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  4. Post Orgasmic Illness Syndrome (POIS)
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Post Orgasmic Illness Syndrome (POIS)

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Offline gabin

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10800 on: 17/01/2011 07:25:40 »
Here is an interesting article about women allergic to their partners semen:
http://www.essortment.com/articles/semen_allergy_100017.htm

Still, I can't comprehend in the framework of Dr.Waldinger's theory why symptoms may develop after wet dreams when there was neither ejaculation nor leakage of sperm  or lubrication?

Though the fact that all the symptoms diminish after abstinence fits in pretty well into the study.
« Last Edit: 17/01/2011 08:24:59 by gabin »
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Offline gabin

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10801 on: 17/01/2011 07:42:53 »
Quote from: CCconfucius on 17/01/2011 06:18:56
i think dbfd is talking about this.
http://health.yahoo.net/news/s/nm/us_semen_allergy
how did it get out so fast and how do they know so much details.
Cause Reuters announced this and news sites just repost the feed.
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Offline ANONNY

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10802 on: 17/01/2011 09:01:02 »
Hello. I'm glad I found this thread, because this is something that I unfortunately think I have been suffering with for a long time. I'm in the process of going through it, and it seems like there is a ton of good info in it. Thanks especially to those compiling info in comprehensive posts with all the information learned throughout.

I am 26, male. I feel I have been suffering severely with this since about the age of 18. Although, I think there might have been issues beforehand, albeit, not anywhere as severe.

Symptoms include-
Brain fog
Extreme fatigue
Anxiety
Depression
Emotionless in a sense (besides of course, the anxiety)
Sensitivity to light
Blurred vision at times

The worst at times seems to be a heightened fight of flight reflex. Where in normal physiological condition, things that would make one a little nervous, it seems I am physiologically unable to deal with, in direct correlation to where I am at on the POIS timescale. Rapid heartbeat...all that good stuff. And this isn't something that is psychological in my estimation, as I was the class clown in HS, very easy going and outgoing, and now things have changed to being so damn jittery it is awful.

In exercise situations where I am putting myself under cardiovascular stress I also have an elevated heart rate. For example, I have a heart rate monitor, the other day, lets say "day 1" as it is called here, even before I started to run, my heart was at about 105, and on "day 7" it is much lower. This is not a one time scenario, but something I have noticed before consistently. And I quickly reach my upper rate level on the day 1 when I begin the workout, at a pace faster than I otherwise would.

I also seem to have what might be an increased insulin sensitivity on the lower days(day 1,2,3). There is a stop sign I can view from my backyard which becomes blurry after a meal on these days, and I almost feel incapacitated. At 5 foot 9 and 185 pounds, with a relatively healthy diet I don't think I am a likely candidate for diabetes-especially since it is much more pronounced on the days lower on the time scale.

I also have a heightened sensitivity to caffeine. It will REALLY make my heart race and keep me up all night.

Some Solutions attempted
Fish OilDoes seem to be of some benefit when taken right after an orgasm, the next day isn't as severe. I've read that there appears to be a dopamine connection here. One caveat, with consistent use of this, it seems to make me very antsy, and anxious, as if there is a balance to be reached with it and I overdid it.

Multivitamin + Magnesium + Vitamin D There seems to be some benefit here. I do feel better on it, more relaxed.

Protein supplement with all essential amino acids Moreso than the vitamins, I feel this helps, in fact, this being a recent addition in things I've tried, i've had some of the best feeling days I can remember after adding it.

Vitamins and Protein are made with real food, probiotics included, none of that cheesy additive crap and synthetic material. I use Garden of Life brand for the multi and protein.

However, I still don't feel right after I do it. This helps quicken the recovery, and lessen it, but it is still there.

This has gotten in the way of my social life, education, job and I can't quite articulate how depressed and bitter this has made me. The affect this has had on my life is profoundly negative. I feel pretty envious of people around who seemingly don't have to deal with this, and I don't like feeling that way. I thought I was crazy, but searching the internet, and eventually finding this a while ago-everything seemed to fit in. Staying in tune with the ups and downs as the days progressed from 1 to 2 to 7, validated it was this. My heart goes out to everyone with this.

In my completely E-couch scientist not very educated estimation, I do tend think this is something related to the central nervous system, with prolactin also involved somehow. Hopefully there comes a definitive answer-and a cure.


