

Offline Animus

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« Reply #13352 on: 27/05/2011 07:22:29 »
VincentM, How did you come across Fenugreek? Are there any sources on the internet that explain it's medicinal use?
 

Offline Habibou

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« Reply #13353 on: 27/05/2011 10:51:48 »
Have you ever talk about increasing the semen production to see if the POIS is worst?
I saw that zinc + arginine worked for many people... i know it isn't a great test but it can make the research improve...  :D
 

Offline Nightingale

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« Reply #13354 on: 27/05/2011 11:07:27 »
From our friend, Stefanie, at NORD


Dear Demo,

Despite what initially appeared to be enthusiasm on the part of Vesselin Dimov, MD, University of Chicago, and his colleague, Againdra K. Bewtra, MD, Creighton University,  I have not heard back from either of them after Dr. Dimov contacted me.
I did make two attempts at follow-up, but to no avail.  They both have excellent credentials, but they apparently are not interested in pursuing evaluations and testing.

There are others on my growing list of researchers who may be quite interested in evaluating men from the forum. So -- it's onward and upward!  There is no turning back! :-)

I will let you know as I hear from other physicians/researchers.

In the meantime, I understand that there have been discussions about a research grant sponsored by your group.  Excellent!!!!!  I am going to be sending information to you about NORD's research grant program for rare disorders -- our program may suit your needs perfectly! :-)





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Stefanie Putkowski, RN, BSN
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Stephanie is so cool, glad to have her on our team!!
 

Offline demografx

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« Reply #13355 on: 27/05/2011 13:09:52 »

Animus, do you see any connection between your surgery = 100% POIS-free and my TRT = 80% POIS-free?

(Keep in mind my 'mysterious' Zero-sperm-count - a mystery as to when it occurred).



Demo,

I've thought about this a little more...

One possible explanation is that we cannot efficiently or healthily produce the semen which we've lost due to ejaculation.

Once the semen is ejaculated, it may cause the body to go into semen replacement mode (I do not know if this is true). However, if it were true, and semen replacement is the issue, maybe something which helps semen replacement also helps alleviate POIS. Perhaps the Testosterone therapy for you, helps with your semen replacement.

And for me, the surgery removed my ability to produce and ejaculate semen, so my body no longer replaces it.

Not producing sperm anymore could be lessening your POIS too because you're not replacing that either.



Amazing! Your considerations above go a long way to confirm my longstanding hunch that my POIS is somehow related to my semen regeneration speed: in my depth-of-POIS-agony days - for 30+ years - my regen speed was like molasses. With testosterone treatment, my regen speed is RAPID, and my POIS has been whittled down drastically!

Just my hunch.


« Last Edit: 27/05/2011 15:28:34 by demografx »
 

Offline demografx

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« Reply #13356 on: 27/05/2011 15:33:11 »

Stephanie [from NORD] is so cool, glad to have her on our team!!


Yes she is, and so am I (glad to have her)!!
« Last Edit: 27/05/2011 17:45:16 by demografx »
 

Offline demografx

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« Reply #13357 on: 27/05/2011 15:40:02 »
Quote
To the French-speaking members: is this a good or bad translation from Google?

Some mistakes but it's correct.

I've contacted Alui by MP. I've proposed to use french (or other languages )in private messages but to keep english mainly on the forum. It's a good idea to open topics on ohter languages on the Pois Center forum.


Thank you, B_Jim!
 

Offline Animus

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« Reply #13358 on: 27/05/2011 20:13:01 »

Animus, do you see any connection between your surgery = 100% POIS-free and my TRT = 80% POIS-free?

(Keep in mind my 'mysterious' Zero-sperm-count - a mystery as to when it occurred).



Demo,

I've thought about this a little more...

One possible explanation is that we cannot efficiently or healthily produce the semen which we've lost due to ejaculation.

Once the semen is ejaculated, it may cause the body to go into semen replacement mode (I do not know if this is true). However, if it were true, and semen replacement is the issue, maybe something which helps semen replacement also helps alleviate POIS. Perhaps the Testosterone therapy for you, helps with your semen replacement.

And for me, the surgery removed my ability to produce and ejaculate semen, so my body no longer replaces it.

Not producing sperm anymore could be lessening your POIS too because you're not replacing that either.



Amazing! Your considerations above go a long way to confirm my longstanding hunch that my POIS is somehow related to my semen regeneration speed: in my depth-of-POIS-agony days - for 30+ years - my regen speed was like molasses. With testosterone treatment, my regen speed is RAPID, and my POIS has been whittled down drastically!

