Post Orgasmic Illness Syndrome (POIS)

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6250 on: 30/11/2009 21:41:12 »

When you say your T was low...do you mean close to lower normal range or below lower normal range?


I spent the last hour searching old posts for the comprehensives, couldn't find them so here's an older post that covers "free T", but I had many hormones tested, including LH, total T, bioavailable T, and much more.


Below, from a previous post of mine, are the results of some free-T results after wearing T-patches for 6 weeks. I have more recent results, which to me aren't important because the patches are working very nicely on my POIS.


SOME TESTOSTERONE TESTING

Someone here asked me privately for my "free testosterone" testing results (much more was tested), so I thought I'd post it in case anyone else is interested:


Before POIS treatment:
(December 2, '08)
                                    reference range

%FREE T            1.47 %           1.5 - 2.2
FREE T             24.4 pg/mL        35 - 155


After POIS treatment:
(March 2, '09 after about 6 weeks of wearing T-patches)


%FREE T             1.45 %             1.5 - 2.2
FREE T              37.0 pg/mL          35 - 155


Free T jumped 50%, from 24.4 to 37.0.

Endocrinologist expects the numbers to keep increasing through June. If they don't, he'll switch me from Androderm T-patches 10mg daily to a pump gel to increase my testosterone.

My endo, who has a very good reputation in the field, agreed with my theory, that even when the T-patches brought me into normal T range and I saw improvement, a 50% increase in T-patches would help POIS dramatically and it did.

« Last Edit: 30/11/2009 21:45:34 by demografx »

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Offline Pablo445

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6251 on: 30/11/2009 21:51:15 »


I have another question for everyone - does anyone experience "derealization" during a POIS episode?


Yes, I have experienced it and, many others have reported the same. Here are some previous posts to look at:
http://www.google.com/search?hl=en&q=derealization+POIS+site%3Ahttp%3A%2F%2Fthenakedscientists.com&aq=f&oq=&aqi=

I read through several posts and I still do not quite get what "derealization" means...  A sense that everything real seems fake?  Or a sense that "I" am outside of reality? Or a sense of confusion - cannot grasp what is really going on around me? A sense that I am not the "real me" anymore? What would be a simple definition? Would the "real" definition please stand up  (drum roll)...

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Offline Dean93

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6252 on: 30/11/2009 22:13:32 »
are you more introverted or extroverted?

Definitely extroverted

active or sedentary?

Active

what is your stress level (judged on a scale 1 to 10)?

Almost non-existent, unless under rare exceptional circumstances 

how often are you hungry?

Normally

what is your stool like? (tending towards diarrhea, constipation, or average)

Since I don't know, I'll say average

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Offline Dean93

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6253 on: 30/11/2009 22:31:13 »


I have another question for everyone - does anyone experience "derealization" during a POIS episode?


Yes, I have experienced it and, many others have reported the same. Here are some previous posts to look at:
http://www.google.com/search?hl=en&q=derealization+POIS+site%3Ahttp%3A%2F%2Fthenakedscientists.com&aq=f&oq=&aqi=

I read through several posts and I still do not quite get what "derealization" means...  A sense that everything real seems fake?  Or a sense that "I" am outside of reality? Or a sense of confusion - cannot grasp what is really going on around me? A sense that I am not the "real me" anymore? What would be a simple definition? Would the "real" definition please stand up  (drum roll)...

Derealization was one of my strongest symptoms, that was, before I took relora. To be clear, I took it for a period of time, stopped taking it, and I still don't experience it.

For me, derealization is synonymous with "brain fog", but not with lack of concentration or even confusion. For me, it is the isolated symptom of really feeling like you're in a fog. Some people describe is as having a veil covering their eyes or being behind a permanent pane of glass. I describe it as being completely detatched from the world around you, perhaps even your own body.

Here's an old post of mine that will help, I hope.

Throughout all the years that I've had POIS it has changed a lot. The most notable change is that I have a lot less brain fog. I think this happened after taking relora. After my brainfog-less POIS episode while on relora, I haven't had the same brain fog that I always had. When I say brain fog, I'm referring mostly to derealization. This "brain fog", to me, was like an actual "pseudo-physical" thing, like an actual fog in my head, not just a loss of concentration. It is the thing that would make me pick up an actual physical object and say "Is this real?", "Is this actually there?". I felt entirely detached from the world around me, like i couldn't reach out and touch someone. That doesn't happen anymore, but I think it has kind of screwed up my gauge of what is normal. Now out of POIS I don't know if I have just a little brainfog, or If that's just "baseline" for me. Things aren't completely clear, visually, to me, even out of POIS. The question I ask myself when holding an object now is "How close am I supposed to feel to this?"



Oh and by the way, I'm not claiming any of that to be a "real" definition, just trying to help you understand.
« Last Edit: 01/12/2009 03:32:36 by Dean93 »

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Offline Pablo445

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6254 on: 30/11/2009 22:38:44 »


I have another question for everyone - does anyone experience "derealization" during a POIS episode?


Yes, I have experienced it and, many others have reported the same. Here are some previous posts to look at:
http://www.google.com/search?hl=en&q=derealization+POIS+site%3Ahttp%3A%2F%2Fthenakedscientists.com&aq=f&oq=&aqi=

I read through several posts and I still do not quite get what "derealization" means...  A sense that everything real seems fake?  Or a sense that "I" am outside of reality? Or a sense of confusion - cannot grasp what is really going on around me? A sense that I am not the "real me" anymore? What would be a simple definition? Would the "real" definition please stand up  (drum roll)...

