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Post Orgasmic Illness Syndrome (POIS)

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Offline Hoping

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11280 on: 26/01/2011 03:20:07 »
I just contacted Dr. Ves Dimov, MD who is a professor at the University of Chicago Medical Center (Chicago, IL USA). He is a respected allergist/immunologist, researcher, and educator and recently published a study entitled "Semen allergy and other allergic disorders of intimacy." I sent him a copy of Dr. Waldinger's study and asked him if it's something I could try. I'll keep you posted...
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Offline monkeyboy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11281 on: 26/01/2011 03:36:29 »
  Hey Joyrex very nice write up on your story. I notice you mentioned having day dreaming problems soemthing I get but havn't read too many others having. Have you noticed an increase in pois symptoms after day dreaming? This is something I don't understand. Yes, pois causes through whatever chemical imbalance a lack of concentration usaully so bad you can't stop yourself from day dreaming to save your life that I get, however why does my pois symptoms get worse after day dreaming? I find after day dreaming I can feel the muscle tension in the head and neck get worse and the blood flow around the head constrict. The worse the constriction the worse the pois. when I go to the gym and workout I can feel the pressure on the arteries in my head and the more I get them to relax and open up from excercising the less the pois symptoms. Why is this happening?
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Offline joyrex

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11282 on: 26/01/2011 06:57:11 »
Quote from: gadhouse on 25/01/2011 14:32:47
...
Recently the chest pains has been increasingly worse and make me fear having an attack, sometimes the pain spreads down my arm. In fact this past weekend I ended up going to hospital after feeling pain in my chest which made me feel very worried but I was told the usual thing that nothing is wrong (which I have been told by several doctors over the years). Palpitations are another problem and these are very inconsistent but uncomfortable when they happen, I can feel my heart beating through my chest without needing to put my hand on it. In fact I can usually just look down and see my chest moving up and down with each beat.
...
I am desperate to find a solution to this problem as I feel that it has held me back so much in life including socially, physically and probably my drive to have a more successful career. My wife is very patient but as you can imagine it takes it's toll on and our sex life and our day to day interaction.
All this sounds so familiar. I have palpitation and chest pains too. Their intensity differs from time to time. They never exacerbate in such an amount that would make me think I need urgent medical attention. But I can well see how they might appear as serious heart trouble. Sounds like your palpitation symptom is a lot more frightening than mine.

I'm counting the days until my allergist appointment. It's now 20. [:P]
« Last Edit: 26/01/2011 06:59:14 by joyrex »
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Offline joyrex

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11283 on: 26/01/2011 08:42:40 »
Quote from: monkeyboy on 26/01/2011 03:36:29
  Hey Joyrex very nice write up on your story. I notice you mentioned having day dreaming problems soemthing I get but havn't read too many others having. Have you noticed an increase in pois symptoms after day dreaming? This is something I don't understand. Yes, pois causes through whatever chemical imbalance a lack of concentration usaully so bad you can't stop yourself from day dreaming to save your life that I get, however why does my pois symptoms get worse after day dreaming? I find after day dreaming I can feel the muscle tension in the head and neck get worse and the blood flow around the head constrict. The worse the constriction the worse the pois. when I go to the gym and workout I can feel the pressure on the arteries in my head and the more I get them to relax and open up from excercising the less the pois symptoms. Why is this happening?
I guess by "day dreaming" I mean my thoughts drifting away from the present moment and place. This is more usual when I am in a company of other people, or when there are a lot of people speaking around me at the same time and I have trouble picking up any single speaker or voice. Concentration difficulties, like you say.

I also get relief for my symptoms from heavy excercise (when I sweat like a pig and my heart is racing at maximum). I suppose the feel-good hormones that are then produced, mask almost all the symptoms. Or at least the symptoms don't feel so bad, although they are present (absent-mindedness, irritability etc). This relief might last for the passing day, but symptoms return slowly but surely on the following day.

I don't think I could say my symptoms get more severe after day dreaming. Rather, day dreaming is a coping function of my brain that lets it loose from the social and intellectual pressures, when I cannot meet those demands that come from the outside world.

But I could imagine that if one feels the outside demands high and has a relief for them via day dreaming, for example, there might be a negative after effect. That being the feeling of letting down others for not meeting their demands, being a slacker, so to speak. Further, this might exacerbate the POIS symptoms when one feels the need to push itself more to meet those demands, trying to make up for one's "downtime" and slack, although the body is not up to it. It's like trying to walk with a broken leg.

You mention neck tension and somehow being aware of blood flow in your head - I have these also. I would categorize them as symptoms of fight-or-flight response of the body (although I'm not sure). That is, when under the weight of POIS symptoms, the outside environment feels threatening, since you have so many demands to respond to, but your body is again not up to it.

