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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6432017 times)

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12750 on: 11/04/2011 22:52:10 »

CC, I will be at a fertility clinic day after tomorrow (Tuesday).


don't forget to wash your hands, you never know what might be on the door knobs.


Seriously?

After all the tests you're gonna have to make, you're going to end up sentimentally attached to all the nurses on the ward.

The hormones are going to burn a "mate image" into your brain. For your sake, I sure hope that the reception person is a woman!

You're gonna have to bring them little costumes and stuff so that you can get in and out in a decent time. After about the fifth test, you could be in there for hours.

You'd come out like Jim Carey in the movie with the shark. After closing the door, Do NOT go in there!


 
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12751 on: 11/04/2011 22:55:21 »

After all the tests you're gonna have to make, you're going to end up sentimentally attached to all the nurses on the ward.


I'm more concerned about getting sentimentally attached to the specimen container!! ;D

Mrs. Demografx: "Demo, what is that you're putting under your pillow every night now???"
 

Offline demografx

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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12753 on: 11/04/2011 23:14:43 »

After all the tests you're gonna have to make, you're going to end up sentimentally attached to all the nurses on the ward.


I'm more concerned about getting sentimentally attached to the specimen container!! ;D

Mrs. Demografx: "Demo, what is that you're putting under your pillow every night now???"

At least you don't have to buy it dinner, or send it flowers... It won't leave messages on you cell phone nor "forget to take the pill"

heh, heh, eet belong to Gollum it does!!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12754 on: 11/04/2011 23:18:33 »
Wow! I'm getting 2, then! (container-mistresses)!



(Becky and Jenny ;D)
« Last Edit: 12/04/2011 20:18:08 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12755 on: 11/04/2011 23:42:40 »
Demo T/P Update


Hurray, I'm choosing BEFORE+AFTER based on your post, and also daveman's at SMF, edit: and CCconfucius. Also, lauracostis just email-recommended me to do both as well if affordable! SO I'm glad I held off!

Thank you, everyone!!



17 more hours till I submit semen sample + 3 more days for results.

And tomorrow, I will start T/P treatment, right after I say goodbye to all my new friends at the fertility clinic  :)

Cross-posted at SMF (Male Contraceptive Methods - Auto Immune)
http://72.52.181.21/POIS/index.php?topic=19.msg251

« Last Edit: 11/04/2011 23:46:35 by demografx »
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12756 on: 12/04/2011 05:03:12 »
Somebody had a link to dr bersteins website for the procedure to go through inorder to see him for rush dessensistization. i was wondering if that person can post that link again.

Even if he does not do dessensitization on a pois sufferer it will be cool if he can just test the semen protein and chemicals as he does for women with semen allergy.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12757 on: 12/04/2011 07:01:43 »

Somebody had a link to dr bersteins website for the procedure to go through inorder to see him for rush dessensistization. i was wondering if that person can post that link again.

Even if he does not do desensitization on a pois sufferer it will be cool if he can just test the semen protein and chemicals as he does for women with semen allergy.


Dr. Jonathan A. Bernstein

Title:   Professor of Clinical Medicine   

Street:   8444 Winton Road

City:           Cincinnati

Area:   45231

Country:   USA

Organization:   
   Bernstein Clinical Research Center, Department of Internal Medicine, Division of Immunology-Allergy

EMail 1:   
jonathan.bernstein@uc.edu   EMail 2:   

URL:   http://intmed.uc.edu/global_tpl2.cfm?SecId=FACULTYSTAFF&SubId=BioDetails&PageId=ALL&FacultyID=51

Services:   Has studied semen allergy - possibly will test and treat. He is open to the possibility of males being hypersensitive to their own semen. Note that Dr I. Leonard Bernstein ( also at the Bernstein Clinical Research Centre) has also been involved with a

Phone 1:   
513.931.0775

CC, and everyone,  bookmark our new POIS Collaborators' Site:
http://72.52.181.21/collaborator_list.php

Thank you, Martin and Daveman, for great POIS database work!!!
« Last Edit: 12/04/2011 07:13:47 by demografx »
 

Offline Green

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12758 on: 12/04/2011 10:42:48 »

Green, 1% is not rare? What's your definition of rare? (Mine is "not well done or medium"  ;D - sorry I couldn't resist, I love rare cooking of some meats)

If you can forgive the silly humor, I'd appreciate knowing, Green.

