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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6454928 times)

Offline Jdubs

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4250 on: 06/05/2009 03:57:58 »
It won't let me post long messages
 

Offline Jdubs

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4251 on: 06/05/2009 03:58:56 »
I need Dr. Waldinger's info bad. Please PM it to me.. with his case studies.
 

Offline Jdubs

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4252 on: 06/05/2009 04:00:02 »
Hi, I've PM'd multiple people and tried posted multiple times on this forum in the POIS thread, but everything seems to error. I hope this topic actually shows up.

I don't know what's wrong, but I hope someone will send my message to Demografx ( I need the Waldinger case study from him ASAP), or willl transfer this in the POIS thread, as my multiple attempts with different computers wouldn't do anything for me.

Anyways, here's the message I intended to post in the POIS thread, in response to Demografx talking about Dr. Waldinger.

Hi Demografx,

First off, I'd like to thank you for the never-ending efforts you put into this forum and people with POIS.

I'm a 18 year old male student attending high school.. and I've recently come to realize that ever since I hit puberty, I've actually not been feeling what everyone else feels after emission. I've recently been accepted to a top university in California, but shortly after became depressed when I found out that I had the disadvantage of POIS that the other upcoming students in college will not have. I guess I've had it since a bit after puberty, but haven't really realized that nobody else in my classes feel the same way I do after emissions.

Anyway, I'll get to the nit-witty info later. I'm mainly posting here to get info about the Dr. Waldinger study of POIS. Hopefully I'll be able to use it to both motivate me and prove to people that what I feel is real. The only person I've been able to talk to is my art teacher, and I hope to dear God that I can tell my parents.

I PM'd you multiple times, but it doesn't seem to get through. If you could just e-mail me the info of Waldinger's case study, I'd give a thousand thanks.

Thanks for any help, and I hope you see this and reply as soon as possible. Again, I thank you for any info you can send me to back me up.

-JasonD
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4253 on: 06/05/2009 09:33:45 »
Hi Jason, your PM came thru fine. I think that typing an email address can be a problem in PM, so use AT instead of @. Also to be safe try dotcom instead of .com

I understand how desperate things get. Most of us do. I think there's an excellent chance for you to find  successful treatment. I hope you can find an understanding doctor. Some of us feel that an endocrinologist is best for us. One can be found by referral by your physician.

Keep in mind that none of us here are doctors. We are here to help each other by sharing our experiences, theories and treatments or experiments.

Tell us more about yourself. I have some ideas, but the "collective mind" of this forum is where the real power lies.

Best wishes and welcome to the group!
« Last Edit: 06/05/2009 09:50:09 by demografx »
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4254 on: 06/05/2009 17:54:01 »
...but shortly after became depressed when I found out that I had the disadvantage of POIS that the other upcoming students in college will not have....

I have felt this way sometimes.  But remember, many college students have disabilities -- diabetes, ADD, thyroid, etc.  You just have to work through it.  Don't half-ass your way through because you feel righteously angry about your situation. In the words of Yoda, "do or do not, there is no try". :) And I don't think giving up is ever in someone's best interests.

Also, remember that the Waldinger paper only discusses 2 patients, versus the approximately 300 people who have been discovered through this forum.  It is quite likely that Waldinger's paper does not very accurately describe your condition, because his characterization is based on very little data.  There is far more information in this thread, and in the survey, and even in the wikipedia article, than in Waldinger's paper.  Nevertheless, the Waldinger paper is definitely useful to draw attention to the problem.

And, to everyone reading, I would not expect miracles from visiting a physician.  I think seeing physicians and endocrinologists is the right thing to do (e.g. it has really helped demografx), but you can't expect the first doctor, or even the second, third, fourth, or fifth doctor to be very helpful.  This is a hard problem, and many physicians do not want the responsibility of trying to figure it out.  Your best bet, in my opinion, is to see a research endocrinologist, who has a university affiliation.  In other words, a doctor who not only does clinical practice, but who also writes research papers.  This is NOT a known condition, so some experimentation will need to be done.  Beforehand, I would try to understand the endocrine concerns that have been raised here: prolactin, cortisol, testosterone, pituitary issues, adrenal issues, thyroid etc.
« Last Edit: 06/05/2009 18:11:26 by Counterpoints »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4255 on: 06/05/2009 19:47:28 »
Counterpoints, excellent suggestion about a research endocrinologist. I'll put that in future greetings to newcomers.