« Last Edit: 17/01/2011 09:06:36 by ANONNY »
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Offline ANONNY

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10803 on: 17/01/2011 09:14:23 »
Having started the thread at the beginning, I'm just now seeing this major update, I have to say, it didn't put a smile on my face. Allergic to one's own semen treated by years of injecting semen into your skin??

I feel like slamming my head against a wall until it splits open and my brain drips out.
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Offline Vandemolen3

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10804 on: 17/01/2011 09:20:14 »
Thanks dr. Waldinger for all your great efforts!

I have a few questions:
1. What is 'significant diminishment of their complaints'? Does that mean that the complaints always remain? And how significant?

2. I and a few others on this forum also have POIS-symptoms without an ejaculation.

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Offline Vandemolen3

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10805 on: 17/01/2011 09:22:18 »
Quote from: Vandemolen3 on 26/11/2010 15:51:01
When I had an O. under the shower my POIS-symptoms were 50 % less.
Maybe this is because I cleaned myself from the semen. And that's why because the allergic reaction is less.

I think my allergy began because I didn't wash me after an O. I used only a bit of paper and then went to sleep. The next day I washed my self.

A few months ago I searched on Google 'sex and hygiene'. I found out that Arabs have to wash them selves directly after sex. This is obligatory from their religion. Maybe they have this wisdom because their medicine was well developed.

« Last Edit: 17/01/2011 10:04:23 by Vandemolen3 »
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Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10806 on: 17/01/2011 10:29:47 »
I would like to add my huge thanks, to everyone else's for the dedication of Dr Waldinger and his team. It is great to know that there is a team of researchers pursuing the cause and seeking treatment of POIS. Privately funding 8 years of research into a rare and very little known condition is a great achievement. I hope publicity from the new articles will make further funding easier.

The autoimmune reaction makes a lot of sense to me as the condition does seem so similar to an allergic response.  Knowing that there is a more definite understanding of what might be causing my condition and that there is a possible treatment is heartening. The treatment does not sound easy but it is a start and it is much better to have that than to go another few years without being any closer to knowing how to treat this thing. Of course we should all remember that we are individuals with slightly differing symptoms and at this stage its possible this isn't the answer for all of us.

I suppose one of the many things that is perhaps still unknown is what is it specifically in semen (if there is only one thing) that is the allergen. I'm sure isolating that will take more research (and funding) but I guess might refine the treatment. Dr Waldinger has said he and his team still have many questions to answer and its great to know they have plans to further the research they have already conducted.

I'm optimistic (with a little cautiousness) about the latest research. Rather than the end of POIS, it feels like the start of a new beginning..the next stage. I'm just happy that some sort of progress has been made in a scientific way.

Every now and again we give thanks to this forum thread and I'm going to do it again. I second Dr Waldinger's praise of Demografx and extend it to include everyone who has contributed to the forum, especially those core of people who post frequently and regularly. My posts I'm aware are intermittent for a variety of reasons and I am grateful to those who seem to post something every week. And of course John21 should also get special mention as the person who started this thread at a time when we were all very much in the dark, much more so than today.

Good luck everyone.

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Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10807 on: 17/01/2011 10:38:44 »
Quote from: Vandemolen3 on 17/01/2011 09:22:18
Quote from: Vandemolen3 on 26/11/2010 15:51:01
When I had an O. under the shower my POIS-symptoms were 50 % less.
Maybe this is because I cleaned myself from the semen. And that's why because the allergic reaction is less.

I think my allergy began because I didn't wash me after an O. I used only a bit of paper and then went to sleep. The next day I washed my self.

A few months ago I searched on Google 'sex and hygiene'. I found out that Arabs have to wash them selves directly after sex. This is obligatory from their religion. Maybe they have this wisdom because their medicine was well developed.



I guess washing afterward could help. However, from what Dr Waldinger has said, the reaction seems to start as soon as seminal fluid is released toward and into the urethra. So reaction occurs inside the body. Washing would presumably only rid us of semen in contact with the skin.

If we are stimulated to the point where there is a little leakage but not full ejacualtion, this might also cause a reaction (as several have reported, including myself). This leakage could cause reaction inside the body without most of the released fluid leaking out. Hence POIS could still occur without ejaculation. When I have had this, milder symptoms have occured compared to a full ejaculation. This would make sense as less fluid is released.
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Offline John21 (OP)

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10808 on: 17/01/2011 10:47:28 »
Thank you for your work Dr Waldinger. But if it is an allergic reaction wouldn't white blood cell counts be elevated in a routine blood test? Mine have always been normal in POIS.

