Post Orgasmic Illness Syndrome (POIS)

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4600 on: 15/06/2009 22:11:41 »
Update: Second day away from orgasm
I hate to report this (sort of) but I have experienced no symptoms this time, without taking anything. I am mystified. As I said I don't put faith in the Candida theory but to be precise for the record I have been eating yogurt + berries daily for about six months now. I always have included frozen blueberries and for the last couple of months I have been adding chopped frozen cranberries. I am not saying any of this is related to my lack of symptoms, I am just reporting it.

Other than diet the only other change I can think of this time is more sleep. I usually keep a regular sleep schedule, but the last few days I have allowed myself to sleep longer, to get about average 9 hrs (broken by waking once each night). Could the extra sleep be "tranquilizing" my brain? Or did Relora not actually stop my POIS symptoms after all, has something else been "working" recently? 

[???] [:-\] [???]

I would have to say sleep has little to do with POIS.  I was in college all of this last year and I would have to say that I slept 12+ hours a day, thinking that it would cure it.  But now I only get 8 and I actually feel better.

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4601 on: 15/06/2009 22:26:53 »
Update: Second day away from orgasm
I hate to report this (sort of) but I have experienced no symptoms this time, without taking anything. I am mystified. As I said I don't put faith in the Candida theory but to be precise for the record I have been eating yogurt + berries daily for about six months now. I always have included frozen blueberries and for the last couple of months I have been adding chopped frozen cranberries. I am not saying any of this is related to my lack of symptoms, I am just reporting it.

Other than diet the only other change I can think of this time is more sleep. I usually keep a regular sleep schedule, but the last few days I have allowed myself to sleep longer, to get about average 9 hrs (broken by waking once each night). Could the extra sleep be "tranquilizing" my brain? Or did Relora not actually stop my POIS symptoms after all, has something else been "working" recently? 

[???] [:-\] [???]

I would have to say sleep has little to do with POIS.  I was in college all of this last year and I would have to say that I slept 12+ hours a day, thinking that it would cure it.  But now I only get 8 and I actually feel better.

Oversleeping is rarely thought to be healthy. 

I find getting almost no sleep can exacerbate POIS.

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Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4602 on: 16/06/2009 00:37:37 »
CP,
Quote
Oversleeping is rarely thought to be healthy.

What is oversleeping? I would think that it isn't too much if you feel good afterward. If you feel bad it is too much. I used to find that I did not feel great if I slept longer, but just the last few days I have experimented and found the extra time refreshing. My night's sleep is always interrupted by typically one waking, after which I eventually fall back asleep (sleep maintenance insomnia). So, for me I think it might be a good thing, it might make up for my loss. But I do hate wasting extra time sleeping. :o)

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4603 on: 16/06/2009 01:01:51 »
Update: Second day away from orgasm
I hate to report this (sort of) but I have experienced no symptoms this time, without taking anything. I am mystified. As I said I don't put faith in the Candida theory but to be precise for the record I have been eating yogurt + berries daily for about six months now. I always have included frozen blueberries and for the last couple of months I have been adding chopped frozen cranberries. I am not saying any of this is related to my lack of symptoms, I am just reporting it.

Other than diet the only other change I can think of this time is more sleep. I usually keep a regular sleep schedule, but the last few days I have allowed myself to sleep longer, to get about average 9 hrs (broken by waking once each night). Could the extra sleep be "tranquilizing" my brain? Or did Relora not actually stop my POIS symptoms after all, has something else been "working" recently? 

[???] [:-\] [???]

I would have to say sleep has little to do with POIS.  I was in college all of this last year and I would have to say that I slept 12+ hours a day, thinking that it would cure it.  But now I only get 8 and I actually feel better.


Speak for yourself, please don't generalize. The most powerful relief I get, including my successful remedies tested over many years, and 2nd to testosterone, is from naps and sleep.
« Last Edit: 16/06/2009 02:38:06 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4604 on: 16/06/2009 01:03:52 »
CP,
Quote
Oversleeping is rarely thought to be healthy.

What is oversleeping? I would think that it isn't too much if you feel good afterward. If you feel bad it is too much. I used to find that I did not feel great if I slept longer, but just the last few days I have experimented and found the extra time refreshing. My night's sleep is always interrupted by typically one waking, after which I eventually fall back asleep (sleep maintenance insomnia). So, for me I think it might be a good thing, it might make up for my loss. But I do hate wasting extra time sleeping. :o)

I agree. I quit the guilt thing about "oversleeping". Tonight, if my body and mind need 15 hours, it needs 15 hours. Period.
« Last Edit: 16/06/2009 01:07:41 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4605 on: 16/06/2009 01:06:38 »
Demo,

Have you got a response from WHO?