Maybe one reason for my success is that I am working with a major university medical center's endocrinologist, who is also a full tenured professor with 30 years experience. And his colleague is in charge of major grant research projects. The university environment is perhaps more conducive to "new" things, like POIS.

And thanks, CP, for strengthening my private messages about the limitations of Waldinger's study. Others need to hear that as well.

Again, the primary way I see Waldinger's paper's usefulness is to establish medical credibility about POIS when we show it to family, friends or doctors. It certainly helped me with my endocrinologist (the co-author of the Waldinger study is an endocrinologist, which my endocrinologist was happy to learn).
« Last Edit: 06/05/2009 21:06:43 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4256 on: 06/05/2009 20:02:37 »
Jdubs, welcome to the POIS thread of The Naked Science Forum!




The consensus at this forum to heal your POIS, is to start with hormonal bloodtesting, preferably with a research endocrinologist. Your primary care physician can refer you to one.
 
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/


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.

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 250,000 page visits. Not bad for a rare malady!
« Last Edit: 06/05/2009 20:39:04 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4257 on: 06/05/2009 20:30:27 »

you can't expect the first doctor, or even the second, third, fourth, or fifth doctor to be very helpful.


I'm much more optimistic! I would agree with you in my case and maybe yours, in the past.

But I think that today, and going forward, we have accumulated much more data on POIS, and terrific support from many other sufferers, especially on this forum.

Also, in considering the usefulness of doctors for us today, I'm including the new sufferer's testing of experiments and treatments of others that have been reported, some successfully, such as fenugreek and relora (I think they should be brought to a doctor's attention, especially for the younger people). Add to that the testing of some of the other theories here, e.g., oxytocin, nitric oxide, Levitra, etc. There are some treatments that would need to be monitored most carefully by physicians, since they're potentially dangerous.

But, more and more, we have reason to hope for POIS treatment  success, and much more quickly than ever before, building on others' previous experiments and successes.

For example, I don't believe that I'm the only POIS sufferer in the world who will ever find relief by (1) seeing an endocrinologist, (2) testing standard hormones accurately, and (3) getting POIS relief with testosterone replacement therapy. And, in this example, there's no reason to not expect this to go smoothly and quickly for a new POIS sufferer with a case similar to mine...qualifiedly, in some cases.

But it certainly won't take 30+ years' life-wasting despair and agony like it did for me!

Part of my optimism is based on the POIS sufferer being proactive by becoming a committed student of POIS knowledge and history and to not take BS from a lazy physician. Perhaps even to take the lead with a physician in a cooperative manner. An opposite, passive approach might very well lead nowhere.

I agree that we should not expect miracles, but to say "you can't expect [even] the...5th doctor to be very helpful" is - just in my opinion, today - very discouraging and not really accurate. I do, however, respect your words of caution: it can be devastating to have our hopes raised and then to be let down and not gently. And repeatedly.

It will be different for everyone, I suspect. Call me Mr. Pollyanna :D
« Last Edit: 06/05/2009 22:33:08 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4258 on: 06/05/2009 22:17:42 »
B_Jim, my creatinine was tested high. Since it is produced in the pancreas, I wonder if that relates at all to your theory?
 

Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4259 on: 06/05/2009 22:18:11 »
Update
I have tried Relora in small amounts recently to test my tolerance for it, and it gave me a glimmer of hope. (I tried it previously but it affected me too much and I felt like I was drugged.) Last weekend I had an NE and I took the ¼ amount that I was experimenting with, along with my garlic. I took the Relora the day before and the day after, about 60mg each. (It was in a 250mg capsule so I divided up the powder and consumed it with some water.) I had no symptoms, but the really surprising thing was that I had the best sleep I have had in a long time the following night. Whereas I usually wake early and have a disturbed sleep thereafter that night was perfect. This could be a coincidence, but considering the success others here have had with Relora it may be responsible. The odd thing is that it is now over a week later and I am experiencing the “burnt out” phase that I would typically get with my POIS. For me Phase A was the deep cognitive problems (worst phase) that lasted for up to a week followed by this burnt out feeling, Phase B.  This time I experienced the B but no A. 
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4260 on: 06/05/2009 22:25:09 »
John, this sounds terrific!! I'm really sorry to hear about Phase B, but is it at least any shorter in time? Phase A lasts a week, how about Phase B?
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4261 on: 06/05/2009 22:28:32 »
I agree that we should not expect miracles, but to say "you can't expect [even] the...5th doctor to be very helpful" is - just in my opinion, today - very discouraging and not really accurate. I do, however, respect your words of caution. It will be different for everyone, I suspect. Call me Mr. Pollyanna :D

You can't expect any *individual* doctor to be particularly helpful, unfortunately; however, if you are persistent with the doctors you do see, and in seeing new doctors, I think you can expect to be helped.  Obviously in this case such persistence is worth the efforts.

My point is that if you expect too much from any one physician, you will likely set yourself up to be let down.  Generally, physicians are not going to seriously exert themselves to study a completely unknown condition.  There are a variety of reasons for this. This is even true of conditions like Cushing's disease, where a decent body of research has been conducted, and there are known treatments.  Having read through personal stories of Cushings, many sufferers are brushed off for years (and sometimes even belittled!), by one doctor after another, until he or she gets lucky and finds a physician willing to "go the extra mile" towards a rigorous examination and diagnosis.

The overall message is not to get discouraged if you see a doctor and he doesn't go out of his way to help you.  Even doctors who do not think this is psychosomatic, and have some genuine concern, may not do very much.  It is important to be extremely persistent, and to keep seeing new physicians, until you find that one who will "go the extra mile" -- one who will examine you carefully, see you more than once, consider tests that will be useful, and ultimately, have a plan of action to help you.  Generally, the physicians most receptive to studying unknown conditions, and who are willing to conduct experimental tests, and take some risks to find out what's going on, are researchers -- they publish their research in journals.  So seeing a research endocrinologist seems like the most promising option, in my opinion.   These doctors will usually be research professors at universities.

Also, I suggest while you're talking to the doctor, to make it clear that your concerns are important, and that you need a plan of action.
« Last Edit: 07/05/2009 05:49:08 by Counterpoints »
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4262 on: 06/05/2009 22:29:13 »
B_Jim, my creatinine was tested high. Since it is produced in the pancreas, I wonder if that relates at all to your theory?

Interesting that you mention this.  My creatinine has repeatedly tested high.  It's something that's usually measured in a 24 hr urine collection, for cortisol.  So that's why I've had it tested.
« Last Edit: 06/05/2009 22:41:45 by Counterpoints »
 

Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4263 on: 06/05/2009 23:20:22 »
Demo,
I'm estimating that Phase B typically lasted between 4-7 days.
« Last Edit: 07/05/2009 01:30:52 by John21 »
 

Offline Jdubs

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4264 on: 07/05/2009 00:55:52 »
Hi all,

I just wanted to add to the info that I had already put of myself here.

So a bit about myself: I love the arts. I play the tenor sax, love jazz, and love understanding culture around me. I like to create ideas. My focus at the moment is toward my major in college (becoming a freshman next year) at UCLA as a Design Media Arts major. I'm hoping that UCLA will have some cooperative staff, but I guess I can't get my hopes too high. Seeing that my main love is creating ideas and representations of the world around me, it becomes EXTREMELY frustrating when I become completely inable to create.. well.. anything.

