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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6451646 times)

Offline underwater

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3425 on: 10/02/2009 18:06:22 »
To Girlwind and Demo, may your good fortunes continue---
Perseverence and positive momentum in pursuing successful therapies is critical.
Let's hope that many approaches will now yield positive results.
Might there may be a link between CFS and POIS? Might there be a link between "specific" male sexual issues and POIS? Might there be a link between GAD and POIS? Autoallergic issues or external ones? etc. etc. etc.
At least there is one thing for sure; this forum has definitely provided important connections for people. And that is the most valuable thing.




 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3426 on: 10/02/2009 18:18:57 »
To Girlwind and Demo, may your good fortunes continue---
Perseverence and positive momentum in pursuing successful therapies is critical.
Let's hope that many approaches will now yield positive results.
Might there may be a link between CFS and POIS? Might there be a link between "specific" male sexual issues and POIS? Might there be a link between GAD and POIS? Autoallergic issues or external ones? etc. etc. etc.
At least there is one thing for sure; this forum has definitely provided important connections for people. And that is the most valuable thing.


Many thanks, Underwater. This forum has been incredibly helpful to me and others. And I hope the spirit of diversity prevails and continues to be helpful to many people, including the many people who are silently reading as we hold forth and pontificate! ;D
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3427 on: 10/02/2009 18:21:16 »
POIS DIARY

I can't believe another day is starting POIS-free!!! Thank you everyone for being here!!!
 

Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3428 on: 10/02/2009 18:41:26 »
MICHAEL8028: REPLY TO HIS POSTED POIS CURE BY MY UNIVERSITY ENDOCRINOLOGIST.

"Most of the post is scientifically untenable. Saliva tests are very inaccurate. Unless I see real blood test results, done in a reputable lab, from this patient I'd ignore it. Sorry to be so dismissive but I've had experience with these false sirens before."

That's a very predictable opinion. Unfortunately you can't argue with RESULTS.

To the extent that they're believable.

To state that someone's post is "scientifically untenable," and to imply that they are not believable is the next
best thing to an attack. The real question is why would Michael's successful results with his health and with his
POIS symptoms feel like such a threat, that it would warrant such a public dismissal. I think it's an ugly thing
to do, especially on a forum where we are looking to find answers to a problem that has plagued so many of
us for so long. Sometimes successful people bring out the worst insecurities in others, who then feel a need
to blast them with criticism in order to prop themselves up. I really hate seeing that happen here.

« Last Edit: 10/02/2009 18:57:09 by girlwind »
 

Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3429 on: 10/02/2009 18:55:03 »
Michael's solution to his POIS and other health issues required a serious long term commitment to his health.
There was "no silver bullet" cure. Instead there was an ONGOING INVESTIGATION into ALL the ENDOCRINE
HORMONE levels,
and a well thought out treatment plan to remedy ALL the imbalances. I think that the fact
that there was NO ONE THING that cured his POIS, and in fact MANY DIFFERENT things at different times in
different dosages, might be an overwhelming reality to have to face. For me it has been an arduous and costly,
but also very rewarding process. Having been ill for 30 years with conditions doctors have had no answers for
I can't begin to express the total RELIEF I feel right now, knowing that I am FINALLY on the right track.
My wish is that everyone else feel that relief, that you all find whatever it is you need to heal your POIS and other
related health conditions.  Best of luck to all of you. 
« Last Edit: 10/02/2009 19:01:40 by girlwind »
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3430 on: 10/02/2009 18:56:55 »
Am going to say this about the argument on micheal,
Micheal is not forcing anyone to do exactly what he did, however is actions are showing credibility. When both girlwind and demo are mentioning improvement by restoring balance the hormones that are out of whack.    
That is all micheal is suggesting to do, figure out where the balance is being tipped and bring that balance back to normal.            
The Fact that maybe some of his test were not scientific does not matter, He was probably forced to follow that route when The so called scientific world ignored and dismissed his problem as psychiatric problem.  
 

Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3431 on: 10/02/2009 20:19:29 »
Lately it seems POIS suffers are finding cures for their type of POIS (I won't list names because the list is long).  This is great!!!

However, it seems that a particular type of POIS, almost stictly cognitive, no one has had any success.  This is the type that I have, which is similar to CounterPoints, John21, and CConfucius.  Why is this?