Derealization was one of my strongest symptoms, that was, before I took relora. To be clear, I took it for a period of time, stopped taking it, an still don't experience it.

For me, derealization is synonymous with "brain fog", but not with lack of concentration or even confusion.For me, it is the isolated symptom of really feeling like you're in a fog. Some people describe is as having a veil covering their eyes or being behind a permanent pane of glass. I describe it as being completely detatched from the world around you, perhaps even your own body.

Here's an old post of mine that will help, I hope.

Throughout all the years that I've had POIS it has changed a lot. The most notable change is that I have a lot less brain fog. I think this happened after taking relora. After my brainfog-less POIS episode while on relora, I haven't had the same brain fog that I always had. When I say brain fog, I'm referring mostly to derealization. This "brain fog", to me, was like an actual "pseudo-physical" thing, like an actual fog in my head, not just a loss of concentration. It is the thing that would make me pick up an actual physical object and say "Is this real?", "Is this actually there?". I felt entirely detached from the world around me, like i couldn't reach out and touch someone. That doesn't happen anymore, but I think it has kind of screwed up my gauge of what is normal. Now out of POIS I don't know if I have just a little brainfog, or If that's just "baseline" for me. Things aren't completely clear, visually, to me, even out of POIS. The question I ask myself when holding an object now is "How close am I supposed to feel to this?"



Oh and by the way, I'm not claiming any of that to be a "real" definition, just trying to help you understand.

I guess the closest feeling I have is the sense that "I am stuck in a giant thick spiderweb" but at no time do I actually believe I am in a spider web - it's just a anxiety filled impression of lacking some oxygen, fuzzy vision and feeling oppressed. If that corresponds to derealization then: Yes I do. To me those are all signs of adrenal exhaustion.

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Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6255 on: 30/11/2009 23:25:05 »
I received blood work test results for Testosterone today:

Test        Actual    Reference Range
Total T       950       300 - 900
Free T         20        5 - 25


As shown, I'm average or above average in both tests.  The doctor would not prescribe medication for either test and I probably wouldn't want them to.

Back to the drawing board.

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Offline EDS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6256 on: 30/11/2009 23:41:19 »
EDS, how does the supplemented T continue to work for you?  At the same success as before, better, or worst?  Thanks!

Quote from: Limejuice on 12/11/2009 22:12:29
I understand.

I'm reluctant to push to try T for one reason - I don't want to jeopardize my natural production of T.  If supplemented T is not the answer to POIS for me, and in testing this disrupted the natural levels for the rest of my life, I would be....upset.

With only you, Demo, cured that risk is too high for me.  If most the forum was cured with T that's a different story.



Make that two of us now! I can safely say that T treatments (5 mg patches) are helping me. I will estimate 60% because it seems to have shortened my recovery time to about half and the time I'm in POIS is less severe. As I stated almost three months ago that I would be happy to see a 5% or 10% improvement - I am seeing far better than that!

I went from 3-4 days of full blown POIS to a day or two. What is strange is that my 1st day, before T treatment, wasn't too bad; now it is my worst day, but day two is much better; which WAS my worst day. So it seems to have accelerated the time for POIS to "kick-in" and also go away. The whole nightmarish process has been moved up by a couple of days.

What does this mean? Is it just the addition of T that is causing improvement? Or is the additional T affecting some other function that speeds up the time to reach full POIS symptoms and recovery?

I don't know what is happening, of course, but I'm sure glad it is!!!!! After over 30 years of this plague, this is the first time I have tried anything that helped!! Thanks Demo!! POIS is getting cross wired... interupted... or something because it is definitely different than it has ever been after "O" for me.

Thanks to everyone involved in this forum! If we keep it up, I know we'll beat this thing!!


Thanks for asking LJ!

Not much has changed from the post above on 12/11/09. I still have improvement from the way it used to be. As stated above, I'm saying 60% improvement mostly based on the time it takes for the process/illness to improve. Maybe a larger dose would move that number higher.... I don't know yet. I'm just thrilled that something has helped, because for the last 30 years I had to just wait four days for the symptoms to subside.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6257 on: 30/11/2009 23:55:42 »

I read through several posts and I still do not quite get what "derealization" means...


Maybe this will better explain?
Derealization, definition from wikipedia:
http://en.wikipedia.org/wiki/Derealization
« Last Edit: 01/12/2009 06:27:42 by demografx »

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6258 on: 01/12/2009 00:30:39 »
Yes, I had that feeling of derealization.  It pretty much went away as of now, but I had it for about a year straight.  Now I am limiting O'ing down to once every 2 weeks, ever since last year when I had it it has definitely gotten better.  I'm pretty sure I don't even have it anymore.

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Offline Mr_Canadian

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6259 on: 01/12/2009 00:45:15 »
Goingcrazy - so your derealization lasted 24/7 for a year?

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6260 on: 01/12/2009 01:58:01 »

Maybe a larger dose would move that number higher.... I don't know yet. I'm just thrilled that something has helped, because for the last 30 years I had to just wait four days for the symptoms to subside.


10mg/daily brought me into normal T range. I asked for and received a 50% increase, to 15mg/daily, and THAT was a major POIS strike.

"I'm just thrilled that something has helped, because for the last 30 years I had to just wait four days for the symptoms to subside." Describes me exactly, down to the 30 years and the four days! [:)]

Once again, EDS, congratulations!