My symptoms usually last about 48 hours(longer depending on the ejaculation or arousal thereafter). When it becomes close to the end of the 48 hours, I usually try to work out a bit and rub it off. Maybe rest a bit after the work out, and a few hours later or the next morning will be fine. My symptoms are pretty much what everyone else has already stated- dhea, heavy fatigue, some stuffy nose (congestion), inability to think creatively (or put words/actions well). I can't improv music or think of new sentences. Aches in body too. When I try working out or flex a bit, my muscles feel separate from my body and aching (I'm sure some of you must feel this too). I also tend to forget things I seemed to learn during the symptoms..or sometimes some things I learned a bit before. HEAVY sleepiness. Very inconsistent sleeping, I'd fall asleep in a few hours nap sometimes but other times can't sleep at all. Lack of emotion.. this is the most damaging of all, I feel. People will tell me jokes and I'll just look at them like, "ok..." I lose sympathy for anything. Inability to control feelings if there are any. Lots of depression.. fortunately I feel very hopeful of life after it's all over, but during it.. I feel sometimes I could kill myself within that time period I have symptoms.

That's all I remember for now.. I'll add more later.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4265 on: 07/05/2009 01:35:14 »

For me Phase A was the deep cognitive problems (worst phase) that lasted for up to a week followed by this burnt out feeling, Phase B.  This time I experienced the B but no A. 



John, 

We've got to destroy Phase B!

 :)

CONGRATULATIONS AGAIN ON "NO A"!!
« Last Edit: 07/05/2009 18:27:09 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4266 on: 07/05/2009 05:55:16 »
Jdubs,

Thanks for posting. Sounds like your POIS symptoms are close to many of ours. It's really sad to see creativity go out the window with this vicious ailment of ours.

Your emotional reaction of "ok" to a joke is so familiar to me! (and others I'm sure)It is pathetically disturbing to our well-being!

Many of us have had your cycles of post-POIS hopefulness and then, upon return of the inevitable, descended into your depths of hopelessness. I certainly have. But the consistent thing to know is DON'T GIVE UP. You have it far far better than many sufferers just by finding this place and becoming active in it. Many of us have found relief from just that activity: posting, reading, researching right here.

And the timing couldn't be better: I was in the "wilderness" for over 30 years. No one to talk to. And when I finally mustered the courage to say something, I was shot down with "blank stares" or near-ridicule. Now we have a "community" building strength, knowledge and....hope!

I somehow survived all these 30+ years by PUSHing myself to the next step. Any positive step, no matter how silly or "small". Seeing another doctor, therapist or "guru". Calling "experts" around the world. Reading. Lectures. Trying new techniques. Trying reasonable treatments. They might have all produced little, but they KEPT ME GOING. And they landed me here, finding John21's post and getting very involved on this forum.

And, incredibly, so far, my POIS treatment is working! It's a new life.

We've been here now at this forum a little over two years and the progress has been tremendous. Just ask John21 (POIS thread's very first poster!), B_Jim, Counterpoints, Martin, Guthrie, Pyropeach and other "oldtimers".

Welcome again. Glad you're here!
« Last Edit: 07/05/2009 06:52:59 by demografx »
 

Offline underwater

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4267 on: 07/05/2009 08:11:09 »
Jdubs--
You will find a cure. You're very young, and this forum will provide you with many great ideas. You will do fine at UCLA. As Counterpoints observed, there are a lot of people with other types of disabilities. You will be at home at UCLA (I know the place quite well). I credit this forum for helping me focus. I have had general anxiety disorder and POIS for a long time (I'm 60). This forum has helped me nearly wipe out my GAD in just over 6 months! HOW? Stay focused. Be positive. Keep accurate records of how you feel. I think UCLA has some good student counseling-If you still have POIS when you get there. I won't comment about my POIS, because I think we each have to find our own way. This forum will give you the best support in the world.
Just to know that you are with others who share the same difficulties is a great help.
One last thing that is hard to accept: Progress may not be linear and continuous. There will be pitfalls and regressions. But you will eventually succeed. The most difficult thing for me is to accept and work through the pitfalls as I progress.
But my accurate record keeping tells me that the long term prognosis is quite hopeful.
 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4268 on: 07/05/2009 22:38:06 »
Update
I have tried Relora in small amounts recently to test my tolerance for it, and it gave me a glimmer of hope. (I tried it previously but it affected me too much and I felt like I was drugged.) Last weekend I had an NE and I took the ¼ amount that I was experimenting with, along with my garlic. I took the Relora the day before and the day after, about 60mg each. (It was in a 250mg capsule so I divided up the powder and consumed it with some water.) I had no symptoms, but the really surprising thing was that I had the best sleep I have had in a long time the following night. Whereas I usually wake early and have a disturbed sleep thereafter that night was perfect. This could be a coincidence, but considering the success others here have had with Relora it may be responsible. The odd thing is that it is now over a week later and I am experiencing the “burnt out” phase that I would typically get with my POIS. For me Phase A was the deep cognitive problems (worst phase) that lasted for up to a week followed by this burnt out feeling, Phase B.  This time I experienced the B but no A. 