Pronobis, not yet. Martin suggested a follow up. Any ideas what we can say (everyone's thoughts welcome!)? It should be extremely brief, with a copy of the previous correspondence enclosed.
« Last Edit: 16/06/2009 02:35:54 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4606 on: 16/06/2009 01:37:35 »

I should point out again that the science is really bad on this Candida explanation.  Seemingly, for the most part, "Candida" diagnosis is a scam, and the information available on the internet is unreliable.  Go to a physician (MD) [emphasis mine - demo]


I would add: Go to a reputable one [;D]


[continued from CP quote above]
and ask if you have a yeast infection.

http://ezinearticles.com/?Candidiasis-Hypersensitivity-(Systemic-Candida)-Is-It-Really-a-Fraud&id=446093

Discusses the issue, in response to Candida diagnosis being put on quackwatch's top 10 fraud list.  It says the suggested diet (Nathan Pritikin) for the most part is probably good for you anyways, so I think in that case it may be worth trying.  But there are also some things to look out for.


I think we agree: it's legitimate for a small minority of cases when true infection and obvious symptoms occur. But for a great deal of cases, it is highly suspect.




Kidding aside, if you seriously think you have an infection, by all means have it checked!
« Last Edit: 16/06/2009 02:12:34 by demografx »

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Offline POIS-SUFFERER

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4607 on: 16/06/2009 02:13:13 »
Just found this and had never read this before..... anyone else miss this....

I found it at http://forum.mesomorphosis.com/mens-health-forum/post-orgasmic-illness-syndrome-134261293.html

They did not say this is the answer.... they just found it interesting....

QUOTE:

This is called orgasmic stress (OS) induced by excessive conversion of dopamine-norepinephrine-epinephrine in the brain and adrenal glands under the sympathetic nervous function for you to achieve orgasm.
Action of Norepinephrine and Epinephrine on the sympathetic alpha receptor causes constriction of blood vessels upon orgasm. Excessive norepinephrine and epinephrine (excessive stress and anxiety) will eliminate the relaxation hormone prostaglandin E-1, resulting in tension in the rear brain, neck and shoulders where the norepinephrine and epinephrine neurons are very dense. Neck and shoulders have the densest neuro-hormone epinephrine and norepinephrine receptors in the body, followed by the urogenital areas (uterus, ovaries, vagina, clitoris, penis, testicles, and prostate), digestive tract and head skin. That is why stress, anxiety and panic can cause neck and shoulder pains and face cramp, urinary incontinence, infertility, prostate/uterine/ovarian tumors/cancers, prostate enlargement, erectile dysfunction (impotence and frigidity), digestive dysfunction, stomach cramps, and even hair loss(yes! Stress causes hair loss!). Excessive orgasm can produce Orgasmic Stress, resulting in these problems too. If you have a good blood circulation, excessive neurohormones Norepinephrine and Epinephrine can be dispersed out of the local tissues, then metabolized by the liver and expelled by the kidneys to the bladder. The un-metabolized neurohormones can also stimulate the bladder and urethral sympathetic nerves.
A low level of DHEA and androstenedione / estrogen will also cause excessive sympathetic nervous functions. Nausea is due to excessive epinephrine (sympathetic nervous functions) in the digestive systems - digestive stress.
Your body's responses to orgasmic stress out are the same as your work stress out. The difference is that the orgasmic stress occurs instantaneously upon orgasm and during sexual tension (extreme arousal), but both orgasmic and work stresses can last very long. To solve the orgasmic headache and nausea Orgasmic Stress), you have to
1. reduce the dopamine-norepinephrine-epinephrine conversion in the brain and adrenal medulla, and the epinephrine level in the bloodstream (who can do those? 5-HTP and Kava Kava!);
2. partially block the sympathetic alpha receptors;
3. increase the DHEA/androstenedione (for balancing testosterone and estrogen!) levels;
4. increase the acetylcholine and serotonin levels to modulate the sympathetic function for orgasm - de-stress the body for orgasm;
5. partially inhibit the acetylcholine re-uptaking in the synapses and power the parasympathetic nervous functions to balance the sympathetic functions that induce stress against the cardiovascular, digestive, liver, kidney and adrenal functions;
6. increase the prostaglandin E-1 (PGE-1) production in the local tissues by increasing the DHEA, acetylcholine (and its neurochemicals), and androstenedione levels;
7. Improve the local blood circulation by massage to quickly remove epinephrine and norepinephrine from the local tissues and to quickly replenish the local tissues with the nutrients, oxygen, DHEA/androstenedione and neurochemicals for the synthesis of PGE-1. Heating the local tissues can also promote the PGE-1 production to release the pulling or constriction pain. Massaging and heating on the neck and shoulders can extensively affect the PGE-1 concentration in the brain stem.
Note that Massaging and Heating the low abdomen, low back and tail bone can do the same effects on the PGE-1 production for release of the PMS or orgasmic/post-orgasmic pains or cramps in the low abdomen, low back/tailbone, and pelvic floor

PS

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4608 on: 16/06/2009 02:42:05 »

Hi everybody,

I didn't make a sex since 2 weeks, but I have POIS symptomes after 2 sleepless nights. This time I don't have flu-like symptomes, but skin problems and backache, I am pale etc.

