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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6443672 times)

Offline mrraba

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15400 on: 20/01/2012 02:16:28 »
Thank you all for the warm welcome.   

The red welcome carpet looks great!   So nice feel some aceptance after 19 years of trying to find things your own, and having pretty much given up on most doctors. 

Well, one has to be careful on what one writes real late at night! So my comment should have been:

The symptoms of CFS and POIS have a lot of similarity.   I agree that they are not the same.  I am glad for all you that do not have CFS.  It is more than enough to have POIS!  CFS feels like having a POIS episode that does not  go away. 

In any case I agree with your comments to keep an open mind about them possibly having a similar etiology.   We do not fully understand what is going on with CFS.  Maybe there is better understanding of POIS.  I hope so.  Having the combo for 19 years has been quite a learning experience believe me.  I have tried for years to find people with POIS on the net.  Before I only found a few in the CFS forums whose symptoms indicated they had CFS as well.  Was told by Dr. Goldtein a CFS expert in LA 15 years ago about a person who had "CFS like symptoms only after ejaculation".  Which seems to me may be a case of POIS.

I am open to all ideas.  I am one of the not many people with CFS who works full time.  This is thanks to years of research info on the web and me as the guinea pig.  I have closets full of all kinds of nutrional suppments I have tried over the years.   I have been very fortunate and found a diamond here and there after moving a lot of ground.    However the POIS issue has been very  elusive to me.  I am trained in design of experiments, stats, and so on and have not been able to put much of a dent on the issue with self experimenting and web infor seemed so lacking.

I am very happy to see the wealth of info you have at the bottom of the welcome email.  It is truly refreshing to find this group.

 

Offline mrraba

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15401 on: 20/01/2012 03:43:29 »
Any men with POIS after a vasectomy?  Just wondering if that helps any.  Just vasectomy.
 

Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15402 on: 20/01/2012 11:40:48 »
Any men with POIS after a vasectomy?  Just wondering if that helps any.  Just vasectomy.


There are 2 members of this forum I can think of off the top of my head who've had a vasectomy and still have POIS. One is Daveman who actually developed POIS after he got a vasectomy and thinks that the vasectomy may have caused his POIS. The other I don't remember their name, but I'm sure there was one man here who got a vasectomy specifically hoping it would cure his POIS, but he still had POIS after he had the vasectomy done.

However one member here named Animus has cured their POIS by eliminating all sperm production and most semen production in his body via surgery.
 

Offline Quasar

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15403 on: 20/01/2012 13:47:51 »
This morning i took 100mg Niacin and the reaction really scared me! This is the second time i take Niacin. The first time i also took 100mg and had the facial flushing and noticed something different in my breathing, but everything was OK.

But this time it was a totally different story. I took it 1 hour and a half - 2 hours to take effect, on an nearly-empty stomach. At first i noticed difficulty breathing, and the facial flush was very strong, i was scared of so much blood going into my head. Also, i felt severe pain in my stomach area. Luckily, the effect went away in 5-10 mins.

So, why did i had this strong reaction to Niacin this time? Is it normal? Now i'm afraid of taking it again. Could it mean i had a lot of histamine to burn?
« Last Edit: 20/01/2012 14:27:31 by Quasar »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15404 on: 20/01/2012 17:13:56 »





I am very happy to see the wealth of info you have at the bottom of the welcome email. 

It is truly refreshing to find this group.



mrraba, thank you for the kind words!
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15405 on: 20/01/2012 18:51:36 »
Quote
I'll be brief as I have not much time:  I don't see us making the target this year UNLESS we get more people to donate who are NOT POIS sufferers, i.e. sympathizers.  The most amazing fund drives I've seen on the internet occur on the site reddit.com   A group (under the banner of atheists giving to charity) raised something like $200k in a day.  Big stuff happens when you crowdsource it.  If I were to head it up, I'd go along the lines that most reddit users are males who often celebrate the action of masturbation (search "fapping") or just sex in general.  If we could get some large-scale sympathy from that crowd, we could potentially see a lot of micro-donations.  Now they are a skeptical bunch, so any plea will have to be well written and backed up.

I have to go, I hope there is some discussion on this when I'm back!