John21, I have also noticed a lot better sleep while taking relora.  The only thing I recommend is to stop taking it once you feel like it has no affect on your mood, once you feel like you achieved that "mood" while taking it I suggest to stop for a few days and still see if you need it because it will constantly make you tired.
 

Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4269 on: 08/05/2009 01:38:49 »
Goingcrazy,
After taking it for a few times 1/4 capsule doesn't have a noticable side effects, but I will keep that in mind. Thanks.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4270 on: 08/05/2009 03:37:10 »
Today, the early hours of Day Zero were a little unpleasant. Somewhat fatigued and a bit anxious. A nap broke the ice. Last few hours were almost POIS-free!

This is the way I used to feel on Day 4.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4271 on: 08/05/2009 03:52:19 »

It won't let me post long messages


Has anyone else noticed problems either with posting a Private Message or posting a message here at the forum?

If the post is lengthy, I find the Private Message "jumps back" to an earlier part of the message. I could only cut and paste into Notepad, continue typing, and then cut and paste back out to PM to make it work.

Anyway, I registered a complaint. There was a problem with this recently, assumed fixed, but maybe now it's come back.
« Last Edit: 08/05/2009 19:30:11 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4272 on: 08/05/2009 19:06:10 »
Posted last year, I thought it might be interesting to re-post this for the newcomers, for searching our previous posts on fenugreek, relora, etc.

SEARCH POIS FORUM WITH GOOGLE

I just stumbled on this. As many of you know, the POIS forum  Search function is a work in progress. Can be frustrating.

So I searched Google to see how to better Google-search our POIS Forum. Why? Because 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.

whenever I tried to use Google "as is" - without the way I described above - I would typically find only about two (2) results.

Google even provides you results with the Message# for each result.

Happy Googling!
« Last Edit: 09/05/2009 02:09:24 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4273 on: 08/05/2009 19:37:39 »
POIS DIARY


Today, the early hours of Day Zero were a little unpleasant. Somewhat fatigued and a bit anxious. A nap broke the ice. Last few hours were almost POIS-free!

This is the way I used to feel on Day 4.


A scary part of POIS is the feeling that "this will NEVER go away". I felt that again yesterday morning. In spite of DECADES of experience that the fog ALWAYS lifts eventually. And with treatment it lifts now within hours. This morning (Day One) is once again terrific, and hopefully writing that will bring hope to others.
« Last Edit: 08/05/2009 19:42:31 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4274 on: 09/05/2009 02:01:48 »
POIS THREAD NAME AS A QUESTION?

I discussed this with another mod, and according to Chris, the founder of this Naked Science Forum, it allows the internet search engines to find the information better when it's in the form of a Question. She also wrote, "Make sure Your Question kind of gives a general feel of the topic!"

Examples, "Do I have Post Orgasmic illness Syndrome (POIS)?","What is Post Orgasmic Illness Syndrome (POIS)?"

Without using a Question, we have attracted over 130 posters and nearly 300,000 page views.

Any thoughts? Let it stay? Change it?
« Last Edit: 09/05/2009 02:06:43 by demografx »
 

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Re: Post Orgasmic Illness Syndrome (POIS)
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