Haha,

Let me try and explain the best I can, given I'm in POIS again :(

If we use 1/100 as a percentage = 1% of the population are POIS sufferers

[1] - Hypogonadism affects up to 4 million American men
[1] - Male Hypogonadism. Part I: Epidemiology of Hypogonadism - AD Seftel

Population of US - 311,148,000

(4,000,000/311,148,000)*100 ≈ 1.28% of population, hypogonadism is not usually classed as a rare disorder and it's prevalence on the internet is quite common.

Pair that to how many people we have on the forum that have dropped in and said they suffer from POIS is quite a low number, I know it can be quite difficult signing up and posting about POIS when you're in POIS, that might deter other POIS sufferers from signing up and making themselves known, but I still think it'd be a low number.

Also everytime I talk about POIS to a doctor, I do ask how many people they recall exhibiting the same symptoms, besides Dr. Goldmeier that answer is 0, considering how many Dr's I have visited (a lot, different countries too) and the area they cover, POIS is indeed rare.

I would put POIS at 0.001% - 0.005% of the population at the very most.

Have fun at the fertility clinic today ^.^
« Last Edit: 12/04/2011 10:44:57 by Green »
 

Offline Vandemolen3

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12759 on: 12/04/2011 11:39:06 »
Did anyone tried an injection with Triamcinolone (Kenacort A)? That's an injection against hay fever and other things. It helps 3 months against hay fever. Maybe it will relief the POIS-symptoms a bit. And if not it will help against hay fever. I think a lot of POIS-patients have hay fever. You only need 2 of this cortisone shots.
I don't know what the effect is with my desensitization against POIS. But I will ask it the next time.
 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12760 on: 12/04/2011 13:25:15 »

I would put POIS at 0.001% - 0.005% of the population at the very most.

Have fun at the fertility clinic today ^.^

Well any of these guesses are just that I suppose. Only time will tell.

There's already a big difference in perception and awareness since 4 yrs ago, and eyes are just opening.

The world is just recently puting on their glasses! How much more are they going to see?

 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12761 on: 12/04/2011 16:36:03 »

Green, 1% is not rare? What's your definition of rare? (Mine is "not well done or medium"  ;D - sorry I couldn't resist, I love rare cooking of some meats)

If you can forgive the silly humor, I'd appreciate knowing, Green.

Haha,

Let me try and explain the best I can, given I'm in POIS again

If we use 1/100 as a percentage = 1% of the population are POIS sufferers

[1] - Hypogonadism affects up to 4 million American men
[1] - Male Hypogonadism. Part I: Epidemiology of Hypogonadism - AD Seftel

Population of US - 311,148,000

(4,000,000/311,148,000)*100 ≈ 1.28% of population, hypogonadism is not usually classed as a rare disorder and it's prevalence on the internet is quite common.

Pair that to how many people we have on the forum that have dropped in and said they suffer from POIS is quite a low number, I know it can be quite difficult signing up and posting about POIS when you're in POIS, that might deter other POIS sufferers from signing up and making themselves known, but I still think it'd be a low number.

Also everytime I talk about POIS to a doctor, I do ask how many people they recall exhibiting the same symptoms, besides Dr. Goldmeier that answer is 0, considering how many Dr's I have visited (a lot, different countries too) and the area they cover, POIS is indeed rare.

I would put POIS at 0.001% - 0.005% of the population at the very most.