I'd like to draw attention to this great comment by Nightingale from the poiscenter forum. Its exactly the sort of post we need right now. Please give your ideas on outside funding either here or on this thread at poiscenter.
http://poiscenter.com/forums/index.php?topic=168.msg3859#msg3859
I'm going to spend some time on outside funding ideas in the next week. Please post your ideas. If you can act on them, even better!
« Last Edit: 20/01/2012 18:53:56 by mellivora »
 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15406 on: 20/01/2012 19:46:36 »
This morning i took 100mg Niacin and the reaction really scared me! This is the second time i take Niacin. The first time i also took 100mg and had the facial flushing and noticed something different in my breathing, but everything was OK.

But this time it was a totally different story. I took it 1 hour and a half - 2 hours to take effect, on an nearly-empty stomach. At first i noticed difficulty breathing, and the facial flush was very strong, i was scared of so much blood going into my head. Also, i felt severe pain in my stomach area. Luckily, the effect went away in 5-10 mins.

So, why did i had this strong reaction to Niacin this time? Is it normal? Now i'm afraid of taking it again. Could it mean i had a lot of histamine to burn?

My first dose of niacin was 70mg on a more or less empty stomach. I have never taken more than 100mg, unless I find that I didn't get a flush, and then I take maybe 50 more. In those cases still didn't get a flush, but it must have been closer because my POIS was prevented.

I had one quite strong flush with 100mg, at 11 AM after 4 hrs of fasting. I felt almost a little nauseous for about 10 minutes, with my abdomen twitching, and whole body red, head pumping and slight breathing effects. I assume this is because of the capillaries in the lungs expanding.

Fortunately it doesn't last long. At least the worst parts.

So quasar you probably should take less and try to find YOUR dose. Or perhaps don't fast for so long before. That would probably be the best thing to control the flush.

Take 100mg after a light sandwhich or something. If there's no flush, eat the same sandwich an hour earlier etc.

In any case the flush is "impressive". But normal and short. Just try to adjust factors to keep it controlled.

 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15407 on: 20/01/2012 19:48:04 »
Thanks Mel,

Important points. We've got to get the show on the road!

BTW there's been some good chats over there already!

 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15408 on: 20/01/2012 19:58:30 »




So nice feel some aceptance after 19 years of trying to find things your own, and having pretty much given up on most doctors. 


Welcome to the "oldtimers" club haha. I wasted 30+ years on the same thing as you.

 : - )

 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15409 on: 20/01/2012 20:03:22 »

There's been some good chats over there already!


Our new POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
Just click HERE first, and then look for "CHAT" button towards top of page, 6th button to your right!
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15410 on: 20/01/2012 21:29:59 »
Welcome mrraba and littledragon - glad you found us!

yes the new chatroom is great, thanks daveman & victor!
 

Offline EDS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15411 on: 21/01/2012 13:55:23 »
Any men with POIS after a vasectomy?  Just wondering if that helps any.  Just vasectomy.


I had a vasectomy several years ago without any relief of POIS symptoms whatsoever.

On a positive note... I am having continued success with the flush type of Niacin. As others have stated, it works best with a small dose (100mg) on a empty stomach about an hour before "O".

Please fellow sufferers - Please pledge or donate to OUR POIS FUND!! I, like Demo (and some others here) have been plagued by this monster for over 30 years and would love to see the younger ones that have this malady lead a POIS free life!

I think we are on to something with this Niacin thing. If we can get a world renown group like NORD looking at this, I think they will find a connection to what is really happening to us and subsequently find a viable treatment - if not a outright cure!

It's a small sacrifice if we contribute collectively... If everyone here would just forgo one night out on the town or make some other small sacrifice over the next two months... then contribute the savings from that one event, we could meet our goal this year!!

Please contribute to help yourself and everyone here!! As well as the ones to come!!!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15412 on: 22/01/2012 01:46:09 »




THANK YOU, EDS!!
 

Offline Pharaoh

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15413 on: 22/01/2012 05:58:16 »
Hi Guys,

I hope all is well.  I have some news that may interest you.  To begin, my MRI results indicated a small hypodensity on my pituitary gland (about 3-4 mm).  The Dr. says about 10% of people have this and since my prolactin levels are normal, along with all my other hormones, except testosterone, it is unlikely that it is responsible for my symptoms.  He recommended that I see his colleague at Harvard and MGH who specializes in behavioral neurology to discuss my cognitive symptoms. 