Do you have same thing?
 

Pronobis, I have gotten POIS-like symptoms in the past from drinking alcohol and also from jet lag. Similar symptoms but different.

I think that POIS tells us that our bodies can be expected to behave strangely in other ways besides sex. Just my hunch.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4609 on: 16/06/2009 02:53:20 »

Just found this and had never read this before..... anyone else miss this....

I found it at http://forum.mesomorphosis.com/mens-health-forum/post-orgasmic-illness-syndrome-134261293.html


Yes, saw it long ago. Highly questionable/speculative. Numerous assumptions and...based on what? Not a study of POIS sufferers. Google his orgasmic stress (OS) and nothing comes up...except this post. There is a "doctor" (not an M.D.) who has written on that site and many others, and has an encyclopedia of his own speculative assumptions that he throws around. Sounds like his work. He tried to sell us here at the forum through one of his "patients".

In your Item 1 above , who wrote "(who can do those? 5-HTP and Kava Kava!)" ?
« Last Edit: 16/06/2009 03:04:21 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4610 on: 16/06/2009 03:18:58 »
Two books are available for "combatting Candida":

1. The Bible Cure for Candida and Yeast Infections

2. The Bible Cure Recipes For Overcoming Candida

Apparently, faith healers have also latched on to a promising and lucrative "malady".

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4611 on: 16/06/2009 05:15:46 »
I know candida sounds fishy and i also think that those symptoms are definately to much for one thing to be causing.
The diet  required to expell candida, is actually not a bad diet if you dont cut carbohydrate down to seriously.
I will try and see and keep trying to get my self in an endocrinologist office.

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4612 on: 16/06/2009 05:20:02 »
When i sleep for little hours out of pois something kicks in and keeps me hyper for couple hours then  i need to sleep. I dont experience full pois but i notice pois memory problems.

Am trying to test a theroy out on recovery.
I have notice sometimes my recovery are not full and i still feel sucky after a week and a half.
I have also noticed some recovery are fantastic.

I believe sleep might be the difference. 

I sleep till my body wakes up and that is usually between 8-9 hours normally. when tired definatley longer.

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4613 on: 16/06/2009 06:03:16 »
CP,
Quote
Oversleeping is rarely thought to be healthy.

What is oversleeping? I would think that it isn't too much if you feel good afterward. If you feel bad it is too much. I used to find that I did not feel great if I slept longer, but just the last few days I have experimented and found the extra time refreshing. My night's sleep is always interrupted by typically one waking, after which I eventually fall back asleep (sleep maintenance insomnia). So, for me I think it might be a good thing, it might make up for my loss. But I do hate wasting extra time sleeping. :o)

I agree. I quit the guilt thing about "oversleeping". Tonight, if my body and mind need 15 hours, it needs 15 hours. Period.

I notice when I go to bed at night my brain fog is at a minimum, but when I wake up in the morning my brain fog is the worst.  It only gets better if I get up and do something, if I stay in bed my brain fog does not go away, thats why I wake up when my brain wakes up in the morning and do not sleep in.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4614 on: 16/06/2009 06:25:18 »
I know candida sounds fishy and i also think that those symptoms are definately to much for one thing to be causing.
The diet  required to expell candida, is actually not a bad diet if you dont cut carbohydrate down to seriously.
I will try and see and keep trying to get my self in an endocrinologist office.

CC, sounds good!


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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4615 on: 16/06/2009 16:25:53 »

As long as you don't cause an "O" by yourself, I believe NE's won't really affect it.


"Harmless" NE's have been some of my most disastrous POIS episodes! NE-POIS is very common amongst us. I've heard only very few cases of POIS-free NE's.


I don't think candida diagnosis is a scam


GC, a scam is what some of us believe about the majority of cases.

You might not be in that majority. Can we just talk about you? What specific test proved that you have an infection, and what kind of infection was found? What kind of medical professional? (M.D., naturopath, etc.) How did you first learn about Candida?

Thank you.
« Last Edit: 16/06/2009 21:28:51 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4616 on: 16/06/2009 16:34:09 »

B_Jim, that was a good distinction you made: Good Sleep.

In just 10 minutes of a deep-sleep-restful-nap, my system can make tremendous recovery, moreso than even 8 hours of light sleep at night.


zzzzzzzzzzzz.............................
« Last Edit: 16/06/2009 21:28:04 by demografx »

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4617 on: 16/06/2009 18:53:36 »
CP,
Quote
Oversleeping is rarely thought to be healthy.