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Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6261 on: 01/12/2009 04:52:41 »
demo, have a question for you. what medications to do you know of to help prevent NE's. on the case study, they talked about hormone manipulation to reduce ne's.

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6262 on: 01/12/2009 05:21:50 »
Goingcrazy - so your derealization lasted 24/7 for a year?

Yes, I remember just sitting at my desk in college just thinking what the heck was wrong with me.  I felt like I wasn't there, had blurry vision, etc. all the symptoms of derealization.  I'd sleep about 14 hours a day, wake up and still feel not alive.  It wasn't 24/7, but it was more there than not.  Idk , the whole symptom is really weird and can result from a lot of stress which I did experience for about a 2 year duration. 

If I were to describe my derealization it would be like an actual cloud sitting in the front of my head, frontal lobe.  Like I actually felt something behind my eyes that I thought needed to come out.
« Last Edit: 01/12/2009 05:25:52 by goingcrazy »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6263 on: 01/12/2009 06:14:41 »

demo, have a question for you. what medications to do you know of to help prevent NE's. on the case study, they talked about hormone manipulation to reduce ne's.


Laurac, the only thing I recall is a mention here and there of antidepressants possibly slowing down/curtailing desire, which in turn would affect NE's.

According to wikipedia, "Although purported treatments to help prevent or diminish nocturnal emissions are available in abundance, none are known to have undergone any kind of rigorous experimentation or approval process"

Personally, they have plagued my POIS life, and the only NE subsiding that I found was (1) depression and (2) aging!

I POIS forum-googled "medication NE", hopefully there might be something useful there?
http://www.google.com/search?hl=en&q=medication+NE+POIS+site%3Ahttp%3A%2F%2Fthenakedscientists.com&aq=f&oq=&aqi=
 
« Last Edit: 01/12/2009 18:06:44 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6264 on: 01/12/2009 06:48:40 »

EDS, with your new POIS treatment, do you find that some episodes are inexplicably...not so good?

This one right now is that way for me. And it's inexplicable because I thought if I did this...did that...well, this time, I thought I allowed enough time to lapse between episodes. But it's now Day 2 and it's lingering. Most of the time, it's 90% - 95% POIS-free, but now and then....

Mood-and-events might be an explanation. I might have to go back to the ol' diary.

Strange!
« Last Edit: 01/12/2009 06:50:52 by demografx »

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Offline POIS-SUFFERER

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6265 on: 01/12/2009 07:30:39 »
I have a question - does anyone's symptoms actually become worse as the days progress, until the day they finally disappear?

Oh yes.... sometimes I think I am not going to get symptoms, and then, pow, got them bad and for days, typcially 10 till it starts to lessen....

Where do you hale from MR_C? I am a "frost bitten Canadian boy" too and if your around 45 you might get the reference to that term in song....

PS.

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Offline POIS-SUFFERER

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6266 on: 01/12/2009 07:33:14 »
I have another question for everyone - does anyone experience "derealization" during a POIS episode?

Again bingo.... altered state, de-realization, massive anxiety, headaches, brain fog, you name it..... I get it.... and it gets worse each time, starting to get scary.

PS.

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Offline POIS-SUFFERER

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6267 on: 01/12/2009 07:37:08 »

FORUM DECORUM - Please read.

Yep, thats us! :-)

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Offline Mr_Canadian

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6268 on: 01/12/2009 17:28:04 »
Pois-Sufferer -

I'm from Southern Ontario, and definitely frost-bitten.

To everyone -

1) During POIS, if you release again, do you feel a weird chemical feeling in your head, and/or an instant sickness in the bowels?

2) During POIS, when you listen to powerful music that really arouses the emotions, do you feel any strange chemical feelings in your head, as if the music is overloading the brain?

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6269 on: 01/12/2009 18:21:55 »

Z_one, if you want to see more testing data from my pre-and-post-POIS-treatment results, just let me know. I got lazy on my last post, but I now have more energy since this is Day 2 [;D]

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Offline POIS-SUFFERER

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6270 on: 01/12/2009 18:48:57 »
Pois-Sufferer -

I'm from Southern Ontario, and definitely frost-bitten.

To everyone -

1) During POIS, if you release again, do you feel a weird chemical feeling in your head, and/or an instant sickness in the bowels?

2) During POIS, when you listen to powerful music that really arouses the emotions, do you feel any strange chemical feelings in your head, as if the music is overloading the brain?

I think this is all part of the surreal feelings I think a lot of us get... I listen to loud music and really get into it, and sometimes it a little almost exhausting....

I do not get any bowel issues typcially..... would not say never but its maybe 1-2% if any.

Now that said I just O'd 24hrs ago... and very little POIS, odd, I need to see what vitamin cocktail I have been on as of late!

PS.

MR CAD... I am southern too think they call it south-east, in the "valley" as they say around here.....

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Offline prism

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6271 on: 01/12/2009 23:26:50 »
Hi everyone,
im 30 & suffered from pois since my teens - all the familar symptons.

I have never gone down the drugs route but have had some success with the Alexander Technique. I've going for about 2 years and it HASNT cured it but things just keep getting better and better.

Alexander Technique definitely alleviates pois symptoms.

Its not massage or physio -its pretty unique really, all the instant effects are the opposite of pois symptoms, costs about 30 a go.
it releases your neck/ muscles/nervous system. I would try a couple of different people first, they're some better than others, then if you like carry on.