I'm currently taking 50mgs of synthetic thyriod hormone because my TSH was 6.0.  I'm also beginning to feel the effects after 3 weeks of medication, but I'm concerned because it doesn't 'feel' like its curing POIS.  I haven't released since taking the medication, so thats not my suspission of not working, but I'm still sensative to carbs, a light sleeper (sleeps gotten worst on the medication), and lack creativity (that I used to have) and social happiness when being around people.  I feel boring and lifeless.  Even while writing this post I feel emotionless.

Is anyone seeing improvements who has cognitive POIS?



 

Offline underwater

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3432 on: 10/02/2009 21:54:42 »
Limejuice--
I think we are close. You have overwhelming cognitive problems. I have amped up, depressive/anxious problems. We know there are hormones and neurotransmitters involved. I have faith that if I can improve myself daily (without "O") and actually feel better and stronger and more alert, then I can take momentum with me to deal with POIS. I don't believe POIS exists alone; the biochemical problems are already with us, they just manifest themselves overwhelmingly in POIS. I think Girlwind and Demo are good examples of this i.e. different approaches to multiple conditions leading to, hopefully, a resolution of POIS along with those other conditions.
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3433 on: 10/02/2009 23:03:34 »
Lately it seems POIS suffers are finding cures for their type of POIS (I won't list names because the list is long).  This is great!!!

However, it seems that a particular type of POIS, almost stictly cognitive, no one has had any success.  This is the type that I have, which is similar to CounterPoints, John21, and CConfucius.  Why is this?

I'm currently taking 50mgs of synthetic thyriod hormone because my TSH was 6.0.  I'm also beginning to feel the effects after 3 weeks of medication, but I'm concerned because it doesn't 'feel' like its curing POIS.  I haven't released since taking the medication, so thats not my suspission of not working, but I'm still sensative to carbs, a light sleeper (sleeps gotten worst on the medication), and lack creativity (that I used to have) and social happiness when being around people.  I feel boring and lifeless.  Even while writing this post I feel emotionless.

Is anyone seeing improvements who has cognitive POIS?


The only big step I've made is the result of my 24 hr urine cortisol test.  It was about 515 nmol/d (ref: 30-220 nmol/d). In the past, I had above reference cortisol blood tests, but the endo I saw didn't seem to care about them that much, just the urine test (which was ordered by a different doctor).

But my urine cortisol test (by standard protocols) is cause for an immediate MRI of the abdomen and pituitary. 

My TSH and T4 levels are healthy.  My T3 is above reference... but it didn't concern the endocrinologist I saw.
« Last Edit: 10/02/2009 23:11:29 by Counterpoints »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3434 on: 11/02/2009 00:46:19 »

To state that someone's post is "scientifically untenable,"...


I started to respond, (the above quote is not mine) but when you Private Message me telling me that my moderation "SUCKS" and to not write back: conversation's over. But I wish you well. Thanks.
« Last Edit: 11/02/2009 00:56:55 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3435 on: 11/02/2009 01:19:21 »

I don't believe POIS exists alone; the biochemical problems are already with us, they just manifest themselves overwhelmingly in POIS.


Underwater, although this makes perfect sense, it overwhelmingly feels like POIS is this isolated piece of machinery that never, never surfaces except upon orgasm. Indeed, the eerie feeling of POIS for me is absolutely unique. Although occasionally I will feel the dried fingertips, the basic emotional-cognitive-physical package of POIS never surfaces in my life elsewhere. I have heard this reported elsewhere.


I have faith that if I can improve myself daily (without "O") and actually feel better and stronger and more alert, then I can take momentum with me to deal with POIS...I think Girlwind and Demo are good examples of this i.e. different approaches to multiple conditions leading to, hopefully, a resolution of POIS along with those other conditions.


Underwater, I hope you don't think I'm being oppositional today! You know, one of those bad hair days, :) but I sincerely believe, and please don't take this as bragging, I finally found a CURE, not a self-amelioration track...to a direct cure for my POIS!: a testosterone and Levitra "cocktail".

The pieces of the puzzle have come together these past few days with a fully expected severe case of POIS (Triple "O", typically qualifying me for a hospital stay, a mental institution or both!). It didn't happen. Just like early last year when I "thought" I had a cure. Actually the pieces did come together nearly two years ago when I tried the treatments independently and then together, but didn't realize that they needed to work together!