What is oversleeping? I would think that it isn't too much if you feel good afterward. If you feel bad it is too much. I used to find that I did not feel great if I slept longer, but just the last few days I have experimented and found the extra time refreshing. My night's sleep is always interrupted by typically one waking, after which I eventually fall back asleep (sleep maintenance insomnia). So, for me I think it might be a good thing, it might make up for my loss. But I do hate wasting extra time sleeping. :o)

I think "over-sleeping" really depends on the person, and what they get used to.  Sometimes 14 hours of sleep will be good for you, other times 30 minutes is more reasonable.  For an everyday amount, 9 hours may be the best thing for you!  (The general recommended amount is 7-8 hrs/day).


This is an article about the dangers of over-sleeping:
http://www.wellsphere.com/general-medicine-article/unhealthy-downsides-of-oversleeping/686286

I don't think it applies to you.  Also, getting the same amount of sleep every night is healthy.
« Last Edit: 16/06/2009 21:32:37 by Counterpoints »

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4618 on: 16/06/2009 20:09:19 »

As long as you don't cause an "O" by yourself, I believe NE's won't really affect it.


"Harmless" NE's have been some of my most disastrous POIS episodes! NE-POIS is very common amongst us. I've heard only very few cases of POIS - free NE's.


I don't think candida diagnosis is a scam


GC, a scam is what some of us believe about the majority of cases.

You might not be in that majority. Can we just talk about you? What specific test proved that you have an infection, and what kind of infection was found? What kind of medical professional? (M.D., naturopath, etc.) How did you first learn about Candida?

Thank you.

Just surfing the internet made me believe I have candida because I have all of the symptoms.  Than I took some acidophilus and my blurry vision fully went away.  Just that made me believe it was candida.  I'm still not applying that POIS is candida, its worth a try to go on this diet and take supplements just to make sure.

I did the internet "spit" test and it came out positive, but I'm pretty sure most people would have a positive outcome, http://www.adhdrelief.com/CandidaTest.html .  haha adhd?

Still, it's at least worth a try.  [:-\]

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4619 on: 16/06/2009 21:04:54 »

Counterpoints, that was a very interesting article on oversleeping, I bookmarked it. Not sure I agree with it all, but it has some very good points. To me, depression and backache ring a bell.

My psychiatrist-friend (he was my therapist, now retired) said that my depression (a few years back) lifted when I slept poorly because sleep-deprivation - to a point - can be an excellent antidepressant.


« Last Edit: 16/06/2009 21:26:06 by demografx »

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Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4620 on: 16/06/2009 21:52:29 »
Demo,
Quote
My psychiatrist-friend (he was my therapist, now retired) said that my depression (a few years back) lifted when I slept poorly because sleep-deprivation - to a point - can be an excellent antidepressant.

I wonder then if some types of insomnia are the body's natural defence against depression. I have noticed that I am often quicker of thought with less sleep, and likewise too much sleep results in lethargic thought.

Concerning the Downsides of Oversleeping link above, I would think that it isn't oversleeping per se that causes problems, but rather that people who have certain medical conditions tend to sleep more as they naturally need more rest.
« Last Edit: 17/06/2009 10:21:14 by John21 »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4621 on: 16/06/2009 23:11:59 »

John, I couldn't agree with you more. On every single point you just made.
« Last Edit: 17/06/2009 08:26:33 by demografx »

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Offline Langjahr

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4622 on: 17/06/2009 00:27:28 »
It's taken me 3 years just to come up with a name for what I have. I've typed in Yahoo and Google, "fatigue after sex", "headache after sex", "joint pain after sex" to no avail until today. There's a name for what I got!

I had sex last night and here are my symptoms. I have:
-Fatigue  (1-5 days)
-Sinus and facial pressure (1-3 days)
-sneezing attack (usually happens 24hrs after sex)
-joint pain (1-3 days)
- my legs and feet are hot (1-2 days
-lightheaded (3-7 days)
-brain fog (had to rewrite this 3 times) (3-7 days)
- with in 24 to 48 hrs I get a migraine that lasts 1-2 days. I use Imitrex to releive it. Took me 5 years to get the doctors to believe I had headaches. Seems as though once you describe your symptoms, they write off anything else you say.

This has been going on for 20 years! I've complained to 3 MD's and was blown off as; "the symptoms you describe are too general"

I've now read 10 pages of posts and I'm greatly relieved that I'm not nuts!!! (well, not totally)
« Last Edit: 17/06/2009 03:47:27 by Langjahr »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4623 on: 17/06/2009 01:26:41 »

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




Langjahr, don't feel too bad, I've got over 30 years of this agonizing nonsense. And, don't worry, you're as "nuts" as the rest of us, trying for decades to figure this out!

But the progress here is steady and firm. Some of us, including myself, have found significant relief.

And we continue to find progress in dealing with the medical community, which has frustrated you and the rest of us. There are many posts for you to review on this subject.

We look forward to your next post!!


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:
http://www.youtube.com/watch?v=UWBxAUC9k1g

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: 17/06/2009 01:32:19 by demografx »

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Offline NakedDynamo

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4624 on: 17/06/2009 05:20:49 »
Hi Everyone, Firstly I'd like to thank you all for setting up a place to discuss this issue openly. It has helped immensely knowning that it is a problem, and there is a community actively experiementing to solve this.