After about 4 months of going to Alexander technique (and some reflexology too), I managed to figure out the root psychological reason for my problems. When I was a child I had to have an undescended testicle lowered. Obviously at the time the raw pain went away but, unknown to me for all thoses years, the 'fear of pain' never went away. I was subconciously 'gripping', holding and flinching all thoses muscles around that area. Sort of over-protecting myself. This had a long time effect on my posture and muscle strength/health. I was always uneasy when in bed with a girl, esp when she went to touch them. (effecting sexual performance too). I would even wince a bit when i touched them, not that i would anyway. fear of any zap of pain. Unbelievably looking back, I though it was normal! Its definitely not normal, theres no reason why I should tense up at ALL like that. As I was tight, when I had an orgasm all of thoses muscles contractions would send my body 'skew-riff' for a few days causing pois symptoms.
I realise I had to learn to relax- to release those muscles.
Its taken a long time, its hasnt been easy for me emotional facing that fear, & changing my longterm postural habits, but the difference its made my life is marvelous, effecting happiness, posture, muscles and sexual performance. It is my opinion that you only need very little bit of flinching during an orgasm to cause pois type symptons.

I read Mantak Chia 'Multiple orgasmic man' book. to be honest even when theres no ejaculation there still will be some tightness if your muscles arent released(obviously not as much as when you ejaculate), which is why i think about the alexander technique more.

Also read about what Wilhelm Reich said about childhood hangups, orgasms and muscle rigidity. google 'orgasm reflex'

Thanks for listening. I would be very, very interested if anyone out there can relate to my testicle/fear of pain problem ???
can everyone out there totally relax when someone is about to touch your testicles lol ???

Cheers
dave

« Last Edit: 03/12/2009 01:06:52 by demografx »

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Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6272 on: 02/12/2009 02:40:14 »
Here's an old case that sounds like POIS.  The doctor tried prescribing OTC supplements.  The first supplement looks like a standard vitamin with to much vitamin E (it's fat soluable).  The second is 5-HTP.

http://www.herballove.com/article.asp?art=191
« Last Edit: 02/12/2009 02:43:42 by Limejuice »

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Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6273 on: 02/12/2009 02:51:08 »
Hi John,

Several months back you reported success from POIS symptoms.  Are you still successful?

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6274 on: 02/12/2009 03:21:40 »

Here's an old case that sounds like POIS.  The doctor tried prescribing OTC supplements.  The first supplement looks like a standard vitamin with to much vitamin E (it's fat soluable).  The second is 5-HTP.

http://www.herballove.com/article.asp?art=191


LJ, I've heard so many warnings about herballove and Dr Lin over the 3 years here, that I would be very, very careful about "the doctor" and his "prescribing".

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Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6275 on: 02/12/2009 10:44:12 »
LJ,
Quote
Hi John,
Several months back you reported success from POIS symptoms.  Are you still successful?

I certainly did have POIS-free NEs back in the spring, but then later I did experience mild symptoms on one occasion. Since then I have not had any further NEs and I am still chaste. I still can not explain any of it, but I am intrigued by the possibility of low magnesium, as suggested by Mr Canadian.

I have noticed that both cranberries and yogurt are good sources of this mineral. I have taken a couple of supplements this week and it has made an effect on my quality of sleep in that I am sleeping deeper, although I still wake in the middle of the night. The day after I took the first pill I thought that my double vision had improved. That is not the case now but still I am hopeful that this mineral might do me some good. I am not going to take it on a steady basis as I felt slightly drugged after taking the two @ 100mg. Maybe every week I will take a half tab or two. Another reason why I suspect I could be deficient in this is that I have always had pronounced PE, and there are claims that low magnesium levels can do this. It would be great to kick that problem too.  [:)]

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Offline Mr_Canadian

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6276 on: 02/12/2009 14:33:13 »
LJ,
Quote
Hi John,
Several months back you reported success from POIS symptoms.  Are you still successful?

I certainly did have POIS-free NEs back in the spring, but then later I did experience mild symptoms on one occasion. Since then I have not had any further NEs and I am still chaste. I still can not explain any of it, but I am intrigued by the possibility of low magnesium, as suggested by Mr Canadian.

I have noticed that both cranberries and yogurt are good sources of this mineral. I have taken a couple of supplements this week and it has made an effect on my quality of sleep in that I am sleeping deeper, although I still wake in the middle of the night. The day after I took the first pill I thought that my double vision had improved. That is not the case now but still I am hopeful that this mineral might do me some good. I am not going to take it on a steady basis as I felt slightly drugged after taking the two @ 100mg. Maybe every week I will take a half tab or two. Another reason why I suspect I could be deficient in this is that I have always had pronounced PE, and there are claims that low magnesium levels can do this. It would be great to kick that problem too.  [:)]

John21 - did you have a stressful life prior to your development of POIS?

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Offline prism

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6277 on: 02/12/2009 15:02:12 »
yeah, but Alexander Technique definitely isnt a massage. I describe it as the physio Ive always dreamt about. Its an postural re-education technique which is great for instant relief during an pois episode AND a long term solution.

Ive gone from 2-3 days of post orgasm hell,
to a few hours recovery, with very mild discomfort-

it's something I am now, finally, in control over.
and as things continue to get better too, I feel in 2010 I will use the 'cured' word-but I'll keep you posted on that one!