GC posted this link: http://www.babycenter.com/404_what-is-a-sperm-allergy-and-how-do-i-know-whether-i-have-one_6150.bc

I find this interesting:
Quote
Although we don't know why a woman develops sperm antibody reactions, a man develops antibodies to his own sperm when it comes into contact with his blood, usually after he has a vasectomy, testicular torsion (where a testicle twists inside the scrotum), infection, or trauma. Since the two fluids don't normally mix, blood mounts an allergic reaction against sperm. Men who reverse vasectomies in the hope of fathering children often develop an allergic reaction to their own sperm.

If this is true then that it's possible that a kick to the gonads in my youth might have done something. But why would only certain individuals with the allergy get POIS, why would most cases be symptomless? And wouldn't it follow that cleaning out the urethra by urination immediately after orgasm reduce the symptoms. Has anyone tried drinking lots of water an hour or two before sex? or maybe cranberry juice...
« Last Edit: 17/01/2011 10:53:23 by John21 »
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Offline kristy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10809 on: 17/01/2011 10:48:26 »
I have had sex right upto the point of orgasm with no ejaculation, the groin and lower back pain I experienced was incredible, to the point that I could not stand up straight.

After a few minutes of this I decided it could'nt get much worse if I did actually ejaculate so I did and it was like some one had flicked a switch, I physically felt the pain flush out from my groin and back, afterwards it was my normal POIS symptoms.
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Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10810 on: 17/01/2011 11:00:17 »
In the Yahoo article (CC posted the link in an earlier message on this page - thanks CC), it says: "For these studies, Waldinger and colleagues analyzed 45 Dutch men who were diagnosed with the illness." If they were indeed all Dutch then this to me suggests there are many more sufferers out there, I guess we assumed this already. As far as I'm aware, there are not 45 Dutch people involved with this forum. There must be many people out there still completely in the dark about what is happening to them. Let's hope they find help. I recommend forwarding references to Prof Waldinger's new papers in the Journal of Sexual Medicine to all doctors you may have had contact with to inform them of  the latest news and emphasise that the condition is real and should be taken seriously. Most doctors seem unaware of Prof Waldinger's 2002 publication despite the fact that is had a fair bit of coverage on a variety of internet sites at the time. It is quite possible that most doctors might miss the latest papers too. So lets make sure they seem them.
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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10811 on: 17/01/2011 12:23:23 »
First of all, "Thank you Dr. Waldinger!" for thinking of us and letting us be a part of helping you know more about this dreadful ailment.

I personlly have always suspected a reaction to my own sperm, but also had a particular reason to do so, given that my case started after surgery to undo a vasectomy.

However, we have to be reminded that we are not experts, nor have spent 8 years of detailed investigation armed with decades of knowledge in a very complex area involving complex interactions in the human reproductory system.

One only has to spend a few hours on the internet investigating auto-immune mechanisms to understan how complex and incredibly interactive they can be. It's surprising they don't fail more.

Let's all work towards 1st) of all understanding what Dr. Waldinger is presenting, and 2nd) work towards helping him extend the knowledge to greater depths of effectivity.

In the 3.5 years of this forum we have gone from absolute ignorance of this ailment to the edge of world recognition... the word POIS came from Dr. Waldinger's first papers if I'm not mistaken. If 3 or 5 or 7 years more are reqired then we're just going to have to roll up our sleves. But I think "the blister has been popped". If we focus now, we can help to contribute to a solution (pardon the pun) that is quicker and more effective than desensitization. But the direction is much clearer.
« Last Edit: 17/01/2011 14:23:45 by daveman »
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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10812 on: 17/01/2011 13:51:36 »
It's very positive that finally there's officially a team of doctors working on POIS.
Thank you to Dr. Waldinger and his team!

I have some questions and comments about the theory but I'll wait to read the study.
Of course years of treatment with weekly doctor visits is not easy to follow, I can only hope there will be improvement regarding this.