I'm from Australia and have been suffering from POIS (like most others an unknown term until now) for as long as I can remember. I've now tried Fenugreek with limited success. Can't seem to get Relora in Australia, but have paid a hefty fee to bring it in from the States (Fingers Crossed).

To the leaders of this Forum - Some Suggestions to bring this to the wider attention of the community.

1. Have we tried appealing to the Media in the US? ...or even Dr.Phil, Oprah Winfrey, The Dr's...writing to them. If we can get air time...It could lead to a lot more interest.

My suspicion is that POIS is much much more common than we might think. Like myself- I just thought it was normal, or just a result of my poor diet. By getting this out, perhaps more people will also come forward recognising this as a problem and ultimately more interest from the scientific community or drug companies.


2. I've read that perhaps funding is an issue to get some scientific research on our side. Don't know about others but I've already spent $50 USD on stuff to try. If somehow we could start up a 'fund' to collect $$ as a starting point to attract researchers to look into this issue.

That's my two cents for now - Thanks Again for this Forum.

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4625 on: 17/06/2009 06:37:28 »
I dont think tv will accept us, we dont have that kind of dramatic story to back up the situation on how it is changing life and also you cant see pois so it will be hard for them to believe and attract viewers.

I love the idea but i dont think american media will accept.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4626 on: 17/06/2009 08:15:48 »
NakedDynamo, welcome to the site! Since you came in right after my welcome note to Langjahr, I won't repeat it.

Please familiarize yourself with our resources, in the post to Langjahr directly above yours.

Since this forum started 2 years ago, we have discussed and/or followed through with many of the things you mention.

We have someone promoting us at The New York Times hoping to get coverage. We have made some other attempts, but our resources are extremely limited.

Another impediment to being more aggressive with media coverage is that most of us wish to remain anonymous.

We have concluded that our malady is very rare. Which is why it's been under-researched and which is why we get blank stares about POIS from the medical community, which mostly has never heard about this before. We have all experienced this lack of awareness, such as being referred to psychotherapists or dismissed for one lame reason or another. But we have gotten much better at working with the medical community.

We have sought funding and studies, without success so far. Again, we have very limited resources to even pursue that.

However, the progress here has been phenomenal. I have made more progress personally through the forum, in two short years - than in all the 30+ years I've suffered with POIS and visited experts around the planet and tried every trick in the book to get relief.

Please review as many of the posts as possible, and we look forward to your participation in any way that can help!

Thank you very much for all the interest you expressed.

 
« Last Edit: 17/06/2009 08:20:42 by demografx »

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Offline NakedDynamo

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4627 on: 17/06/2009 08:21:57 »
CCconfucious...Are you Kidding?

I can seen the headlines already.

A Silent debilitating condition affecting Millions of American Males and possibly hundreds of millions more around the world.

A condition that affects their ability to function properly and affecting every Aspect of their daily life. Leading to severe depression, Anti-Social behavior, Chronic Fatigue etc..

You or someone you know could have it - Suffering in Silence not knowing you or they have it. Yet the symptoms are instantly recognizable by sufferers.
 
There is a group that is actively recognizing this condition..and they are screaming for scientific validation as millions more sufferers are coming forward.......coming up NEXT on Oprah..

 [;)]

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Offline NakedDynamo

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4628 on: 17/06/2009 08:45:39 »
Demografx. No problems. I've seen many welcome notes over the pages..so all good. I feel welcome here already  [:D]

It seems there are some issues to overcome then.

1. Lack of Resources to gain Media coverage:
If someone here could write (I think all the material is already here) an article that is worthy to be published and just massively submit it to as many News sources as possible to be included. Why stop with New York Times...What about Playboy, Penthouse (where more sufferers are likely to be) Mens Health Magazines etc...Many Online news sources also...

2. More Emails to popular Medical Sites, at least referencing the condition. Maybe pointing to this site..

3. Fully commend you and everyone's efforts here on trying to go to the WHO....Fingers Crossed.

4. Rare...
I'm not entirely sure about this. Perhaps it varies a lot in people...and people don't often consult doctors about this type of condition....because they think its just normal. Myself for example had No idea it was a problem until I found this site. I was just expecting to google a solution and find it on Web MD or something - take more Iron or somethine. I think the more people know about this, the more will come forward..

In the very limited reading I have done on (Ancient) Asian Cultures, they have seemed to want to 'preserve Semen' to preserve energy. Leading to Taoist and Tantric excercises. It may be that this was an ancient way of dealing as best they could with POIS without modern science. Having said that, I read on this forum someone suggesting Acupuncture...Might have to try that.

5. Peoples desire to be anonymous

I don't think we need everyone to put their hand up to be on TV. But Just a handful of willing particpants (I read you had 300,000 new hits to this forum)..I'm sure one or two would be happy to tell their story on TV.