Learning the Alexander Technique has been the most rewarding thing Ive ever got into.
I strongly recommend everybody on this thread dedicate themselves in becoming an expert in the Alexander Technique. It will change your life.

I fear that most on this thread are on a wild goose chase to find the magic cure-all pill or combination to solve their pois.

Unfortunately, there will never be a pill that can stop long term bad muscular habits. However, I still say try everything- pills, therapies, never stop the search to change, find out as much as you can about your bodies & if you're going to look into the Alexander Technique book 2/3 different teachers to find the best one.

all the best,
daveyboy
 



« Last Edit: 02/12/2009 20:27:16 by daveyboy »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6278 on: 02/12/2009 21:21:13 »
daveyboy, welcome to the POIS thread of The Naked Science Forum.



That was very interesting to read your post, because I had the same procedure done in childhood, but I don't remember at what age. I also am not aware of any conscious "fear" in that part of the body, probably because I was too young. But very recently, (what a coincidence!), after putting it off for many months, I finally made a special visit to my urologist because I noticed and was concerned that during sex, my left side would 'move upward' - and my imagination was starting to take over, feeling that it might one day "go ALL the way up and through"...if you can understand what I mean. The urologist assured me it was all normal; because of physical tension, testicles do move up during sex, then they go back to normal afterwards. I think it was the opposite side from the childhood problem. The doc said it had nothing to do with my childhood procedure. So, no more worries, now or from before.

For the last year, I found a 90% POIS cure: daily testosterone patches (the main cure component), plus, immediately at POIS onset, take "extra" (double the normal, non-POIS dose, but only once, at POIS onset: Adderall (prescribed for ADHD), and coffee. The latter two are minor players, but they do contribute. There are limitations: frequency has to be monitored and within certain limits, and mood + external events can affect a particular episode. So it ranges from 80% to 95%. Usually symptoms are mild now for the first 6 - 12 hours vs. severe, agonizing symptoms for 4 days for the last 30+ years! I look forward to reading more about your experiences. Thank you for coming forward and sharing them!



Here are some POIS resources which may be helpful to you:

Our new POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:
http://www.youtube.com/watch?v=UWBxAUC9k1g

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here. This will also enable us to work more easily with outside researchers by having more organized data available about us:
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only study on POIS by Dr. Marcel Waldinger,MD and Dr. David Schweitzer, MD.

There are 2 ways to get it: (1) if you want a PDF copy, send me a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and I'll send you back the PDF. Or, if you prefer, (2) I can simply reply with a Private Message (no regular email needed) and provide you with a simple text version embedded in your PM.

To send a Private Message, click on "Messages" at the top of this page. At the Messages page, click on "New Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.

Remember to put a quote around my name, i.e., "demografx".


New York Times article,

January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

In addition to serving our own informational interests, the resources listed above can be useful for you to show the medical world - which often shows little understanding and is sometimes skeptical of our condition - that POIS has scientific underpinnings and that POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapist community. This can help fight the immediate reaction of some: IT'S NOT "ALL IN OUR HEADS"!

Also, it can be helpful when dealing with medical professionals to point out the successful existence of our rapidly growing forum for nearly 3 years, which has attracted over 150 POIS sufferers worldwide who have posted here, plus nearly 500,000 page visits. Not bad for a rare malady!
« Last Edit: 03/12/2009 03:18:03 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6279 on: 02/12/2009 21:22:07 »


daveyboy, this post will help you find information about POIS that we have already discussed, by tailoring a Google search to this forum:


SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: over 2 years' worth of posts from 150+ Forum members, and an additional 150 POIS sufferers found on the Internet, but not on this forum.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://www.thenakedscientists.com/

for example, I tried
demografx POIS site:http://www.thenakedscientists.com/

and 1,000+ results came up for "demografx" within the Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.

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Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6280 on: 02/12/2009 21:47:17 »
Mr. CDN,
Quote
John21 - did you have a stressful life prior to your development of POIS?

I don't recall my childhood being particularly stressful. Perhaps unhappy, but not stressful.

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Offline Pablo445

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6281 on: 02/12/2009 21:53:23 »
daveyboy / demografx

I had an hernia/hydrocele procedure as a kid and I often wondered if I was not left with some fear tension in that part of my body. But I had a very normal and pleasant sex life for many years afterward. Last August I had to go under the knife again (48 years later) because the hernia was coming back. I had no pain but it was highly recommended to do it for preventive measure. Well it still has not healed properly (still have a little bit of pain in the testicle) at I swear the POIS problem is much worse since then. I have been thinking it is related to the stress associated with the surgery but now I think it may have to do with "tension" in that area. During the summer I was feeling great and my POIS symptoms were were down to feeling slightly irritable and spaced out for one or two days. No anxiety, no depression, nothing else. Very light symptoms I could easily live with. But since the hernia surgery, it is full blown. I so regret having the surgery procedure. Now I feel I am back to square one. Again. I am really bummed out about this.

Years ago I did some Alexander technique for several months. It just was not for me . I tried Feldenkrais and liked that much better. But your post made me want to explore that kind of avenue again. There is an excellent school at less than 5 minutes from my home.

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Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6282 on: 02/12/2009 22:40:14 »

I think you should try doing testosterone too when you in pois, my lh is not as low as yours but in lower bracket. In pois my testosterone is way lower than recovery stage.