Just my hunch.




Yes, I think putting it in terms of semen regeneration is intuitive for me too. And I think this could be a viable second theory to the auto-immune allergy theory proposed by Dr.Waldinger.

Incidentally, I'd like to send him a DVD copy of the TLC show. I noticed he has an address posted on his POIS website. Shall I try to send it there?...
 

Offline demografx

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« Reply #13359 on: 27/05/2011 20:47:15 »
Whoops, Animus, I almost forgot!! Yes, please send it there!
 

Offline Vincent M

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« Reply #13360 on: 27/05/2011 20:48:51 »
VincentM, How did you come across Fenugreek? Are there any sources on the internet that explain it's medicinal use?

I found out about fenugreek here at the nsf forum and decided to try it since there were some people here who did quite well on it. I also tried Relora for the same reason, but I think it just made me tired however I did only take it for about 4 days.

I did a quick google search and it seems there are very few studies that have been done on fenugreek, but people claim it helps with diabetes and male hairloss and makes women produce more breast milk and some other things too but I forget what they are.
 

Offline demografx

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« Reply #13361 on: 27/05/2011 22:02:08 »
Animus, it would be great if the 2 POIS physician-authors also get the DVD, Dr Goldmeier and Dr Dexter, on our Collaborator's List.

If that's  asking a lot, let me know how I can assist. Or, since they're both in London we could simply alert them to the summer TLC airing?

Thank you very much for taking care of Dr Waldinger!
 

Offline demografx

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« Reply #13362 on: 27/05/2011 22:06:36 »
Daveman, should we add our Collaborator's List to the Newcomer Welcome Post?
http://72.52.181.21/collaborator_list.php
 

Offline demografx

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« Reply #13363 on: 27/05/2011 22:07:54 »
 

Offline Wibin

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« Reply #13364 on: 27/05/2011 23:42:06 »
Hello, my name is Jamie, and I’m a male POIS sufferer. Whoa, that sounded tacky but I just had to say it out loud. :D

Much of what and how I felt after an O I attributed to POIS before even knowing about its existence. The thread here confirmed my understanding of my own reaction to stimuli. I, however, am not here to discuss about my problems, which to me are important of course  :D, but rather to add to the insights, suggestions and theories regarding POIS.

First of all, my theories as to why I have POIS, or stronger withdrawal from euphoria than people on average (after all, question is of extent of the downfall) and how some supplements/medications affect me:

•   I’m a celiac, as in gluten intolerant. I had, however, been eating gluten for the first good 22 years of my life (I’m 27 now). My reactions to gluten were very slight in nature, and the tests came back negative. After abstaining from gluten, I, however, have a strong reaction to it (prickly feeling or it actually hurts). Thus many can be gluten intolerant without even knowing it. This is important in regards to POIS because this can severely affect the absorption of the notoriously badly absorbing amino-acids. Even after going gluten-free for years. Two of the amino-acids, phenylalanine and tyrosine are the key here. So POIS sufferers may have problems creating replacements with bad absorption (for one reason or another).
•   I have been diagnosed with ADD. This was shortly after realizing connection behind POIS and orgasms. I told the doc the first time I went to his office about this. He thought nothing of it; said he had not heard of it, basically shrugging it off. But I didn’t pursue it further. This is because:
•   a. the ability to concentrate far from perfect even when abstaining for months. Thus POIS is likely not to be the underlying cause, but definitely one of the main symptoms and triggers.
b. I got what I wanted: prescription meds. Bupropion. 
•   Prolactin could be a variable here. By taking meds and supplements (mentioned below) I can correct my ADD or brain fog, but still feel uninterested. I would assume prolactine? Period not wanting to have sex coincides with POIS symptoms lasting up to a week.
•   Underlying cause being the body adjusting to higher (temporary) levels of dopamine resulting in chronic deficiency. This can be due to over masturbating or smoking when developing (teenager years).

Bupropion: this has had a tremendous effect on my ADD (attention deficit disorder). I can concentrate better and I wake up fresh instead of groggy. Also, I stay awake better during daytime and as a result I fall asleep faster. This also increasing the effects of orgasms and thus makes POIS far worse! The effect is very strong in lengthening the o, or perhaps I should say that I get multiple Os (like 3-5) in a short amount of time (15seconds -1 minute). I can tingle up to four hours afterwards. This maybe just me. However, Bupropion also gets me on the rebound faster. Typically I suffer approximately 4 days while without the med it can be up to week and a half before feeling full of energy again. Thus it is likely to have something to do with Norepinephrine or Dopamine. This is definitely the main cause of my soddy feeling, be it POIS or ADD.

