[Counterpoints]

Hi Richard,
Thanks for your post.  You can find a questionnaire developed to organize information about this condition, at http://pois.olympe-network.com

Please do not be quick to generalize all of our problems.  "Our chronic fatigue syndrome" is not an accurate description.  It is not obvious that this problem is a manifestation of CFS.  For some people there may be a relation, but for others there definitely is not.  For instance, as B_Jim mentioned, one sufferer was found to have Adrenocortical carcinoma.

[demografx]

Hi, Richardgrear, welcome to The POIS thread of the Naked Science Forum.

Some resources for you:

Please see "B_Jim"'s POIS Forum Summary of All Cases, here as well as others on the Web. MessageID: 149009
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video. A first!

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/

We look forward to more of your posts!

[pyropeach]

Richardgrear, welcome.  You've definitely found the right place.

[demografx]

Richardgrear, you may also wish to get a copy of the first study done on this malady/illness called POIS. More details below.

Then bring it to your doctor. We have had the same problem as you with medical credibility: most doctors don't understand our condition.

Many of us see POIS' problem as hormonal, so you may think of seeing a local endocrinologist (which I am doing). The co-author of the paper below is an endocrinologist.

Other Forum members here have other ideas of the "best" medical practitioner to see, e.g., naturopaths. You will see that by searching the posts.


POIS Research Study

The first and only study on POIS by Dr. Marcel Waldinger,MD and Dr. David Schweitzer, MD.

If you want a copy (PDF), send "Pyropeach" a Private Message with your email address and he'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 the recipient's name, e.g., "pyropeach".

[artosophy]

Ah man.. Thanks guys.

I hope you don't mind, but I sent an email to the CFIDS association of America. It went as follows:

There are a number of people including myself, who seem to be suffering from a form of CFIDS (or CFS) that is exacerbated by orgasms. After an orgasm, we experience physical and mental exhaustion lasting for days, and even weeks. This disorder seems to be widely unknown, even more unknown than typical CFS. It has had one study done of it. It was as follows:
 Postorgasmic Illness Syndrome: Two Cases
Authors: Waldinger, Marcel D.1; Schweitzer, Dave H.2

Source: Journal of Sex and Marital Therapy, Volume 28, Number 3, 1 May 2002 , pp. 251-255(5)

Publisher: Routledge, part of the Taylor & Francis Group

It is my desire that what me and my fellow sufferes have (what Dr. Marcel D. Waldinger has labeled P.O.I.S (Post Orgasmic Illness Syndrome)), be recognized as a sub type of CFS, and be researched as a part of the general study of CFS. Below is a link to the only forum discussing P.O.I.S., whose posts are from those few known people who suffer from it, including myself. newbielink:http://www.thenakedscientists.com/forum/index.php?topic=6576.0 [nonactive]

Thank you, Richard Grear

I may be wrong about the whole CFS thing, but I figured it couldn't hurt to send them that message.

Anyways, I'll definitely check out those links. I'm going to seem my doctor soon, and I'm in need of some sort of credible evidence for the existence of POIS, like a copy of a study done about it, so that my doctor takes me seriously. So thanks again for the links. Its good to be part of the group

[demografx]

[POIS] seems to be a form of Chronic Fatigue Syndrome [CFS].

Richard, there is no evidence of that.

We have already learned, for example, that many POIS sufferers have no fatigue symptoms.

Keep in mind that we have had 100+ POIS sufferers posting here, so our knowledge base goes far beyond Dr. Waldinger's original 2 patients studied in depth. And in 5 years, Dr. Waldinger only observed 5 cases, including the 2 that were written up.

[demografx]

I sent an email to the CFIDS association of America.

Richard, we have been working very hard to get the right publicity and studies done. Would greatly appreciate your touching base with me next time before sending a letter on behalf of the group. Thank you very much for your good intentions.

[rock27]

My doctor subscribed me an SSRI (can't remember which one though) when I told him I had post orgasmic illness, because he thought I was depressed. I took it for about 4 weeks, only to make me very tired. And I had no libido at all (I always have libido, except in POIS). I didn't try orgasm as far as I can remember.

Another note: nocturnal orgasms. I wanted to get more testing done, but these nocturnal orgasms keep interfering for the last 2 months. Any ideas how to get rid of them? I tried lying on my side, but didn't work. My natural healer gave me herbs that made me feel very tired this week (main component: ostreae concha), so quit them and looking for something else. Thanks.   

[demografx]

I sense that perhaps you are cautious of my pro-chastity/ anti-lust tack, as you know it is founded in my faith, which you reject. Am I right?

I don't reject your pro-chastity/anti-lust tack or faith in the least! And if you meant to ask if I reject it for myself, that's just too complicated to answer in full, but suffice it to say that I have abandoned the concept of organized religion...for myself only. I have respect and admiration for all faiths if they are practiced for the betterment of mankind, as long as specific tenets are not pushed on me.

My "caution" recently comes from another forum member who insists that abstinence is a powder-keg of a subject and should be avoided. And maybe it is explosive. But since the subject of abstinence is inextricably intertwined with POIS, I don't see how to avoid it.

I'm just your garden variety sexual human who has tried, and failed, at "permanent" abstinence. So, being human, I tend to generalize: if I have limits (mine surface at 6 weeks) on what appears to be a natural human desire, so must others. To my way of thinking, that could be 2 days or 20 years but not "forever".