Thanks for this suggestion CCconfucius. I'm having more tests done though not testosterone this time. It would be worth investigating though I agree. I'll post if anything shows up. And actually negative (normal) results can be important too when it comes to ruling certain things out so I may give a full run down. I'm away for a few days but should be able to post more next week.

Thanks too to PRZ and Pablo for taking so much time to detail your techniques for us - interesting stuff. Whilst I think it isn't technically a cure unless longterm use of the technique somehow changes the practitioner so that they no longer experience POIS symptoms even with ejaculation, if the technique can be mastered, it does seem a powerful way of managing POIS and satisfying natural urges without the crash.

Derealization? - yes I definitely get it though not as severely as I did during my first few years of POIS. For me it is a feeling of being detached from reality. The description of being behind a pane of glass is a great one - I can definitely relate to that.

On magnesium: If you google it there are a lot of websites listing magnesium-rich foods. Here are two that i had time to look at:
http://www.ctds.info/magdiet.html
http://www.vaughns-1-pagers.com/food/magnesium-foods.htm

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6283 on: 03/12/2009 00:31:14 »
I notice that POIS symptoms are generally at its very worst when having to deal with stress at work.  They are also terrible if you do not get enough sleep.  Anybody else like this?

For the MRI results, I found out Monday that there was absolutely nothing wrong, no tumor, nothing.  That rules that out but still anything microscopic that isn't detected by the mri could be lurking...


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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6284 on: 03/12/2009 00:34:58 »
Pois-Sufferer -

I'm from Southern Ontario, and definitely frost-bitten.

To everyone -

1) During POIS, if you release again, do you feel a weird chemical feeling in your head, and/or an instant sickness in the bowels?

2) During POIS, when you listen to powerful music that really arouses the emotions, do you feel any strange chemical feelings in your head, as if the music is overloading the brain?

1) Yes of course I have a weird chemical feeling in my head, everytime.

2) This may sound weird but I notice that if I listen to powerful music I am in a worse mood than if I don't listen to music at all, or calm music.  I think it's part of an adaptation thing, listening to heavy metal would make me crazy, listening to titanic would make me sad, etc.  So I'm actually trying not to listen to music at all

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Offline Pablo445

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6285 on: 03/12/2009 00:50:45 »
I notice that POIS symptoms are generally at its very worst when having to deal with stress at work.  They are also terrible if you do not get enough sleep.  Anybody else like this?
Yes definitely - any kind stress makes it much worse. Which is why I think POIS is basically a stress reaction and if added to another stress it multiplies the hormonal depletion effect. I have noticed that if I am on vacation without any stress POIS does virtually disappear. Not getting enough sleep is also a stress on your body. Even strenuous exercise is a stress. Etc.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6286 on: 03/12/2009 03:13:30 »

I second goingcrazy's and Pablo's sentiments!

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Offline prism

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6287 on: 03/12/2009 15:15:42 »
Thanks for the nice welcome,
will defintely do all the surveys and check out all the websites.

wow, what demografx and pablo said about childhood operations shook me.
It could be nothing but keep it on your mind. You say you cant notice any fear, i wouldnt expect any instant observations like that, it takes alot of self-study.
+ It would be a miracle if you got the 'answer' through via one forum entry!

Yeah, Feldenkrais is meant to be good- similiar to Alexander Technique I believe, dont give up on it, check out some different Alexander Technique teachers too. What I have found is that although it is well regulated some werent 'good' enough to release my body fully when I was going through a bad pois spell.

I have tried so many different therapies, because although alexander technique is great, i found it slow when dealing with my orgasm problem.
I tried Acupuncture (mixed feelings on it), Biofeedback (good to see my ill health recorded on a 3D man/computer screen but not much good to solve the problem imao), Bowen Technique, Active Release Therapy (wouldnt recommend it), Yoga, Pilates (ouch!), MRI (waste of money), physio (not good), chiropracters (like physio not my bag).

None of them, in my opinion, compared to Alexander Technique (A.T) though. But as I said before- try everything all pills, try all therapies!

What I realised whatever therapy you do, its how it gets to root psychological problem which will do it. Now I'll try and explain that in more detail because I know its a tricky subject.
What really surprised me after many A.T lessons was how the mind does interlink with the muscles/body. I used to think that 'mind/body connection that women go on about' a load of old crap but it is so true.
A.T is brilliant at enabling you to detect very very slight changes in muscular tightness. After many lessons you get to realise its actually our thoughts that are causing the problems. If even you dont have any major breakthroughs after lesson you do get more and more movement/relaxed body, it feels real good, you do constantly improve.
I believe that you've got accept that its our thoughts/memories/fears that is causing this orgasm health problem (google 'Wilhelm Reich orgasm reflex' too)... and THAT is the way out of this mess.
If you start analysing your body, in the sense, try and constantly think 'what makes me flinch?', 'What makes me hold myself?'. Its possible (with A.T anyway) that you may get a feeling what thoughts/feelings tightens you. Then you think of the same feeling again that tightened you, BUT this time you try not to tighten and remain relaxed. The chances are you will for a split second not tighten, then you tighten again as normal. But it is in that split second of refusing not to tighten that a muscular release occurs. Over time the thought/s become easier and easier to relax 'through'. Once you start relaxing/breathing/moving 'through' these fears/feelings your body will become so much more healthier and posture improves. An orgasm, as we know, is very punishing if tightness is occuring.

Now all of this will be meaningless without A.T lessons. 
BUT read this all again after several lessons of A.T.

