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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6447763 times)

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4875 on: 14/07/2009 00:11:47 »
green, welcome to the POIS thread of The Naked Science Forum!



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

Please see "B_Jim"'s POIS Forum 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:

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here. This will also enable us to work more easily with outside researchers by having more organized data available about us:
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only study on POIS by Dr. Marcel Waldinger,MD and Dr. David Schweitzer, MD.

If you want a copy (PDF), send me a Private Message with your regular email address 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 the medical world - which often shows little understanding and is sometimes skeptical of our condition - that POIS has scientific underpinnings and that POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapist community. This can help fight the immediate reaction of some: 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 for over 2 years, which has attracted over 100 POIS sufferers worldwide who have posted here, plus more than 300,000 page visits. Not bad for a rare malady!
« Last Edit: 14/07/2009 05:28:49 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4876 on: 14/07/2009 00:12:54 »
green, this post below might help you find answers easier by tailoring a Google search to this POIS forum:


SEARCH POIS FORUM WITH GOOGLE

We have an overwhelming amount of data: nearly 2 years' worth of posts from 130+ Forum members.

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

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

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

Google even provides you results with the Message# for each result. However, Message#'s do change, so look for your post "in the vicinity" of the missing#.

« Last Edit: 14/07/2009 00:18:32 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4877 on: 14/07/2009 00:31:04 »

longest I've gone [celibate] is about 6 months and everything was just seamless, no brain fog whatsoever, crystal clear thinking, heightened physical and mental well being and I had the motivation to anything I set out on


green, did you find that, during the 6 months' abstinence, you were tense/frustrated/or otherwise negatively affected by the absence of sex?
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4878 on: 14/07/2009 02:44:02 »

You can do a test to see if you're deficient in neurotransmitter


My endocrinologist is not an ultimate authority, but he does have 30 years' experience as a well-regarded practitioner, researcher, and as a professor at a major university.

He believes that neurotransmitter testing is a great idea, but that the testing methods today are unreliable.
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4879 on: 14/07/2009 14:41:05 »

You can do a test to see if you're deficient in neurotransmitter


My endocrinologist is not an ultimate authority, but he does have 30 years' experience as a well-regarded practitioner, researcher, and as a professor at a major university.

He believes that neurotransmitter testing is a great idea, but that the testing methods today are unreliable.

It depends on the method.... if we use the same fancy techniques pharmaceutical companies use to assess the efficacy of antidepressants, involving functional imaging, then that would probably work well.  Of course, this wouldn't be a typical test a physician would just order at a lab.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4880 on: 14/07/2009 15:48:59 »

You can do a test to see if you're deficient in neurotransmitter


My endocrinologist is not an ultimate authority, but he does have 30 years' experience as a well-regarded practitioner, researcher, and as a professor at a major university.

He believes that neurotransmitter testing is a great idea, but that the testing methods today are unreliable.

It depends on the method.... if we use the same fancy techniques pharmaceutical companies use to assess the efficacy of antidepressants, involving functional imaging, then that would probably work well.  Of course, this wouldn't be a typical test a physician would just order at a lab.

[Emphasis mine - demo]



I'm sure that's what my endo was talking about. Fascinating that an fMRI could accomplish that. A few others (psychiatrist, psychotherapist) I talked to lead me to believe that most mental health professionals don't believe it can be done. (Reliably)

My impression is that you know about some cutting edge techniques. But you also qualified it with "probably". Expensive too, I bet :)

Certainly not mainstream.
« Last Edit: 15/07/2009 01:26:14 by demografx »
 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4881 on: 14/07/2009 21:17:47 »

longest I've gone [celibate] is about 6 months and everything was just seamless, no brain fog whatsoever, crystal clear thinking, heightened physical and mental well being and I had the motivation to anything I set out on


green, did you find that, during the 6 months' abstinence, you were tense/frustrated/or otherwise negatively affected by the absence of sex?

To add to that, besides celibacy, did you make any lifestyle changes?
 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4882 on: 14/07/2009 21:18:30 »
It's not a infection, it's just a overgrowth in the intestine, check your stool for candida overgrowth.

What am I supposed to see from the overgrowth?
 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4883 on: 14/07/2009 21:21:12 »

I'm on day 19 of my year of celibacy.