Have fun at the fertility clinic today ^.^

Fascinating! But then how severely restricted (or not) do you define POIS? Like the one-day POISers in the New York Times article? Howard Stern, who goes unconscious after orgasm for 10 hours?

And many thanks, Green, for the sober reflection (in POIS yet!) I made a stab at it, and you improved it greatly! I was really hoping someone would do that.

I'm at fertility clinic dropping off my sample, in POIS, sigh.
« Last Edit: 12/04/2011 20:17:08 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12762 on: 12/04/2011 18:01:38 »
And now I'm driving ($185 fine for texting + driving...."But I'm only posting, officer!!" :D ) to the pharmacy to pick up my T/P Rx!...in one hour it'll be a battle between T/P and my semen (and that nasty old POIS Bully!). Maybe CNN will cover this???

Stay tuned to see who wins!  ;D



« Last Edit: 12/04/2011 20:33:36 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12763 on: 12/04/2011 19:50:55 »

Demo T/P Update


OK, I just swallowed (gulp) my first T/P dose! (5mg of Aygestin (norethindrone), mfg. co. is Barr  - $49.17/month. For some strange reason, I was told insurance doesn't cover it for men  ;D

The progesterone is combined with my daily T dose which is normally 15mg, but I upped it to 30mg T this morning after producing a fertility clinic sample. And producing POIS. :)

The T-increase plus an increase in a bunch of stimulants (ADHD meds + caffeine + energy drink) helps me fight POIS Day Zero. Very successfully today, which I attribute to the "excitement" of this T/P adventure. Levitra might also have something to do with POIS abatement, but it's been a 4-year mystery because of the unknown T contribution in my POIS amelioration.

Again, please, this is NOT a recommended protocol for YOU! We're all different.

Cross-posted to SMF.
« Last Edit: 12/04/2011 20:37:29 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12764 on: 12/04/2011 22:16:33 »

I would put POIS at 0.001% - 0.005% of the population at the very most.

Have fun at the fertility clinic today ^.^


Well any of these guesses are just that I suppose. Only time will tell.

There's already a big difference in perception and awareness since 4 yrs ago, and eyes are just opening.

The world is just recently puting on their glasses! How much more are they going to see?



I showed our "rare-POIS-definition" posts to Stefanie at NORD and she offers the following:

From:        stefanie <stefanie@rarediseases.org>
Date:         April 12, 2011 11:03:19 AM PDT
To:             demografx
Subject:     Re: Post Orgasmic Illness Syndrome (POIS) - Naked Scientists Discussion Forum

Hi Demo,

(Feel free to post.)

Technically (according to NIH--the National Institutes for Health) a rare disease is one that affects less than 200,000 people in the US at a given time. This number varies outside the US, from country to country, depending on the population of the country.

There are disorders for which there are less than 50 reported cases throughout the world ("ultra-rare"), and disorders that were once considered rare (like multiple sclerosis,) which are now known to unfortunately affect many more than 200,000 people in the US. 

The severity of a disorder is not an issue regarding whether or not it is considered "rare." So, if some with POIS are symptomatic for only a few hours--or some for two weeks at a stretch -- ugh! -- this severity doesn't matter with respect to characterizing this or any  disorder as rare.

All the Google alert articles that I receive about POIS state that it is believed to affect one in 100 men -- but this statistic is not based on any real epidemiological studies to my knowledge. I don't know where they are getting that from. The POIS population has not been scientifically documented yet.

So -- at least for the time-being -- yes-- POIS is RARE!  