Just My thoughts. Would really like to see this thing sorted out for everyone here and of course myself.

 [:D]

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Offline NakedDynamo

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4629 on: 17/06/2009 08:49:08 »
B_Jim. Thanks for the Welcome!

Okay..Hey, Its Oprah. I'm allowed to exaggerate  [:D]
Seriously though...I think people don't 'Suffer' so much as just 'deal with' or 'put up' with this, thinking it's normal.

I do think there are a LOT more sufferers out there.

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Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4630 on: 17/06/2009 11:36:23 »
I am still mystified that I have experienced no symptoms this time around. Racking my brain, here are some possible reasons:

1. Dietary change (previously stated)
2. Recent Relora use (did it change something?)
3. Recent exercise change: High adrenaline/ intense cardio workout once a week
4. Sleep change (I am doubtful that this could bring total relief)
5. Unknown factor

« Last Edit: 27/06/2009 22:36:45 by John21 »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4631 on: 17/06/2009 16:21:33 »
Welcome.

Quote
Millions of American Males and possibly hundreds of millions more around the world.

[:o]  [;D] After 2-3 years of search I have only 260 testimonies of person suffering of symptoms after orgasm. Prevalence might be > 1/10 000 (pure speculation).



I had the exact same reaction to the numbers as B_Jim. I'll bet no one here has ever heard their doctor say, "Oh, yeah, I've heard of that before."

As I mentioned in my post to you, POIS is very rare.

But I'd be very happy to be proven wrong!
« Last Edit: 17/06/2009 17:35:17 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4632 on: 17/06/2009 16:23:41 »


John, this is bizarre!!! Has it ever happened to you before?

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4633 on: 17/06/2009 17:46:19 »

It seems there are some issues to overcome then.


NakedDynamo, frankly, most of our time and energy is spent helping each other here...because no one else will. That includes things that are most basic, like what kind of doctor to see, what to say, what should we test, etc.

The time and energy we have put in, so far, "outside" has not paid off, and we haven't gotten great encouragement signals.

If you'd like to help in that arena, we'd welcome it! I've already put in significant time - along with others here - and we just haven't seen the return.

I'm very familiar with marketing, publicity, advertising and the like, that was my career for decades.

We could do mass publicity fairly easily, but it would still take dollars. That subject was brought up here and we didn't get a lot of reaction. Also, someone would have to be willing to field the calls from the media and do some significant follow-thru to get our stuff placed properly. It's a job, I've done that before.

I don't wish to discourage anything. But I do want to be realistic about resources. Many thanks.

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4634 on: 17/06/2009 18:01:51 »
I am still mystified that I have experienced no symptoms this time around. Racking my brain, here are some possible reasons:

1. Dietary change (previously stated)
2. Recent Relora use (did it change something?)
3. Recent exercise change: High adrenaline/ intense cardio workout once a week (singletrack mountain biking)
4. Sleep change (I am doubtful that this could bring total relief)
5. Unknown factor



Perhaps an instance of the "good orgasm" / "bad orgasm" phenomenon?

At certain times in my life, POIS has also affected me less. I think this has been dependent on long-term healthy habits (e.g. good diet, good amount of sleep, exercise, abstinence from masturbation, sexually explicit images).
« Last Edit: 17/06/2009 18:17:08 by Counterpoints »

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4635 on: 17/06/2009 18:11:38 »
NakedDynamo,

Just to add to what Demografx said....

I think it's very possible to accurately describe POIS in a way that others would see this as an urgent condition worthy of immediate attention -- and have a more general audience interested in our experiences.  In fact, after Waldinger's paper, I believe filmmakers started to make a documentary in Europe, although something fell through (at the time -- not enough people came forward with POIS, not enough money.. ?). 

So yes, this can be done... what you're hoping for is entirely possible. 

But it's not easy.  It requires a lot of dedicated work.  We'd need to treat the project like a full-time job, and several of us would need to collaborate "full-time" for a period of months.  Even with this, we'd face a lot of rejection before we got cooperation.  (Just like a good actor would often have to make many auditions before his talent is recognized).

Are you up to it?  Are you that dedicated? Because many people come to the forum with a lot of enthusiasm for various projects (double blind testing, etc.), and are surprised we haven't done this or that. But within a week their energy fades away, and weeks later they have basically disappeared.

So yes, by all means, tell us your plans, ask for help (I'm sure many would be willing to contribute in at least small ways -- e.g. reviewing letters...), and so on.  But don't expect it to be easy.  You'll need to be really dedicated to see great results.  Setting up a timetable might be a good first step.
« Last Edit: 17/06/2009 18:45:23 by Counterpoints »

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Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4636 on: 17/06/2009 22:41:38 »
All,
I have had durations in the past when I had zero symptoms, the exception to the rule. My gut feeling is that they all had some specific thing in common. It is very annoying not knowing what that difference is!