My POIS symptoms are as follows:
•   Lethargy and disinterest in anything.
•   Sleepiness, grogginess, brain fog.
•   Socially disconnect, verbal impairment
•   flu-like symptoms (feverish + dry throat)
•   I feel physically sick sometimes after one hour and lasts approximately 3 hours.
•   Trying to sleep all day, but not succeeding. (mentally tired)

These are in addition to my ADD which mainly affects reading and concentrating (thus not affecting stuff you really enjoy doing or conversing with people). However, I believe ADD and POIS is the same case in my case, as with some of the other POIS sufferers no doubt. In POIS the orgasm is the trigger, causing havoc on an unbalanced system with slower than usual recovery.

What has helped with me:
Tyrosine/phenylalanine – this is a temporary fix for the sleepiness or lethargy and brain fog. However, I’m not that interested in doing anything really and become passive (or depressed to a slight degree). You have to take a lot (1000mg) and often (2-3 times a day). Acetyl-tyrosine is much more effective for me, but I may get a headache from it. The resulting dopamine also reduces the amount of prolactin that can be a factor in POIS.

DHEA and or pregnanone – this helped, but only slightly. I think I become cranky from them so I generally avoid. DHEA, however, appears to have a positive effect on social features when out of POIS (more assertive from testosterone?).

St. John’s wort – this works for what Tyrosine doesn’t work for. Generally better outlook on life but does’t really improve concentration. I take 300 mg on POIS days, and yes, it does work without having to take something like 900 mg every day for at least 3 weeks before positive effects as is the norm as anti-depressants. Taking 900 mg too late in the day will affect falling asleep, leaving me with a feeling of being “content” but buzzy (brain fog). These effects are present even when taken sporadically, and on the whole positive when treating POIS symptoms even if I can become “slower”. This is likely to be serotonin effect, so it may play a part although not the main performer in this stage.

Sam-E – it works in a similar manner to bupropion or tyrosine. I have to look into it further, but I suggest everyone trying it and reporting on it.

Amino-acids – amino-acid supplements. ALL of them. I got a large pack of Amino-acids (Now foods amino-acid complete), both essential and non-essential. Taking on the upper limits or over it does have a positive effect!  [:0]So I hope you’ll look into the amino-acid deficiency theory. Amino-acids are, after all, the building blocks for most of the chemicals created by the human body. Not only tyrosine and phenylalanine, but others too.

These are largely aligned with what others have discovered.

Some things I take for POIS without being quite sure if they work:
Ginko gilboa: Should be good.
Rhodiola rosea: I’d like feedback on this. It increases dopamine. Only take it in the mornings. And take on the upper limits! I take 1x500mg (3%) and that is at its lowest dose with some effect.
Now trying Zinc, fenugreek and PhosphatidylSerine too thanks to this forum. Especially Phosphatidyl Serine seems promising!

Some things that I feel are utter bollocks (but these are just my educated opinions with medical knowledge running within the family and my own experience of my body):
Allergy to sperm. (ok, maybe for some, but really rare)
Anything to do with semen. (women have POIS too)
Testosterone. It may help through secondary methods, but I doubt it’s a lack of testosterone. The actual problems lie elsewhere as I cannot trace the connections within the body. DHEA may indeed be effective, but that’s the nature of it as a “mother of all hormones”. I could be wrong too, but hey! After all it's a free country even in being wrong! I just find that there is too much emphasis on T in treating POIS. ???
Anything to do mental state. I read a lot that having sex with a partner is better for POIS than masturbating. This is probably more to do with moving more, breathing heavily/exercising when having actual sex. Also I find that the orgasm is of different type as you are concentrating on something different. I would even go as far as to say that the o is stronger when masturbating as you get a stronger ”flush” when you concentrate more on feeling as it happens further reinforcing the good feeling and giving a few more Os for 5-10 seconds. General gratification is of course far lower with masturbation as it is mostly just the actual O part.

I hope this is of some help to someone.
Greets & good luck!
 

Offline Kingkong

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« Reply #13365 on: 28/05/2011 01:18:19 »
Bonjour Alui, je suis un francophone du Canada, Quebec. Nous pouvons échanger sur ce forum ou autrement. à vous de me faire savoir la facon de communiquer.
 