I might be wrong. This might be yet another placebo. But I doubt it. I have well over 2 years experience with this now and it has gotten more and more obvious every day what happened and what it's like now. Part of the mystery was the depotestosterone I took previously: the T-injectable "spikes" - after a rush of testosterone in the system, it wears off. The patches deliver a steady stream to the system, mimicking the body's natural delivery of T.

This all started in 2002, when Dr. Waldinger's study came out. In yet another desperate attempt to cure POIS, I contacted a sexual research expert who was being interviewed on Larry King Live. He sent me to a well-known Virginia researcher who referred me to a researcher in Czechoslovakia. The Czech researcher believed testosterone would cure POIS. (I was desperate enough to fly to the Czech Republic). The first time, the injection worked miraculously. After that, it didn't seem to work anymore so I abandoned the venture. Fast forward to 2007, and you can read many of the boring posts about Levitra here:
http://www.google.com/search?hl=en&q=levitra+demografx+POIS+site%3Ahttp%3A%2F%2Fthenakedscientists.com&aq=f&oq=

I often say "75% cure" but the truth is: I can live with this.

People have watched me now here for 2 years and I wanted to give them what I hope is a conclusion to my 30+ year extremely painful saga of POIS. and hope for their own painful trials and tribulations.

I owe much of where I am to everyone here that I've been in contact with at this forum, including just reading, so thank you from the bottom of my heart!
« Last Edit: 11/02/2009 03:25:02 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3436 on: 11/02/2009 03:04:51 »

...it seems that a particular type of POIS, almost stictly cognitive, no one has had any success.  This is the type that I have, which is similar to CounterPoints, John21, and CConfucius.  Why is this?


Hi, Limejuice. Although I'm not "strictly cognitive," much of my despair was over my mental sluggishness. The last few days have been an absolute delight with the word "clearheaded" running through my mind constantly. With a smile on my face.

My message of hope is that perhaps we're not all that different. If all I got out of my treatment was clearheadedness, I would still be grateful.

And if some of us are really that unique, we are still learning principles that hold across symptoms: e.g., when I first got to this forum I had no clue what an endocrinologist does.

And some would say I still don't ;D
« Last Edit: 11/02/2009 03:19:28 by demografx »
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3437 on: 11/02/2009 03:38:59 »
Am going to say this about the argument on micheal,
Micheal is not forcing anyone to do exactly what he did, however is actions are showing credibility. When both girlwind and demo are mentioning improvement by restoring balance the hormones that are out of whack.    
That is all micheal is suggesting to do, figure out where the balance is being tipped and bring that balance back to normal.            
The Fact that maybe some of his test were not scientific does not matter, He was probably forced to follow that route when The so called scientific world ignored and dismissed his problem as psychiatric problem.  
Confucius, you're very right when you say "forced to follow that route". I think everyone here was forced to search for an alternative treatment at one time or another.
About one point of your post I just wanted to say that eventually it could be important to have accurate tests when you're planning all your treatment on this information, especially with hormones supplements.
 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3438 on: 11/02/2009 05:34:29 »
hey guys, I've stayed abstinent for about a week and 3 days and I gotta say, about ten minutes ago I masturbated and usually I get intense anxiety and stuff, but right now I actually feel not too bad, just a little tired since its 1230 at night.  I don't know if I am cured, but I am going to say that the "waiting" technique is definitely working for me.  ;D
« Last Edit: 11/02/2009 05:47:46 by goingcrazy »
 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3439 on: 11/02/2009 05:47:31 »
I just did it again lol... I feel pretty good, almost better than I had been feeling, no bad side effects.  This is a very weird illness, I would say I still have pois because I am not particularly certain I am cured.  I am just going to have sex a maximum of once per week.
 

Offline underwater

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3440 on: 11/02/2009 05:51:03 »
Demo--
I feel your enthusiasm and joy coming through the computer screen.
I think it's going to be incredibly motivational for all.
You know, it's a breath of fresh air to feel your confidence.
You have shown that it takes three to tango: Levitra, Testosterone and Patches.
This is a great lesson. Mix and Match. This is what I just started doing a few days ago. It used to just be neurotransmitter balancing, but now I've added an anti inflammatory focus. I could be wrong, but due to my amped up, anxiety/depression end of the scale (rather than extreme brain fog/fatigue), I have not yet focused directely on testosterone, prolactin etc. I may have to change, but since my GAD symptoms are identical to POIS, I'm on this path right now. We'll see. But I am now much more open to change and the need to be radically flexible. GRACIAS!
 