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Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4637 on: 17/06/2009 23:02:00 »
I've experienced two new POIS symptoms over the past six months that I want to share.

- Runny nose
- Sneezing

I've never had physical POIS symptoms for 15 years.  Now I've developed two.

It feels like my body is becoming very sensative after orgasm.

By the way, this tread has become a work of art by the people/artists that have created it.  I couldn't fully express my graditude.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4638 on: 17/06/2009 23:11:14 »

NakedDynamo,

Just to add to what Demografx said....

I think it's very possible to accurately describe POIS in a way that others would see this as an urgent condition worthy of immediate attention -- and have a more general audience interested in our experiences.  In fact, after Waldinger's paper, I believe filmmakers started to make a documentary in Europe, although something fell through (at the time -- not enough people came forward with POIS, not enough money.. ?). 

So yes, this can be done... what you're hoping for is entirely possible. 

But it's not easy.  It requires a lot of dedicated work.  We'd need to treat the project like a full-time job, and several of us would need to collaborate "full-time" for a period of months.  Even with this, we'd face a lot of rejection before we got cooperation.  (Just like a good actor would often have to make many auditions before his talent is recognized).

Are you up to it?  Are you that dedicated? Because many people come to the forum with a lot of enthusiasm for various projects (double blind testing, etc.), and are surprised we haven't done this or that. But within a week their energy fades away, and weeks later they have basically disappeared.

So yes, by all means, tell us your plans, ask for help (I'm sure many would be willing to contribute in at least small ways -- e.g. reviewing letters...), and so on.  But don't expect it to be easy.  You'll need to be really dedicated to see great results.  Setting up a timetable might be a good first step.


Counterpoints, thank you very much for greatly augmenting my post to NakedDynamo!

We all want the same thing, but getting down to the nitty-gritty of action required, with many dirty laundry details, has so far escaped us.

Just to reiterate my earlier point in a different way, if I had the choice of putting my next 10 hours into forum "marketing" or helping the forum to facilitate the flow of information and medical networking, I would take the latter.

That raises the question, why not just take 2 hours out of the next 10? Well, that waters down my effort here, and it's not much time "out there" in the big bad world of competing for medical research attention with AIDS, malaria, swine flu, cancer and the like.

But I (and others I'm sure) will continue to do what we can along the lines of WHO, NY Times, university funding and research, etc.

And I'll even chip in for NakedDynamo's airfare from Australia to appear on Oprah! [;D]

« Last Edit: 20/06/2009 17:07:02 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4639 on: 17/06/2009 23:18:05 »
I've experienced two new POIS symptoms over the past six months that I want to share.

- Runny nose
- Sneezing

I've never had physical POIS symptoms for 15 years.  Now I've developed two.

It feels like my body is becoming very sensative after orgasm.

By the way, this tread has become a work of art by the people/artists that have created it.  I couldn't fully express my graditude.

Limejuice, thanks a bunch for the compliments to this forum!!

I get occasional stuffed nose on Day Zero. Wish I knew why, but a similar sensitivity has developed. In my case, it's intermittent.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4640 on: 17/06/2009 23:21:09 »

All,
I have had durations in the past when I had zero symptoms, the exception to the rule. My gut feeling is that they all had some specific thing in common. It is very annoying not knowing what that difference is!


John, this deepens the mystery. My symptoms/reactions have always appeared with clockwork precision. Counterpoints and others do share your intermittency, with sadly no explanation.

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4641 on: 17/06/2009 23:32:19 »
At some point, I think we need a compromise between "forum contributions", and making POIS more known to the world.  (Unlike Demografx), I don't think one necessarily takes priority over the other. I also think the latter (making POIS more known) contributes to the former (the forum). This is a decision each of us will have to make; and I don't think it's an "all or none" decision either.  Making POIS known is critical to our group. Any steps in this direction are incredibly appreciated.  And please let your efforts be known in advance, so that others here can contribute and comment.  It is important for this condition to be accurately characterized.
« Last Edit: 17/06/2009 23:39:14 by Counterpoints »

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4642 on: 18/06/2009 03:44:48 »
I agree we need a compromise i think we have enough people to divide, into marketing and medical. I will comment more soon.
I have a question.
I wonder if those who weigh more their symptoms last the usual 7 days
I also wonder if those who weight less recover faster.
Is there a ways i can get weight and recovery speed from every one.
Am doing this because fat affects level of testerone in body and also i noticed some recover in three days and other in 7 days.
I weigh 205 and recover in 7 days.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4643 on: 18/06/2009 04:09:56 »
185 and 3-4 days (pre-T treatment)

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4644 on: 18/06/2009 04:25:17 »
Counterpoints, we have made numerous marketing attempts over the last 2 years. Not much has happened. Are you proposing something different going forward?

To clarify my earlier post, _without_ some specific change, I don't see a return on our limited time/energy investment.