Last Wednesday I had my appointment and was prescribed Imitrex, a triptan, to deal with the headaches.  "Triptans narrow (constrict) blood vessels in the brain and relieve swelling. Triptans have other properties that may help treat migraine symptoms." (WebMD)

About 30 min after leaving the hospital I received a call from the doctor requesting I return.  They have a weekly department meeting to discuss interesting cases and needless to say, my case counts. 

I returned to find myself in a room with 9 Harvard neurologists asking me every imaginable question.  Finally, they agreed to arrange that I see neurologists at Johns Hopkins with the recommendation to undergo cognitive behavioral therapy and to continue on the Imitrex.  They will also recommend that I see an Immunologist to explore the allergy theory.

Here's the part you've been waiting for.  Imitrex works, and works very well.  It's significantly more effective than Niacin.  It doesn't eliminate all the symptoms, there remains some back pain, some fatigue, and cognitive impairment.  However, they is far less severe and disappear far sooner.  Furthermore, I noticed that my O's are more "euphoric."  I've O'd multiple times a day, and the following day I do wake up tired, but after going through the normal morning routine (Vitamins and Espresso), I can function normally.  I managed to spend yesterday at the mall where I had no issues socializing or communicating.  Today I O'd and then received a call from a friend inviting me over.  So, let's say I arrived about 1 hr after the O.  I wasn't 100%, I still felt abnormal, however, I had no problems.  I had completely forgotten about my condition during the visit. 

I'm not entirely sure what this all means, and I hope that the results of NORD's project will shed light on why.  So, if you discuss this with your doctors and try a similar medication, please let us know the outcome.

Thanks
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15414 on: 22/01/2012 06:32:32 »

Fascinating, Pharaoh, thank you!
 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15415 on: 22/01/2012 10:50:03 »
WOW, one works dilating the vessels and another works constricting them!??

Go figure. It's great that your getting such good attention.

What was your niacin response prior? From the sounds of it, it didn't work as effectively as for some? My case is almost 100% relief cognitive and flu-like for instance. And yet Imitrex works better than niacin for others. Let's hope that between the two we can find relief for everybody. We'll just have to find a way to solicit prescriptions for Imitrex. However I don't really like the fact that we're back to behavioral neurology again!

Like you, I still have joint and muscle issues, although reduced.

There's nothing like finding something that can let you live more or less normally! Congratulations.

Very interesting your results, and should be interesting coupling them to the rest of what we know to figure things out completely for everybody.

 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15416 on: 22/01/2012 11:19:24 »
This post reminds me, that although we seem to have more than one "strain" of POIS, and even though we find that one thing helps one group and another helps another group, I find it difficult to believe that there isn't just one root cause. My opinion.

Obviously we have to be open to all the possibilities, but one of those is also this, that there is just one root cause.

Like Einstein showed, when everyone is tempted to look for disparaging divergent causes the answer can often be found seeking a unified theory. Yes the photon is a particle AND a wave.

It's possible that somewhere all of the diverse symptomatic and remedial differences point more specifically to "the one cause".

I guess I mention it because the tendency is to divide. And it obviously doesn't mean that we should stop looking for things to help us that seem to diverge from "a common understanding" of what POIS is. I think it just means that we should look at something so "unique" as this Imitrex solution as a special tool to more better isolate that "one cause".

I looked up Imitrex, and not only does it restrict the vessels in the brain, but it eliminates things in the body that cause headache and nausia!!

The doctors don't see our WHOLE picture. And they contribute as they know how. Being 9 from Harvard, they've found something that helps Pharaoh, and of course should be commended for their effort and openness.

Now WE should see if we can apply all our further knowledge to see how it fits in to a bigger picture that they don't have at their disposition.... yet!

 

Offline victor.kons

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15417 on: 22/01/2012 13:12:49 »
Thanks for the valuable information Pharaoh and congratulation you have found relive for your POIS!

To me the link between Niacin and Imitrex looks logical.