Sincerely,
 
Stefanie Putkowski, RN, BSN
Clinical Information Specialist
Research Program Administrator
National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968

Phone: 203.744.0100
Toll Free: 1-800-999-6673
Fax: 203.798.2291
email: rn@rarediseases.org
http://www.rarediseases.org


Join our online community
http://nord.clinicahealth.com/
 
NORD Subscription Service
http://www.rarediseases.org/programs/subscriptions
 
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Offline connor

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12765 on: 13/04/2011 04:41:24 »
anyone know treatments for people who suffer symptoms without ejaculation. any arrousal what so ever seems to put my body in dissaray. obviously this has nothing to do with a semen allergy, and i've read posts on here of people experiencing the same thing. most of the posts here focus on the allergy hypothesis so it's hard to find what i'm looking for
 

Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12766 on: 13/04/2011 07:34:25 »
anyone know treatments for people who suffer symptoms without ejaculation. any arrousal what so ever seems to put my body in dissaray. obviously this has nothing to do with a semen allergy, and i've read posts on here of people experiencing the same thing. most of the posts here focus on the allergy hypothesis so it's hard to find what i'm looking for
connor, the P/T contraceptive treatment, if it works may have the potential for working by alternate actions than just removing the sperm from are bodies(this is an alternate hypothesis to just the regular sperm allergy theory, and was the primary reason I thought of using P/T as a treatment).  It will stop a myriad of hormones that are associated with the production of sperm.  I believe that there is a possibility that these hormones are causing the reaction in our bodies; possibly something like "gonadotropin releasing hormone". these hormones are released after ejaculation to replace the sperm, I also believe that some of these hormones are preemptively released in response to arousal and stimulation in preparation of what the body believes will end in sperm loss to jump start the process of sperm production before ejaculation happens. 
Don't worry, if the P/T contraceptive works, there are a number of different possibilities why it is working besides just removing the sperm for sperm allergies. 
Another possible theory is based on the fact that both progesterone and testosterone can suppress the immune system.  Progesterone is one of the possible hormones in pregnancy that some believe is responsible for the immune system not attacking the fetus as a foreign invader in the body during gestation.  I am doing an obstetrics rotation right now and I have been told that autoimmune disease usually significantly improve during pregnancy and then return to normal afterward.
The P/T contraceptive is going to cover a bunch of bases at once.
« Last Edit: 13/04/2011 07:37:33 by lauracostis »
 

Offline Green

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12767 on: 13/04/2011 13:36:27 »

I would put POIS at 0.001% - 0.005% of the population at the very most.

Have fun at the fertility clinic today ^.^

Well any of these guesses are just that I suppose. Only time will tell.

There's already a big difference in perception and awareness since 4 yrs ago, and eyes are just opening.

The world is just recently puting on their glasses! How much more are they going to see?



Now that awareness has been raised, maybe it'll attract more POIS sufferers to crawl out of the woodworks.
 

Offline Green

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12768 on: 13/04/2011 13:47:18 »

Fascinating! But then how severely restricted (or not) do you define POIS? Like the one-day POISers in the New York Times article? Howard Stern, who goes unconscious after orgasm for 10 hours?

And many thanks, Green, for the sober reflection (in POIS yet!) I made a stab at it, and you improved it greatly! I was really hoping someone would do that.

I'm at fertility clinic dropping off my sample, in POIS, sigh.

Good job passing it on! That was an interesting reply, I wasn't aware of NORD's definition of rare, we are still far and away from getting an actual estimate of POIS sufferers but atleast out of us, on this forum are actively seeking new treatment methods. Atleast for the time being a medical community that recognises POIS is still treating it as a "rare" disorder.

And now I'm driving ($185 fine for texting + driving...."But I'm only posting, officer!!" :D ) to the pharmacy to pick up my T/P Rx!...in one hour it'll be a battle between T/P and my semen (and that nasty old POIS Bully!). Maybe CNN will cover this???


You can drive in POIS??? :o

Did it once or twice, will never attempt it again, cannot make rational driving decisions in POIS and my response time is low, not worth the risk.
 

Offline Green

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12769 on: 13/04/2011 14:00:04 »
anyone know treatments for people who suffer symptoms without ejaculation. any arousal what so ever seems to put my body in disarray. obviously this has nothing to do with a semen allergy, and I've read posts on here of people experiencing the same thing. most of the posts here focus on the allergy hypothesis so it's hard to find what I'm looking for

I've been suffering the same for a while, usually it's worse when you're out of POIS and have not been aroused for a while, it starts with brainfog? and some stomach pain?