So who do you propose will do what differently?
« Last Edit: 18/06/2009 04:30:37 by demografx »

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Offline Finally

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4645 on: 18/06/2009 04:41:58 »
I agree we need a compromise i think we have enough people to divide, into marketing and medical. I will comment more soon.
I have a question.
I wonder if those who weigh more their symptoms last the usual 7 days
I also wonder if those who weight less recover faster.
Is there a ways i can get weight and recovery speed from every one.
Am doing this because fat affects level of testerone in body and also i noticed some recover in three days and other in 7 days.
I weigh 205 and recover in 7 days.

I found a link on Life Extension site: It didn't seem to work when I posted it

Go to Lef.org
Look for health concerns link and then scroll to Male Hormone Restoration. 

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4646 on: 18/06/2009 04:55:19 »
Counterpoints, we have made numerous marketing attempts over the last 2 years.  [...] I don't see a return on our limited time/energy investment.

First of all, even if we had made numerous failed attempts, it doesn't mean never to try again. We need to go beyond this forum in broadcasting POIS... that is a critical step, and we can't just give up.  In my opinion, the best thing for us would be to get this condition more researched.

But having said that, we really haven't made many attempts, and not all of the attempts have been failures.
1) We tried contacting some researchers.  We've had lukewarm success with this.  We got in touch with Waldinger, who is aware of this site, and the fact there are many people with POIS reporting their symptoms here.  You also found a good research doctor.  I was put in touch with an  MD PhD internal medicine specialist with a research interest in POIS.  Recently, I got in touch with one of the world's most renowned neuroscientists to discuss this.  I think this is an avenue we should continue to vigorously pursue..... perhaps we could write a letter that summarizes this condition, and theories, etc., and then send it out en masse to researchers?.  Or better, we could LaTeX a .pdf explanation, and then host it on olympe-network

2) There is a POIS video, which has about 2000 views, and is otherwise just good to have, in case we would like to do some kind of similar marketing.

3) Some of the recent great contacts you [Demografx] have made.

4) The letter to WHO, which we're waiting on.  We'll see what happens with that, although it may take awhile.

5) Wikipedia article.  Again, luke-warm.  There was a deletion debate, but there was also a resounding "keep" vote.  This also increased POIS awareness, and we could further use it to increase awareness, by building links to it in Wikipedia and other encyclopedias.  In the future I think this will be an asset, despite the uninteresting state of the present article.

Some publicity that we haven't generated, but which has helped us:
6) Waldinger's article
7) NYT Article

What do I propose to do differently?  Well, I think some of what we have been doing is good -- we just haven't been persistent enough.  Every time we ask someone for help, even if our letter is excellent, and we've done pretty much everything we could, there's probably less than a 10% chance we'll receive a helpful reply.  This means we'd have to send out 10 letters, to expect even 1 helpful reply.  (Assuming binomial random variables ;)).

So I think we need to be persistent.

You're right, time is limited.  I suppose the easiest thing at this stage would be to clarify some ideas that people have, and try and round them out, and organize things.  Then when we could make a list of tasks, and a rough time commitment. It would be nice to have a Mr. Anderson / Neo / "The One", who could grab the reigns and help us make some outside progress.  :D.  Like you, I'm pretty busy.  I don't have much time.


We just can't be discouraged by rejection.  That's the first step.  If you sent off a young Al Pacino to hollywood, I'm sure he'd be rejected over 100 times before finding a good role.  Demo, you've contributed to outside progress.  Don't sell yourself short! :)

Edit: .. I think you changed your question from "what do I propose to do differently?" to "who do I propose will do what differently".  Who? Anyone who wants to reach out and get POIS more known more researchers.  I suppose he should do it any way he/she wants.... although persistence will be an asset.
« Last Edit: 18/06/2009 05:14:16 by Counterpoints »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4647 on: 18/06/2009 06:24:00 »
You're right, Early Day Zero has affected me [:)]

I built a successful business (no longer involved) by getting clients with perseverance and with the assumption that for every 100 "suspects", there are only 10 real "prospects", resulting in only one (1) solid client. Those pessimistic statistics kept me grounded, realizing that the "chase" should never stop. It's a numbers game, as you say.

So let's go get 'em! 

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4648 on: 18/06/2009 06:29:44 »
I'd like to re-mail WHO. Any suggestions what to say? How about   2ND REQUEST: RSVP  , and re-play the letter showing date, time sent?

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4649 on: 18/06/2009 12:48:42 »
I'd like to re-mail WHO. Any suggestions what to say? How about   2ND REQUEST: RSVP  , and re-play the letter showing date, time sent?
I think it's too soon to re-email WHO. It was mentionned on their site to wait for months for the answer, because they have a lot of emails. Now if the precedent letter failed, I think it's not required to send an other copy. Maybe there is something discrediting our condition in it.
« Last Edit: 18/06/2009 12:51:01 by martin88 »