GC, can I just make a suggestion? I have set goals like longterm celibacy, and then found crushing disappointment when I couldn't reach those goals. Which "wipes out" the real accomplishments made in that time, in my case 3 months. The "failure" prevents me from taking the next step, it just seems too paralyzing.

I've heard about this disappointment and its effects frequently from others. Which is why slogans like "one day at a time" exist.

Maybe a more modest goal, followed by another might be less devastating and less pressure to be "Superman"?, e.g., 3 months, then another 3 months, then another 3 months. Your body is used to a completely different rhythm, and the sex drive is mighty powerful!

But in any case, congratulations and maybe I'm wrong, maybe you can handle it just the way you're doing it!

No offense, but I do hope your wrong.  If orgasm and coffee brought me into this, maybe celibacy, diet and exercise can get me out
 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4884 on: 14/07/2009 21:32:32 »
Hello,

I've been doing alot of research on this for my friend and I believe alot of this is associated with neurotransmitter deficiencies. http://www.powersupplements.com/craniyums-neuro.html

Has anyone tried craniyums or 5-hpt? You can do a test to see if you're deficient in neurotransmitter and try some.
Please post if you have any results. I highly think this might be a cure but my friend won't take anything that treats insomnia, depression etc. He only takes vitamins and fish oil and thinks he can cure it by eating healthy and working out which obviously isn't working because research says that eating healthy can only do little to increase your neurotransmitters(though it really does help). http://www.powersupplements.com/craniyums-test2.pdf

To see how to balance neurotransmitters take a look here.
http://www.powersupplements.com/craniyums-less3.html

If anyone has tried craniyums and if it has helped please reply.  Also it says low magnesium can lead to decreased neurotransmitters so  vitamin B-50 or B-100 complex, vitamin C 500 mg. - 1000 mg., calcium 1000 mg. and magnesium 500 mg supplments are recommended. These all help in balancing neurotransmitters.

Can someone please try this and tell me if it works? If it works it might be better than using the other recommended treatmetns of t-patches, antidepressants, relora, etc. 

Yes, I have been taking all the B's, a vitamin C, Calcium Magnesium, and Chelated Magnesium almost always daily,  I have to say you do notice a bit of a mood "uplifting",  but I still don't believe this is neurotransmitter deficiency.  It literally feels like you are being attacked in your own head.  I have been taking fish oil too. I'd say for the past 3 weeks.  I have been celibate for over 20 days and now I feel excellent, but the only thing that really tears us down is orgasm, than the cycle begins again.  I'm pretty sure everyone here has started off by taking vitamins.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4885 on: 15/07/2009 00:38:09 »
My reply to "sophiecentaur" in the Naked Science Forum, who started a thread entitled: "Post Orgasmic Illness Syndrome: a question"


I wonder how many of the readers and contributors to that [POIS] thread  go there because they have actually suffered and how many go there because the word "orgasm" is in the title?
It just seems to go round and round in circles - much like the Moon Landing Conspiracy threads.


my reply:
"I've been there from the beginning, over two years ago, have been  moderator for almost that length, and can assure you that all who go to the POIS thread....... _suffer_ , not "suffered" past tense, and certainly no one I have ever seen goes for the titillating aspect of "orgasm". If they did, they would be ejected immediately.

I've seen your negativity before and I frankly don't understand it in any way, shape or form.

This is a chronic, debilitating, agonizing malady. And the forum "going round and round" as you say, allows newcomers the freedom to say "the same thing" because it is a (pleasant) shock for most new entrants to find that there are fellow-sufferers in a medical world which does not yet understand the physiological, mental, and emotional torture that is called POIS.

I have seen our little "round and round" make HUGE progress. Personally, I've made enormous advances, more in the last 2 years thanks to Naked Science Forum's little POIS thread than I had in the last 30+ years that ruined a good chunk of my life.

If we can help someone avoid their next 30+ years of misery, I certainly feel gratified. Just the presence of the forum gives people hope, 3 of which have expressed suicidal ideation, and are now on positive footing.

We have begun an entry in Wikipedia, created an interactive online survey research instrument, a Compendium of theories advanced and treatments attempted. We have already attracted a well-known Harvard researcher's attention (a pioneer in HIV research)and we're also on the verge of attracting some prestige medical researchers, created a YouTube video, and much more.

But the most important thing is the hope we have given to hundreds, if not thousands, of sufferers around the world.