Offline demografx

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« Reply #13366 on: 28/05/2011 01:40:21 »
From our friend, Stefanie, at NORD


Hello Demo, et al,

I'm happy to advise you that Dr. Ves Dimov, from the University of Chicago, sent an email earlier today. 

He remains interested in participating in the evaluation of men with POIS, and will be collaborating with his colleague from Creighton University in Nebraska, Dr Bewtra.

As some of you may already know, Dr. Bewtra has started an initial evaluation process.  He has done some preliminary evaluating and testing on one or two men from your group.

Dr. Nguyen, who I believe is a Fellow in Creighton's Department of Allergy and Immunology, assisted in those preliminary evaluations. He and Dr. Bewtra are planning to write a report and hopefully  present their initial findings at the upcoming ACAAI annual scientific meeting (American College of Allergy, Asthma, and Immunology).  I believe this meeting takes place in early November.

They are obviously viewing POIS seriously, and devoting behind-the-scenes time and effort to it.

(FYI, a "Fellow" is a MD in an advanced specialty training program.)

Dr. Dimov and Dr. Bewtra are highly-regarded allergists/immunologist with outstanding academic qualifications.  Their interest, and the potential submission and presentation of a report by Dr. Bewtra and his Fellow, Dr Nguyen at the ACAAI annual scientific meeting, are definitely steps in the right direction for all of you!

The wheels of research can seem painfully slow at times, but don't let that discourage you -- at all!!  Real research is worth waiting for. 

POIS is just getting its wings. :-)


Sincerely,
 
Stefanie Putkowski, RN, BSN
Clinical Information Specialist
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55 Kenosia Avenue
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Phone: 203.744.0100
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Offline demografx

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« Reply #13367 on: 28/05/2011 01:55:19 »


alui, and Wibin, 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
THIS 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


* Most recent POIS Research Studies, 2011 *

Send Dr. Waldinger an email, and he will send you the copies of both articles. At a later date, he will send you a POIS questionnaire to fill in. He gets busy, so If you do not receive a timely reply, please contact me or "daveman" and we will expedite.
His email:
prof.dr.waldinger.pois@gmail.com

Prof. dr. Marcel D. Waldinger's website:
http://www.post-orgasmic-illness-syndrome.com/en/index.html


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 3 studies: for 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.

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 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!


 

Offline demografx

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« Reply #13368 on: 28/05/2011 01:59:41 »



alui, and Wibin, 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: 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#.




 

Offline demografx

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« Reply #13369 on: 28/05/2011 02:30:45 »

XXX I have to look into it further, but I suggest everyone trying it and reporting on it.


Please refrain from making general medical recommendations over the internet without having seen a patient (even if you were a medical practitioner). Your own experience can be shared. Thanks for cooperating.
« Last Edit: 28/05/2011 06:28:23 by demografx »
 

Offline Animus

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« Reply #13370 on: 28/05/2011 03:02:09 »
Whoops, Animus, I almost forgot!! Yes, please send it there!

 ;D ;D
 

Offline Animus

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13371 on: 28/05/2011 03:04:18 »
Animus, it would be great if the 2 POIS physician-authors also get the DVD, Dr Goldmeier and Dr Dexter, on our Collaborator's List.

If that's  asking a lot, let me know how I can assist. Or, since they're both in London we could simply alert them to the summer TLC airing?

Thank you very much for taking care of Dr Waldinger!

Yes, I'd be happy to do that.
 

Offline demografx

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13372 on: 28/05/2011 06:24:39 »
Many thanks, Animus!
 

Offline Vandemolen3

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13373 on: 28/05/2011 11:58:17 »
Great news about Dr. Nguyen, Dr. Dimov and Dr. Bewtra!
 

Offline Vandemolen3

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13374 on: 28/05/2011 11:59:36 »
Yesterday I had an O. Today is day 1. And I feel better than normal. I think I have 25 % less POIS. But I don't know in how far this is the effect of injections. Because I was eroused a very long time and then I had the O. In this case there is always less seed in the sperm. That could be a reason. And the other thing is that I just came back from a holiday from Asia (lot's of vitamin D). I will try it about a week with a quick O. I will let you know. But I can't wait to get my new injection about 3 weeks.
An O. again. And again I think 25% less symptoms. Mainly less rash in my mouth and nose.
 

The Naked Scientists Forum

Post Orgasmic Illness Syndrome (POIS)
« Reply #13374 on: 28/05/2011 11:59:36 »

 

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