Offline rob58

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3441 on: 11/02/2009 10:35:10 »
Demo:
Just a practical issue. Given that you have not experienced a poor outcome just being on testosterone, with the right delivery mechanism, is it possible that there is no need for Levitra as part of your cure?  I guess that is a question about the minimal effective set of medications.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3442 on: 11/02/2009 16:25:11 »

Demo:
Just a practical issue. Given that you have not experienced a poor outcome just being on testosterone, with the right delivery mechanism, is it possible that there is no need for Levitra as part of your cure?  I guess that is a question about the minimal effective set of medications.


Before I answer this, I thought of your last post about depletion/replenishment this morning as I was reading the Rx info sheet on the T-patches. The Rx sheet stated the obvious, that "T helps the body to produce sperm". I think I can "feel" that happening in my body. I could "feel" the emptiness before when it would take forever to "fill up." But, who knows, maybe my imagination is running wild? :)

Rob, not exactly sure about the first part of your post above, "not a poor outcome on T only".

But I can answer the Levitra part, yes you're absolutely right, it's possible there is no need for Levitra. But it scares me what I need to do to find out! ("O" = POIS = "death"?) How quickly I've become spoiled! But in all honesty, 30 years of this, I'm surprised that I'm not locked up somewhere!

Well, science demands an answer so I guess I'll have to try it. But not just now. :)
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3443 on: 11/02/2009 16:32:48 »

Demo--
I feel your enthusiasm and joy coming through the computer screen.
I think it's going to be incredibly motivational for all.
You know, it's a breath of fresh air to feel your confidence.
You have shown that it takes three to tango: Levitra, Testosterone and Patches.
This is a great lesson. Mix and Match. This is what I just started doing a few days ago. It used to just be neurotransmitter balancing, but now I've added an anti inflammatory focus. I could be wrong, but due to my amped up, anxiety/depression end of the scale (rather than extreme brain fog/fatigue), I have not yet focused directely on testosterone, prolactin etc. I may have to change, but since my GAD symptoms are identical to POIS, I'm on this path right now. We'll see. But I am now much more open to change and the need to be radically flexible. GRACIAS!


Underwater, thanks, your welcoming post is a heckuva great way to start the day!

I wasn't sure if I should take what you wrote literally about "3". I look at the T-patches as "1" product. But either way, we're saying the same thing.

I feel so ignorant for not recognizing the combination effect for 2 years!

But then again, it takes most of us a while to catch on to the fact that POIS is related to sex the day/night before.

Thanks again, Underwater!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3444 on: 11/02/2009 17:06:03 »

I don't know if I am cured, but I am going to say that the "waiting" technique is definitely working for me.  ;D


Great, GC.

Maybe that's all you need to work on.

Good luck!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3445 on: 11/02/2009 19:42:43 »

It used to just be neurotransmitter balancing, but now I've added an anti inflammatory focus. I could be wrong, but due to my amped up, anxiety/depression end of the scale (rather than extreme brain fog/fatigue), I have not yet focused directely on testosterone, prolactin etc. I may have to change, but since my GAD symptoms are identical to POIS, I'm on this path right now. We'll see. But I am now much more open to change and the need to be radically flexible. GRACIAS!


FWIW, Underwater, the testosterone also helps uplift my mood quite a bit. The literature confirms this. Just as a start, find out if you're low in some hormonal areas. But several people here at the forum were right that several types of T-tests are needed: previously, my GP and my urologist didn't do that and erroneously found me to be "normal" in T! The more detailed tests (not a big deal at all, just one small blood sample) confirmed the deficiency. And that deficiency might - just maybe - contribute to GAD?
« Last Edit: 11/02/2009 19:44:55 by demografx »
 

Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3446 on: 12/02/2009 23:18:25 »
Today I bought a cortisol reducing suppliment called Phosphatidylserine.  I've never tested for cortisol but have an incling that its high (I feel stressed and CounterPoint's is high - he has the same type of POIS).  The best next step would be to get it tested but I will try this in the intern.