Thank you, Naked Science Forum!"
« Last Edit: 15/07/2009 09:40:27 by demografx »
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4886 on: 15/07/2009 03:35:57 »
Demo, you can add my name for an eventual study. A lot has been said while I was out for vacation..
I'm sure this thread will continue to progress, even if it's sometimes slow I admit. Personally I'm not here for the word orgasm, but only because I'm ill and I hope I'll find a solution. It's simply the best place to be if you're a pois sufferer.
« Last Edit: 15/07/2009 03:53:34 by martin88 »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4887 on: 15/07/2009 04:56:28 »

Thank you, Martin, for those very supportive words, and welcome back!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4888 on: 15/07/2009 05:21:29 »

I'm on day 19 of my year of celibacy.


GC, can I just make a suggestion? I have set goals like longterm celibacy, and then found crushing disappointment when I couldn't reach those goals. Which "wipes out" the real accomplishments made in that time, in my case 3 months. The "failure" prevents me from taking the next step, it just seems too paralyzing.

I've heard about this disappointment and its effects frequently from others. Which is why slogans like "one day at a time" exist.

Maybe a more modest goal, followed by another might be less devastating and less pressure to be "Superman"?, e.g., 3 months, then another 3 months, then another 3 months. Your body is used to a completely different rhythm, and the sex drive is mighty powerful!

But in any case, congratulations and maybe I'm wrong, maybe you can handle it just the way you're doing it!

No offense, but I do hope you're wrong.  If orgasm and coffee brought me into this, maybe celibacy, diet and exercise can get me out.


No offense at all! I hope I'm wrong, too!

I never suggested that you couldn't make it, I was only trying to suggest just a way to not get frustrated and quit in the event of any setback.
« Last Edit: 15/07/2009 05:23:01 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4889 on: 15/07/2009 09:09:56 »
update to NSF post and reply above re POIS forum


I stand corrected.
Apologies.


Thank you very much.

and this.......


I think the thread is a good thing! I do not think just having the word orgasmic in it causes any problems.

 We are adults here in an adult forum and we can use the English language in its intended usage without it being vulgar or attracting the wrong crowds.

 Frankly I had no idea people suffered from this illness and I have found it very informative and think it is a subject which needs a voice like it  gets here, in the hopes if for no other reason but to let others suffering know that they are not alone in their sufferings!

  I WISH DEMO AND THE WHOLE THREAD THE BEST AND AM SYMPATHETIC TO THE PROBLEMS AND HURDLES THEY HAVE TO OVERCOME TO REGAIN A NORMAL SEX LIFE !   I WISH THEM ALL THE BEST!


Karen, thank you so much for your kind words!

The word "orgasmic" is part of the official syndrome labeled in the first study ever of this malady in 2002 by two internationally published Dutch physicians, Dr. Marcel Waldinger, a neuropsychiatrist,  and Dr. Dave Schwartz, an endocrinologist, called "Postorgasmic Illness Syndrome".

And Karen, you accurately pinpointed one of the prized treasures of the thread: the instant recognition of newcomers who find new partners to help solve this vicious riddle, after many lonely years, if not decades, of suffering in silence.

POIS is a rare malady and tremendously misunderstood by the medical community worldwide. Almost all sufferers have experienced severe rejection because of this.

We are very grateful to have the opportunity afforded by Naked Science Forum to help each other find a cure.

« Last Edit: 17/07/2009 18:49:20 by Karen W. »
 

Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4890 on: 15/07/2009 22:22:51 »
Demo,
I can see how an outsider might initially wonder if we aren't just a bunch of guys that like to talk about orgasm, after all if we didn't have this condition we ourselves might find it hard to believe.  The conversation does go round and round but that's what a wheel does on it's way somewhere...I am so glad we have you as a hub.

Again I reiterate that I haven't had any symptoms lately, and I can't explain why. One thing I have learned is not to proclaim what I think is helping me definitively.  I thought for sure Relora was helping me but upon stopping it I still experienced no symptoms. Jumping to conclusions like this can create misinformation for others.