For me, I realised the childhood operation was the root problem. I noticed I tightened alot when thinking of the operation & when thinking about my left testicle. A.T gave me higher 'sensory preception' that could sense 'the cold-like' strip of muscle that was too tight was linked to that memory. So then I had to face-up and start letting go and these fears. It involved simply thinking of my testicle without flinching/holding. To begin with it was impossible. Then I kept trying, slowly I could think of it for say 1/4 second without flinching, a muscular release would occur, and so on and so on until no fear is there.
By doing this, it dramatically changed my posture/orgasms/health.

I came up with this 'tapping test' type thing. This is NOT the alexander technique though. I would lie on the floor and imagine a doctor or someone randomly proding my body, in random spots. I noticed simply the thought of where he might go tightened me up in certain ways. I realised this is totally irrational and all related to my 'fear of pain' around my testicle. Again, over time, I would learn to allow this imaginery person to prod wherever with no tensing.

Once I was in the office and this secretary went to 'jab' me in the ribs, I noticed I flinched and jumped like crazy. Again, it all relates to the fear of pain imbedded in my mind since childhood.

Over time, I then (at home!) started tapping my testicle in (a non sexual way) an attempt to stop the flinching around my body. To start with impossible-I held my shoulders, hips tight etc. but, now months later, very easy, no fear, no tightness, no zaps of pains. I wouldnt recommend doing this too much of this because it does tighten you up temporarily and can, lead to being turned-on etc.

Unbelievably, when read in Mantaks Chia's Multiple Orgasmic Man this tapping testicle technique is a way of his to learn to be multi-orgasmic.
(Also I would add, I wouldnt recommend trying the technique described in this book until ALOT of A.T.
It does say you must learn 'an internal art first')

The other therapy I would recommend is Reflexology, but prehaps after you've already gor some idea of what A.T is about.
In a way, it is the same as Chia's tapping idea.
The language they use is a bit wishy washy but it does work and they are right what they say in relation to the area that wrong with you.
The thing about reflexology I found it tended to (temporarily) tightened me up- almost like a mini pois. However the next day recovery felt better and more easier to do my alexander technique releasing.
What I found it kind of exposes to all your fears. Its raw, right on the nerves & its very intense to begin with, but gets easier.

You could do what I would call the reflexology test. Just go for one session. Notice how much tensing and fear is held during the session. relate it to the kind of thoughts that maybe tightening you up during everyday life. reflexology does speed up the Alexander technique learning process, for me anyway.

What I would say that you will probably after lots of any therapy attempt to have an orgasm to see if the pois has gone.
from my experience The golden rule I came up with is:
If you 'wondering' if the POIS is still there,then it IS still there.
It will only be gone when YOU KNOW its gone- you will be in control of it, completely, this takes time, patience, you will get frustrated, but stick to whatever you know is working.
To attempt to use the alexander technique (on your own i mean) during a heavy pois episode is difficult because its kind of too late by then, all of thoses contractions have already happened, its got to be before and during an orgasm when you stay 'balanced' - it does get easier and easier, it will all come together once the visualisations of the 'difficult' parts of your body become easier to visualise and stay 'free/relaxed' through it.


Demo, mate, I cant answer that testicles going up thing, except that they should both be relaxed and 'feel' like they are hanging loose, so to speak. Both should act the same.

One more thing, its a good chance no-one will relate to any of this entry at all. Everybody will go through their own journey to recovery. Accept the fact you may need to spend some money to solve it. + Dont get obsessed with testicles! That was my problem, yours will be different.
But I would say, recovery is definitely possible for EVERYBODY.
If I can do it, anyone can.

 
« Last Edit: 05/12/2009 14:10:45 by daveyboy »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6288 on: 04/12/2009 03:41:57 »

daveyboy / demografx

I had an hernia/hydrocele procedure as a kid and I often wondered if I was not left with some fear tension in that part of my body.


Hernia procedure for me, too, as a kid.
« Last Edit: 04/12/2009 03:45:58 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6289 on: 04/12/2009 03:56:58 »
Testosterone risk

As some of you know, I have gotten great POIS relief from wearing testosterone patches daily.

Z_one, and others have pointed out (as I have, too) that there is a risk that your body will shut down its own testosterone production in the future with this type of treatment.

Discussing this with an endocrinologist, in my opinion, is your best bet, if you have any interest in pursuing this type of treatment.
« Last Edit: 04/12/2009 04:00:42 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6290 on: 04/12/2009 04:05:37 »

Demo, mate, I cant answer that testicles going up thing
 

Thanks, but there was nothing to "answer". As I wrote in your welcome, my urologist's reassurance that all's well is all that I needed.
« Last Edit: 04/12/2009 05:21:23 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6291 on: 04/12/2009 04:42:02 »


I fear that most on this thread are on a wild goose chase to find the magic cure-all pill or combination to solve their pois.


I respect what you found with AT for your own form of POIS, but I think it's unfair to characterize the pursuit of chemical treatment of POIS as "a wild goose chase".

The science of orgasm is in its infancy. But already, science has found a huge chemical underpinning of orgasm. As Dr Marcel Waldinger, the pioneering POIS physician, found in his 2002 classic, first-ever study of POIS: "Orgasm is characterized by a symphony of neurobiological and psychological interactive processes, of which most parts are still unknown. It is possible that subtle changes in these processes are responsible for a number of disorders and discomforts pertaining to sexuality."