With thyriod hormone and cortisol reduction, maybe thats my POIS cure!
« Last Edit: 12/02/2009 23:21:15 by Limejuice »
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3447 on: 12/02/2009 23:55:11 »
Today I bought a cortisol reducing suppliment called Phosphatidylserine.  I've never tested for cortisol but have an incling that its high (I feel stressed and CounterPoint's is high - he has the same type of POIS).  The best next step would be to get it tested but I will try this in the intern.

With thyriod hormone and cortisol reduction, maybe thats my POIS cure!

Hi Limejuice,
Good luck :)!.  I tried Phosphatidylserine (PS) for a little while.  I'm not sure if it helped too much or not.  I hope it works for you.  If you do have a tumor, either in your pituitary, adrenal gland, or elsewhere (ectopic) causing excess cortisol release, I don't think PS supplementation will help very much.

My current POIS theories

1) I think there may be something wrong with our pituitary glands or adrenal glands.  At the beginning of this thread,
there was much discussion of dopamine and prolactin.  We were (or at least I was) trying to understand the neurochemistry of orgasm.  And the available information suggests that dopamine decreases and prolactin increases.  From that information, we tried to formulate various theories.  For instance, there is an article showing that dopamine depletion causes POIS-like cognitive symptoms.

Now, the pituitary regulates prolactin levels.  So it is possible that the pituitary has an important role in our response to orgasm (even beyond prolactin).  But the pituitary also communicates with the adrenal gland, affecting cortisol levels.  So abnormal cortisol levels could indicate a problem with the pituitary.  Now, high cortisol HAS been linked to anxiety, distress, and many cognitive symptoms.  Just look up Cushings (http://www.csrf.net/page/the_basics.php).  But perhaps there is more to it than high cortisol? Maybe high cortisol is merely an indication that something is wrong with the pituitary... and this more general malfunction is also affecting our response to orgasm (dopamine levels, etc.).   Abnormal prolactin levels could also be an indication of some kind of pituitary malfunction... but maybe the prolactin levels themselves are not a major cause of the symptoms?  (I actually have normal prolactin levels, as well as normal FSH And LH). 

In short, in different cases, we might be getting different signals that something is wrong with the pituitary.  And the 'different signals' would account for moderate variations in symptoms, but all with the same stimulus (orgasm).

Pyropeach mentioned there was a growth found on his pituitary (I'd definitely recommend cortisol testing).  Demografx has an empty selum.  And I got very high cortisol levels on a 24 hr urine test.  And we all have post-orgasm symptoms.  The link?  Pituitary.

2) The alternative (which I think is possibly more likely), is that we have a tumor (somewhere -- possibly pituitary or adrenal), which is being either chemically or physically stimulated by orgasm/ejaculation.  Amongst other things, this could cause cortisol release.

3) (Less likely).  Orgasm is causing inflammation of some type.  Maybe this results in a natural overproduction of cortisol?

Also: A regular brain MRI will often NOT show a pituitary growth.  You need a specific MRI of the pituitary, with gadolinium enhancement.  Even then, I read that there is a decent chance it may not show.

I haven't had time to organise these thoughts.. but I hope you find them helpful.  I'd like to again encourage people to consider a 24 hr urine cortisol test.  (And prolactin, FSH, LH, TSH, T3, T4).

« Last Edit: 13/02/2009 00:13:07 by Counterpoints »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3448 on: 13/02/2009 00:24:13 »

With thyriod hormone and cortisol reduction, maybe thats my POIS cure!


Limejuice, best wishes!!!!!

 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3449 on: 13/02/2009 00:37:19 »

My current POIS theories

1) I think there may be something wrong with our pituitary glands or adrenal glands. 

2) The alternative (which I think is possibly more likely), is that we have a tumor (somewhere -- possibly pituitary or adrenal), which is being either chemically or physically stimulated by orgasm/ejaculation. 


I was shocked with the pituitary revelations of my bloodwork and Brain MRI, as you cited.

But my 75%+ cure (4th "O" in 4 days yesterday with only mild and quickly disappearing symptoms) also may point to Rob's depletion/replenishment theory ( [1] testosterone = efficient sperm replacement and [2] nitric oxide from Levitra, re-stimulating oxytocin, which has been depleted).

Counterpoints, is the above compatible with your pituitary/adrenal theory or completely different?
« Last Edit: 13/02/2009 00:54:15 by demografx »
 

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Re: Post Orgasmic Illness Syndrome (POIS)
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