We all know that we can find hundreds of studies to back up almost any conclusion, no matter how preposterous! (My career background is in the research industry). And so I realize that I could be dead wrong in my assumptions about the effect of "permanent" abstinence on others' psyches and physical health.

[artosophy]

have there been any other studies of POIS? besides the first one? (sorry to interrupt)

[demografx]

My doctor subscribed me an SSRI (can't remember which one though) when I told him I had post orgasmic illness, because he thought I was depressed. I took it for about 4 weeks, only to make me very tired. And I had no libido at all (I always have libido, except in POIS). I didn't try orgasm as far as I can remember.

Another note: nocturnal orgasms. I wanted to get more testing done, but these nocturnal orgasms keep interfering for the last 2 months. Any ideas how to get rid of them? I tried lying on my side, but didn't work. My natural healer gave me herbs that made me feel very tired this week (main component: ostreae concha), so quit them and looking for something else. Thanks.   

Rock, I recall some discussion of that, so maybe the forum post search results below can help you find something:
http://www.google.com/search?hl=en&q=nocturnal+emission+NE+site%3Ahttp%3A%2F%2Fthenakedscientists.com&aq=f&oq=

[demografx]

have there been any other studies of POIS? besides the first one? (sorry to interrupt)

Not formal studies to my knowledge. But if you click at the top here to Page 1, you'll see snippets of case studies. B_Jim also has more information about outside cases that is in the first link of 3 that I mentioned in my welcome message above.

[martin88]

Hi to all the newcomers! Each time someone new posts here is an additional case. Thanks.
As seen on other forums I feel that a chart with recommendations, would be appropriate to avoid the excessive censure that occured these days. Since pois is impairing judgment of all of us, it's always possible for posters to make errors. Personally I feel that censure is definitely necessary but should be kept private.

[martin88]

I'll be out of the immediate subject:
For all people who will decide to take a testosterone treatment, and it's important to mention, except those who are involved in bra's competition  []:

This is not the point :
- Androderm can causes gynecomastia.
From some sources it's most likely with injectable or oral treatments which is encouraging in a way, but gynecomastia is mentionned as a common effect in this site which is used by my MD :  https://online.epocrates.com/u/10a2016/Androderm

- Testosterone: conversion to estrogen- estrogen peak in older men.
Source: http://emedicine.medscape.com/article/120858-overview
Estrogen production in males results mainly from the peripheral conversion of androgens (testosterone and androstenedione) — through the action of the enzyme aromatase, mainly in muscle, skin, and adipose tissue — to estradiol and estrone.
The third peak [estrogen] occurs in older men, with a prevalence of 24-65%. Gynecomastia in adults is often multifactorial. Increased aromatization of testosterone to estradiol and the gradual decrease of testosterone production in the aging testes most often account for gynecomastia in adult males. Older men are also more likely to take medications associated with gynecomastia than are younger men.

-Here is my problem:
Higher estrogen levels in older men are associated with an increased risk for dementia
Source: http://www.medscape.com/viewarticle/541420

I shouldn't have to repeat this but remember this is an external view, since I'm not MD I admit I can be wrong.

[underwater]

Anybody else having problems posting?

[demografx]

Anybody else having problems posting?

Testing advertising, so all kinds of system probs.

[underwater]

Serotonin & Gaba--
Pro has mentioned that Zoloft has worked for him in the past. For me, Benzodiazepines have worked in the past. Perhaps these medications that boost Serotonin and Gaba indicate or suggest that the increase of certain inhibitory neurotransmitters may help diminish POIS symptoms in individuals who have anxiety conditions. The problem is that these are powerful meds., and for me haven't shown significant, long lasting results. I don't like them. But I'd sure like to know how to build up serotonin and gaba naturally. Right now I'm just experimenting with amino acids; basic health store supplement.

I think this post won't get erased---Let's see???

[John21 (OP)]

We all know that we can find hundreds of studies to back up almost any conclusion, no matter how preposterous! (My career background is in the research industry).

Ain't that the truth, I don't doubt that even the studies can be subject to bias. Truth can be slippery.

And so I realize that I could be dead wrong in my assumptions about the effect of "permanent" abstinence on others' psyches and physical health.

Admirable open mindedness   []


I like Martin's idea, a general guide for forum decorum.

Welcome all newbies.

[underwater]

Artosophy--
Isn't it great to discover fellow sufferers? This forum will make you feel better, even if it's just a little, tiny bit. Every nugget helps. This is an optimistic bandwagon. Its synergy is definitely bigger than its individual parts.

I salute you for your perseverence. I had an absolutely terrible time in my mid 20's-
But I came out of it. Now I'm coming out of another lousy 20 months.

Excellent, compassionate members here and a very conscientious moderator. Good Luck.

[demografx]

Hey guys reporting on alpha 20c
I had a seriously unwanted Full NE but I used Alpha twenty right after and also before i went back to sleep at end of day. 5g powder form.    I don't know if it is fluke or not but my symptoms have improved.
No brain fog
Extreme tirdeness dissapeared 
I will report on concentration tomorrow and socialization after about two weeks.
I don't  know if i am a naturally quiet person or may be i am being affected by pois, i should know in about two weeks.

Very encouraging, CCconfucius!