Dr Gert Holstege, a neuroscientist, has studied brain activation and orgasm in volunteers with PET scans in 2003 and he and his scientific team continue to study it today:
http://www.jneurosci.org/cgi/content/abstract/23/27/9185

As it becomes increasingly likely that hormonal activity, neurotransmitters and the like are involved with POIS, as we have studied and reported extensively here at the forum for the last 3 years, it stands to reason that chemical treatment, in the form of "the magic cure-all pill or combination to solve their pois" as you write, is a very strong and reasonable path to pursue. 

Lastly, a number of people on this forum, and other POIS sufferers found elsewhere on the internet, both groups' reporting 300+ individual POIS sufferers' experiences, compiled by this forum's B_Jim, have found varying degrees of POIS relief successfully through the use of treatments of this kind.
« Last Edit: 04/12/2009 08:15:08 by demografx »

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Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6292 on: 04/12/2009 10:33:40 »
The magnesium that I took had somewhat of a backlash later in the week. Initially it was very calming, and I slept deeper. But as it wore off I experienced minor "withdrawl" symptoms: mild anxiety and a mild pain in my gums. I'm thinking that I will try to eat foods high in magnesium vs taking the supplement. I imagine minerals are synergistic, and taking a big dose of one might not be the best. Then again, maybe it could be a good in-POIS emergency pill (in a very small dose).

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Offline prism

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6293 on: 04/12/2009 15:10:41 »
I appologise about the 'wild goose chase' comment & if it sounded too negative.
It is not my intention to deter people searching for adequate drugs (hence 'try all the pills, try all the therapies comment!)
It was more a reaction against my disappointment that in the pages I have read so far in this thread (although as yet nowhere near all 266 pages), I havent read about anyone experimenting and investigating the many excellent therapies out there.
I, personally, have lost faith in western medicine, but I guess faith in anything can change either way very quickly.

A combination of "Patience", Reflexology and Alexander Technique was my winning formula.
Remove any 1 of the 3 and it makes it more difficult.

Every week, I was having reflexology on Tuesdays and Alexander Technique on Fridays.
I decided to move back to my parents to be able to afford it so I didnt even need to get a saturday job. I thought forget the money, this is working- and much, much more important. I do regret ignoring and dismissing reflexology for so long however.




 
« Last Edit: 04/12/2009 16:02:15 by daveyboy »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6294 on: 04/12/2009 19:24:27 »

Thank you, daveyboy. Actually, you can read about a fair amount of experimentation here at this forum with alternate therapies, including Eastern, TCM, etc., if you Google-search the forum. Sadly, we (including myself) haven't seen much in the way of results. So thanks again for shining a bright spot in that area!
« Last Edit: 05/12/2009 00:27:01 by demografx »

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Offline prism

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6295 on: 05/12/2009 02:03:59 »
(Sort of) Random question:
Does any one suffer from Paruresis? This is a term for 'Shy Bladder Syndrome', which basically means not being able to going at the urinals and need the cubicle. (in really severe cases Ive heard of people not being able to go at all in public toilets).

This is the other problem I have had, along with ED,
All are tension-based problems in the 'urology department'.
During a POIS spell I wouldnt dream of any trying to go at the urinal because it feels tight and I'll know I'll have no control. It wont come out unless Im more relaxed in the cubicle!
Nowadays during a non-pois spell im fine (with ED too).
« Last Edit: 05/12/2009 14:04:13 by daveyboy »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6296 on: 05/12/2009 05:13:18 »

Does any one suffer from...'Shy Bladder Syndrome'?


Very mild case of it. Not usually enough to drive me to the cubicle, except....on occasion.
« Last Edit: 05/12/2009 05:15:44 by demografx »

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Offline Porke

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6297 on: 05/12/2009 10:23:40 »

1) Yes of course I have a weird chemical feeling in my head, everytime.


Yup, right on the money. Headachy, chemical hangover feeling - very heavy.

I am looking into boosting dopamine again. The whole, low dopamine, high prolactin makes sense to me. I am going to try some Mucuna first, but I dont have any faith in the herbal/natural products. I am checking out parkinson related meds - which specifically boost dopamine. Not for long term use, but only the day after maybe. Something like Deprenyl, or Sinemet.

@DemoGrafx - do you realise that testosterone also boosts dopamine in the brain. Something I have read on a few occasions. Just throwing it out there as a possible 2ndary effect.

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Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6298 on: 05/12/2009 11:38:07 »
Daveyboy,
Quote
Does any one suffer from Paresis? This is a term for 'Shy Bladder Syndrome', which basically means not being able to going at the urinals and need the cubicle.

Yup, if there is someone else beside me I can not go unless I really have to go. If someone walks up beside me before I am able to start I often flush the urinal and fake going, then try again later. Because of this I prefer stalls. Who designs these bathrooms such that guys are forced to pull out their privates next to each other without dividers? Even if there is a divider I often can't pee. This issue has caused anxiety for me over my life when going to a public washroom with someone I know, like back when I used to go out to bars with friends. I didn't know that it had a name, Paruresis.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6299 on: 05/12/2009 15:43:05 »

I, personally, have lost faith in western medicine, but I guess faith in anything can change either way very quickly.


You're not the first one here to say that, but if you are in the Emergency Room, and critically ill, would you call in a Reflexologist?  [:)]
« Last Edit: 05/12/2009 15:49:01 by demografx »