So perhaps we should be able to create a full POIS episode after being in contact with our own sperm (previously frozen), without ejaculation and orgasm?
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nick2k22

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10813 on: 17/01/2011 15:47:27 »
Two things are interesting from Dr. Waldiger.
1> he said the pin ***** is a way to test this.  I would wonder if there's anyway he could post the protocol to that test so we can get local physicians to test us.
2>Wouldn't steroids decrease the immune response and at least confirm if this allergen diagnosis was true in most of our cases?

http://allergies.about.com/od/fa1/f/3monthshot.htm
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Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10814 on: 17/01/2011 18:07:51 »
Quote from: Vandemolen3 on 17/01/2011 09:22:18
Quote from: Vandemolen3 on 26/11/2010 15:51:01
When I had an O. under the shower my POIS-symptoms were 50 % less.
Maybe this is because I cleaned myself from the semen. And that's why because the allergic reaction is less.

I think my allergy began because I didn't wash me after an O. I used only a bit of paper and then went to sleep. The next day I washed my self.

A few months ago I searched on Google 'sex and hygiene'. I found out that Arabs have to wash them selves directly after sex. This is obligatory from their religion. Maybe they have this wisdom because their medicine was well developed.




This is in the bible.
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Offline Animus

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10815 on: 17/01/2011 18:08:39 »
Quote from: demografx on 17/01/2011 07:22:39

And our road is now paved more smoothly with serious scientific medical papers that we can confidently wave in the faces of all those silly naysayers who say, "it's all in your heads" !

Yes, I agree with you on that. And I look forward to responding to dr.Waldinger's survey/ questionnaire, and participating in his research, hopefully!
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Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10816 on: 17/01/2011 18:21:12 »
Thank you to Dr Waldinger and his team of researchers, and thank you to Demo and all the forum members who contribute to our forum, webpages, video, and survey!
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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10817 on: 17/01/2011 18:27:04 »
Quote from: ANONNY on 17/01/2011 09:14:23
Having started the thread at the beginning, I'm just now seeing this major update, I have to say, it didn't put a smile on my face. Allergic to one's own semen treated by years of injecting semen into your skin??

I feel like slamming my head against a wall until it splits open and my brain drips out.

I think the solution is probably closer than it may seem from initial impact! We here and many other lesser focused local specialists, have suspected many, many possibilities and solutions. But without corroboration or proofs or in depth investigations, we (and the less dedicated specialists) were sort of fumbling around in the dark.

Although we need to pat ourselves on the back for being close on various accounts, we now can direct ourselves towards a more certain direction. As Dr. Waldinger himself seems to suggest, there still needs to be a dedicated effort towards a potential cure, yet the direction to that cure IS more certain.

The fact that tests can identify to a high degree of certainty the POIS condition with repeatability indicates that a mechanism is identified. To have been able to predict the mechanism indicates that such is understood.

My guess is that based on this, a cure could be able to be located, even before many patients have terminated their desensitization periods. Look what's happen in 3.5 yrs (since this thread was begun).

The overnight cure has not yet arrived, but we are standing at the doorway. More than ever before.
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Offline Animus

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10818 on: 17/01/2011 18:39:00 »
I'm very positive there is finally a team of researchers and medical study of POIS. I'd like to add my thanks to dr. Waldinger, to demo, and all the core members of the forum for their tireless efforts. 

I look forward to reading the paper, before I post my comments and initial feeling re. the allergic theory. I have lots of questions about it too.
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Offline Habibou

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #10819 on: 17/01/2011 18:48:54 »
Thank you very much for those investigations !

I understand now why : i feel totally stress before/during/and after an "O" !
I just don't really understand how the the brain forg is explained (which is my main symptom and the awfulest)...


I also want to say that taking Ginkgo Biloba helpt me a lot (the main aim is to increase the dopamine). I stoped it to see the difference and it was a huge difference !
I will make some anaylisis tomorrow about it and DHEA  [:)]
My doctor told me that "Dopastim" (a frenchnew thing) would help so much more than Ginkgo so i have hopenesses for my brain forg.

I wonder how urinate can help to wash the urethra but it could worth to try it  [:)] drinking a lot before an O and see the results at the end!
If it is "only an urethra allergy", we have to focus on this ? is it possible to change our urethra without risk? (yes, perhaps a stupid question^^) or to make it "unsensitive" to our stuff?

I also have a 105/ minute heartbeat and i can't do sport while i love it.
I check my blood white cellsand it was high :
hematocrit : 54 %   (average up : 52%...)
Eosinophils : 1200   ( average up 400...)
Ig M : 242% of the normal ( normal is 70 % to 130%)
Ig A :  49%
Ig G :  99%
C3   : 124%
C4   :  73%
I guess it underlines the immun reaction very well !

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