When we orgasm the body have extensive need in serotonin to reward us for perpetuation of the species activity with a mood of goodness and happiness. Probably these high level of serotonin after orgasm have not only the role of making mood of happiness, but also some other roles that need to be carried out after orgasm, or otherwise the body will be subject to POIS symptoms.

Serotonin is synthesized from tryptophan by the body, and Niacin is synthesized from tryptophan by the body. Now if we have too low level of tryptophan, or if we have malfunction of synthesis of serotonin from tryptophan or if we have bad absorption of serotonin, then as a result of an orgasm we will have lack of serotonin utilization after orgasm. Now if we supply the body with Niacin prior to orgasm, then the body will have excess of Niacin and will have no need to convert part of tryptophan to Niacin and hence it will be able to convert more tryptophan to serotonin.

The Imitrex is a serotonin receptors agonist:
http://en.wikipedia.org/wiki/Sumatriptan
Hence Imitrex allows the body to better utilize the serotonin it has which is needed after orgasm.

So, those POISers, who have normal synthesis of tryptophan to serotonin, but have lack of tryptophan (due to issues with digestion), find themselves to be relieved by Niacin. Those POISers, who have other problems in the chain of tryptophan absorption and serotonin production, find Niacin inefficient.

Victor
« Last Edit: 22/01/2012 13:19:49 by victor.kons »
 

Offline Pharaoh

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15418 on: 22/01/2012 17:30:03 »
Hi Guys,

Thanks for the support.  I'm amazed at how well I feel today following multiple O's last night.  No physical pain and no depression.  In fact, I actually felt upbeat and joked around with random people at the supermarket.  That's rare for me even months after my last O.  I still have some pressure and a friend who also takes Imitrex, but for migraines, recommended I take 400-800 mg of strong ibuprofen if the remaining pain doesn't entirely disappear.  That does help.

Regarding your question daveman, my niacin response was limited.  To be honest, I found little relief the first few times, but gradually niacin was no longer effective.  I always had a feeling there was a neurological dimension to this syndrome.  I recognized that during arousal, prior to orgasm or even pre-ejaculate emission, my head would feel like it was about to explode and I would experience POIS like symptoms.  I always ask my doctors about the link between an allergic response and serotonin and dopamine deficiency.  Their answers were never satisfactory, and in some cases, they could not prove a definitive answer. 

Interestingly, flushing is also a symptom of Imitrex.  Also, I find victor's explanation interesting.  I intend on asking the docs about the link.   

I'm looking forward to seeing the people at Hopkins and I will most definitely provide updates.  I wasn't too keen on cognitive behavioral therapy either, however, the neurologists tell me that the results actually alter the brain.  And that this is supported by functional MRI's.  Quite honestly, given that the Imitrex they have prescribed has provided much needed and unexpected relief, I am more than willing to follow their recommendations.

Thanks again guys and looking forward to reading more of your analyses.
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15419 on: 22/01/2012 18:32:27 »
I wasn't too keen on cognitive behavioral therapy either, however, the neurologists tell me that the results actually alter the brain.  And that this is supported by functional MRI's.  Quite honestly, given that the Imitrex they have prescribed has provided much needed and unexpected relief, I am more than willing to follow their recommendations.
Indeed, controlled scientific studies have shown that mindfulness-based cognitive therapy can not only alter brain functioning in ways that are thought to be positive (as measured by fMRI scan studies) but it has actually been shown it can alter the physical structure of the brain, presumably meaning it can have permanent, longterm effects.

Cognitive therapies like this won't cure us i don't think. However, I have come to think they are important. Several people here have reported they suffer from anxiety, depression etc. Cognitive therapy can certainly help with these things and its been shown it can strengthen the immune system, change the brain itself etc - i.e. have physical, measurable effects on bodily functions.

Eventually, I expect we'll find a specific medical treatment that ends up tackling POIS directly but I think cognitive therapy could be beneficial in enhancing this and in promoting our well-being in the long-term. Certainly, mindfulness cognitive therapy, as has been recommended to me by a colleague of Dr Goldmeier, has been proven in controlled scientific studies to have profound effects on the happiness of those who practice it. In studies, its been shown to be at least as effective as antidepressants. And what is the feeling of happiness but the actions of neurotransmitters/hormones on receptors (serotonin etc) - some of the very things we've been theorising might be at the heart of pois. So I think we would be wise not to be dismissive of cognitive therapy. I don't expect it can cure us. But I would be very surprised if it couldn't play a role in helping us.
« Last Edit: 22/01/2012 18:34:13 by mellivora »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15420 on: 23/01/2012 02:54:52 »
"The Science of Orgasm" author responded to my inquiry about their recently published Rutgers University (NJ) study of fMRI's of female orgasm.