I think it has everything to do semen allergy but more to do with the seminal plumbing, arousal is the precursor to ejaculating, my guess would be that those who have premature ejaculation(me) will also suffer from this, as there is involuntary control of seminal fluids leaking from the prostate, if I have been out of POIS for a while (2-4weeks) I find, after arousal I do get slight POIS symptoms, sometimes I have to lie down and rest, but the next time I go urinate I find at the end of my urine stream there is some white milky substance and it smells, I asked my GP and he agreed it is more than likely semen.

If there is some way to strengthen the prostate then that would cause the arousal symptoms to lessen. Working out, keeping fit and retaining a low body fat percentage has also gone a long way to combat some of the cluster of symptoms of POIS.
 

Offline Green

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12770 on: 13/04/2011 14:07:51 »
Daveman - Is it possible for you to add another topic on the other site? labeled something along the lines of "case profile or POIS personal log" etc... I would post there regularly, I would be interested in seeing what other people do on a day to day basis with POIS, the aim of the being to update regularly.
 
 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12771 on: 13/04/2011 17:46:19 »
Daveman - Is it possible for you to add another topic on the other site? labeled something along the lines of "case profile or POIS personal log" etc... I would post there regularly, I would be interested in seeing what other people do on a day to day basis with POIS, the aim of the being to update regularly.
 

The new format adapts to that quite well, Good point, the space is yours! ;)
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12772 on: 13/04/2011 20:29:45 »

Demo T/P Update !



-----Original Message-----

From:      Dr. G, M.D. [Demo's endocrinologist]

Sent:      Wednesday, April 13, 2011 9:52 AM

To:        demografx

Subject:   RE: Norethindrone + Semen Analysis


I have the [Semen Analysis] report.

Before [norethindrone] treatment you already have no sperm.

So the question is - did you have hypogonadotrophic hypogonadism with low testosterone AND low/no sperm BEFORE treatment with testosterone.

I would go ahead with the norethindrone anyway because of the coital headache data.

Dr. G, MD


above emphases mine - demo

This is amazing! The testosterone might have been enough to bring me to aspermia? (NO SPERM).

Maybe THAT (no sperm) is why I've been at 80% POIS-free?

But my endocrinologist still feels that continuing the T/P could improve my POIS even more based on the case study I sent him from the 2010 POIS STUDY in the British Medical Journal by Dr Selwyn Dexter! (PM me with your email if you want a copy)

My rapid sperm regeneration theory just went out the window, but who cares??? :) :)

Cross-posted to SMF Auto-Immune Male Contraceptive Methods
« Last Edit: 14/04/2011 01:40:13 by demografx »
 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12773 on: 13/04/2011 21:09:21 »
This data is very important, even though you weren't previously producing sperm.

If we take into consideration what Lauracostis says, perhaps we can STILL expect an improvement!!

And even if NOT, it's hope for many, many more who can now look to this path as one of relief!

All that remains, is to know exactly why. We could assume that the "T" stopped sperm, so therefore stopped the auto-immune process. But, LC's hypothesis is so temptingly interesting, it works so well as a "one solution fits all" theory.

But I guess, it IS only day 1 of the trial, and there's so much more to figure out!

How exciting!!! Have to go pee!




 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12774 on: 13/04/2011 21:36:07 »

Daveman - Is it possible for you to add another topic on the other site? labeled something along the lines of "case profile or POIS personal log" etc... I would post there regularly, I would be interested in seeing what other people do on a day to day basis with POIS, the aim of the being to update regularly.
 

The new format adapts to that quite well, Good point, the space is yours! ;)


Where can we find this? (Please let us know when it's created!)
« Last Edit: 13/04/2011 22:14:42 by demografx »
 

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #12774 on: 13/04/2011 21:36:07 »

 

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