I'm still wondering about the bacterial idea. I have started consuming more cultures by eating unpasteurized sauerkraut daily as well as the yogurt. It still sounds like a crazy idea, but who knows? Or maybe my system has "healed" itself by it's protection from orgasm in chastity. I could live with that reality.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4891 on: 16/07/2009 00:01:26 »

John, you realize that if you keep this up, you will truly be a living legend? Starting off the world's first presence of POIS sufferers and then miraculously self-curing with no explanation! ;D

Well, I am thrilled for you personally that you are escaping symptoms. I hope it's permanent!

Interesting what you say about chastity. I fervently hoped, many times, that my periods of abstinence would "re-train" my body and mind somehow to eventually escape POIS. Alas, it was a crushing disappointment each time that I once again experienced the full return - sometimes worse! - of that evil, vicious POIS malady. But the longest period for me ever was about 3 months. Yours has been a year? 18 months? I forgot.

John, you are also tremendously encouraging to all of us for not disappearing! It would be very easy to say, "ok, I'm symptom-free now, why rock the boat? I'll return if the problem returns."

Your questioning aloud what is happening allows us to share peeking into your process and experiencing more hope.
« Last Edit: 16/07/2009 00:03:17 by demografx »
 

Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4892 on: 16/07/2009 03:10:04 »
John, Demo's right.  Your word is encouraging and gives hope.  300+ suffers sleep better upon your continued news.

Questions:

#1 Are you still sensative to carbs?

#2 Did you cut refined sugars like counterpoints?

**Edit**
#3 What type of yogurt do you eat? :)  Does the yogurt say 'contains' live cultures or 'made with'?

There are culture suppliments that claim to replicate similar benefits to yogurt.
« Last Edit: 16/07/2009 05:08:54 by Limejuice »
 

Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4893 on: 16/07/2009 10:01:19 »
LJ, it is President's Choice brand "Pro Advantage" with "the presence of 1 billion live Howaru cultures in every 100g serving". I do eat mainly only complex carbs, but this has been the case for years, and I still consume some sugar like a little honey on toast.

Demo, I'm not sure how long my intervals have been, I'm guessing it was about 6 months between "clusters" of incidents.
 

Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4894 on: 16/07/2009 15:02:53 »
Research on Howaru shows claims of it improving digestion and strengthing immune system.

B_Jim, I wonder if carb sensativity is a result of pancreas and poor digestion.

Demo, you were never sensative to carbs yet your drastic improvement came from hormone suppliments.

Interesting. 

Also, thoughs who have been dedicated have found solutions.
« Last Edit: 16/07/2009 15:56:25 by Limejuice »
 

Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4895 on: 16/07/2009 23:16:58 »
LJ,
Quote
Also, those who have been dedicated have found solutions.

I'm sure we were all dedicated to finding the truth behind POIS long before we found any relief!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4896 on: 16/07/2009 23:30:57 »

Demo, you were never sensative to carbs yet your drastic improvement came from hormone suppliments.


LJ, is there a link between carbs and testosterone?

I CRAVE carbs in early POIS, which I indulge, and it seems to make me feel slightly better.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4897 on: 17/07/2009 02:19:14 »
NIH Office Of Rare Diseases Research (ORDR)
http://rarediseases.info.nih.gov/

Counterpoints and I discussed the letter that Counterpoints, with Martin's assistance, put together and we agreed to use that one, signed/sent by me, instead of my writing a new letter to NIH (National Institutes of Health) ORDR.

It was emailed just now, starting with an urgent appeal for contact information for us to find a suitable entity to conduct a medical study of our condition (POIS).

I will follow up with ORDR by telephone.

I also sent an email of thanks for this suggestion to my friend who is a Harvard biophysicist who did much pioneering work on HIV.
« Last Edit: 17/07/2009 08:09:56 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4898 on: 17/07/2009 02:36:08 »
American Association of Clinical Endocrinologists (AACE)
www.aace.com/

I am writing this as a reminder to myself to call the AACE President tomorrow (Friday) to follow up with our letter (Counterpoints' letter with Martin's assistance, signed/sent by me).

Posting my intention here makes it harder for me to wiggle out of the commitment. :)
« Last Edit: 17/07/2009 07:49:21 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4899 on: 17/07/2009 03:12:54 »

The National Organization for Rare Disorders (NORD)
http://www.rarediseases.org/info/about.html

There was a link to this organization at ORDR, so I just now sent them a letter as well.

Interestingly, they define a rare or "orphan" disease as one that affects fewer than 200,000 people in the United States.
 

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4899 on: 17/07/2009 03:12:54 »

 

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