Dear Demografx,

Thank you for your interest in our research.  I have attached a copy of the poster that we presented.  The ipad on the poster contained the video of the fMRI animation of brain activity related to orgasm.  It can be viewed on You Tube.

Please let me know if you have questions or comments about our poster.

Barry R Komisaruk, Ph.D.

If anyone wishes to see the attached poster he presented, PM me your regular (@) email address. Demo.
« Last Edit: 23/01/2012 03:05:00 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15421 on: 23/01/2012 06:34:53 »

Thanks for the valuable information Pharaoh and congratulation you have found relive for your POIS!

To me the link between Niacin and Imitrex looks logical.

When we orgasm the body have extensive need in serotonin to reward us for perpetuation of the species activity with a mood of goodness and happiness. Probably these high level of serotonin after orgasm have not only the role of making mood of happiness, but also some other roles that need to be carried out after orgasm, or otherwise the body will be subject to POIS symptoms.

Serotonin is synthesized from tryptophan by the body, and Niacin is synthesized from tryptophan by the body. Now if we have too low level of tryptophan, or if we have malfunction of synthesis of serotonin from tryptophan or if we have bad absorption of serotonin, then as a result of an orgasm we will have lack of serotonin utilization after orgasm. Now if we supply the body with Niacin prior to orgasm, then the body will have excess of Niacin and will have no need to convert part of tryptophan to Niacin and hence it will be able to convert more tryptophan to serotonin.

The Imitrex is a serotonin receptors agonist:
http://en.wikipedia.org/wiki/Sumatriptan
Hence Imitrex allows the body to better utilize the serotonin it has which is needed after orgasm.

So, those POISers, who have normal synthesis of tryptophan to serotonin, but have lack of tryptophan (due to issues with digestion), find themselves to be relieved by Niacin. Those POISers, who have other problems in the chain of tryptophan absorption and serotonin production, find Niacin inefficient.

Victor


Fascinating, Victor!
 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15422 on: 23/01/2012 10:10:52 »
Quote
Sumatriptan is structurally similar to serotonin (5HT), and is a 5-HT (types 5-HT1D and 5-HT1B[7]) agonist. The specific receptor subtypes it activates are present on the cranial arteries and veins. Acting as an agonist at these receptors, Sumatriptan reduces the vascular inflammation associated with migraine.

Is inflammation causing a run out of serotonin and then tryptophan and then vitamin B3 ?


B3 is also involved as a precursor in the histamine chain. And could well be like Victor says, if you have the pre-cursor and can't use it, the solution is one, but if you are low in production of the pre-cursor the solution is the other.

Diabetes is that way. There are two types of insulin, one in which the body lacks insulin, and another where the body has enough but doesn't know how to use it. Two completely different solutions, same final result.

So in POIS, I think that's what we are looking at.

It's incredible what we can do as lay-people, isn't it!!??


 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15423 on: 23/01/2012 16:05:20 »

It is incredible, daveman!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15424 on: 23/01/2012 16:10:27 »
"The Science of Orgasm" author responded to my inquiry about their recently published Rutgers University (NJ) study of fMRI's of female orgasm.

Dear Demografx,

Thank you for your interest in our research.  I have attached a copy of the poster that we presented.  The ipad on the poster contained the video of the fMRI animation of brain activity related to orgasm.  It can be viewed on You Tube.

Please let me know if you have questions or comments about our poster.

Barry R Komisaruk, Ph.D.

If anyone wishes to see the attached poster he presented, PM me your regular (@) email address. Demo.


I wrote back to thank Dr Komisaruk and to also ask if he can point us to any fMRI studies of MALE orgasm, or whether such studies are being contemplated.

My hunch is that male orgasm fMRI's could be a big breakthrough in POIS medical research.

 

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15424 on: 23/01/2012 16:10:27 »

 

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