I admit it's rather difficult to say and figure out which symptom is related to what or is caused by what. It's such a chaotic state your body is in.
« Last Edit: 26/01/2011 08:44:31 by joyrex »
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Offline afghan666

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11284 on: 26/01/2011 14:16:12 »
 
Quote from: joyrex on 26/01/2011 08:42:40
Quote from: monkeyboy on 26/01/2011 03:36:29
  Hey Joyrex very nice write up on your story. I notice you mentioned having day dreaming problems soemthing I get but havn't read too many others having. Have you noticed an increase in pois symptoms after day dreaming? This is something I don't understand. Yes, pois causes through whatever chemical imbalance a lack of concentration usaully so bad you can't stop yourself from day dreaming to save your life that I get, however why does my pois symptoms get worse after day dreaming? I find after day dreaming I can feel the muscle tension in the head and neck get worse and the blood flow around the head constrict. The worse the constriction the worse the pois. when I go to the gym and workout I can feel the pressure on the arteries in my head and the more I get them to relax and open up from excercising the less the pois symptoms. Why is this happening?
I guess by "day dreaming" I mean my thoughts drifting away from the present moment and place. This is more usual when I am in a company of other people, or when there are a lot of people speaking around me at the same time and I have trouble picking up any single speaker or voice. Concentration difficulties, like you say.

I also get relief for my symptoms from heavy excercise (when I sweat like a pig and my heart is racing at maximum). I suppose the feel-good hormones that are then produced, mask almost all the symptoms. Or at least the symptoms don't feel so bad, although they are present (absent-mindedness, irritability etc). This relief might last for the passing day, but symptoms return slowly but surely on the following day.

I don't think I could say my symptoms get more severe after day dreaming. Rather, day dreaming is a coping function of my brain that lets it loose from the social and intellectual pressures, when I cannot meet those demands that come from the outside world.

But I could imagine that if one feels the outside demands high and has a relief for them via day dreaming, for example, there might be a negative after effect. That being the feeling of letting down others for not meeting their demands, being a slacker, so to speak. Further, this might exacerbate the POIS symptoms when one feels the need to push itself more to meet those demands, trying to make up for one's "downtime" and slack, although the body is not up to it. It's like trying to walk with a broken leg.

You mention neck tension and somehow being aware of blood flow in your head - I have these also. I would categorize them as symptoms of fight-or-flight response of the body (although I'm not sure). That is, when under the weight of POIS symptoms, the outside environment feels threatening, since you have so many demands to respond to, but your body is again not up to it.

I admit it's rather difficult to say and figure out which symptom is related to what or is caused by what. It's such a chaotic state your body is in.




Actually that feel good hormone is neuro transmitter dopamine aka pleasure hormone imo.
  i hav been usin sulbutiamine which helps increase serotonin and dopamine.it helps me but not entirely.
 I was wondering if we could stack a good combo of nsaids and dopaminergics.i hav seen lessend pois symptoms after donating blood.
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Offline afghan666

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11285 on: 26/01/2011 14:25:11 »
 i recently donated blood.i o'd five times in one week.i was feeling less fatigue.yesterday i o d again but the symptoms hav returnd to a considerable amount.
 One more thng i slept(i was ful moon and i wantd to flirt with my babe undr cold moonlight lol) one night in my lawn .although i slept like 4 hrs and i had o d that day.the next morning i woke up fresh.i usually it takes serious will effort to move frm my bed in the morning.
 It was an amazing thng.has anyone testd these . . .demo . ?
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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11286 on: 26/01/2011 15:55:37 »
Quote from: afghan666 on 26/01/2011 14:25:11
i recently donated blood.i o'd five times in one week.i was feeling less fatigue.yesterday i o d again but the symptoms hav returnd to a considerable amount.
 One more thng i slept(i was ful moon and i wantd to flirt with my babe undr cold moonlight lol) one night in my lawn .although i slept like 4 hrs and i had o d that day.the next morning i woke up fresh.i usually it takes serious will effort to move frm my bed in the morning.
 It was an amazing thng.has anyone testd these . . .demo . ?

A general question? Maybe somebody knows. If we have anti-bodies in the blood, what effect do those have in receptors of our blood when we donate?

Can I pass aperm anti-bodies to a recipient who may remain with them permanently? Even so, I suppose, without "the gap" the receptor would probably not get POIS...  ????

Edit: just realized that the anti-bdoies would be anti-bodies to my sperm.... So no problem unles she's my girlfriend I guess.
« Last Edit: 26/01/2011 17:31:14 by daveman »
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Offline Green

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11287 on: 26/01/2011 21:43:36 »
Has anyone on the forum made any progression with thier medical advisor progessing with therapy suggested by Dr. Waldinger?
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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11288 on: 26/01/2011 22:49:19 »
Green, yes.  I have been seeing a physician in the UK who is trying to help me.  I am not sure I want to pursue the exact therapy that Waldinger suggested, but it is something I am considering, amongst other approaches.  I have an appointment near the end of February.  I will post any exciting news if it comes. I can respond to private messages about this. (But there may be a 1-2 week delay in my responses).
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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11289 on: 26/01/2011 22:52:38 »
About the scratch test.... 

If we have a reaction to sperm, I don't think it should matter if we are in POIS or out of POIS during the test.  Indeed, we supposedly go from no POIS to "in POIS" by a reaction. 
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Offline Guthrie

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11290 on: 26/01/2011 23:28:01 »
Quote from: Counterpoints on 26/01/2011 22:52:38
About the scratch test.... 

If we have a reaction to sperm, I don't think it should matter if we are in POIS or out of POIS during the test.  Indeed, we supposedly go from no POIS to "in POIS" by a reaction. 

Hmmm, I'm not sure whether it matters or not.  My sense was that the scratch test does not necessarily bring about a full-blown POIS episode--I thought the 'positive reaction' meant a welt on the skin.  And, in that regard, it seems possible that there could be a different sort of reaction depending on whether the body is already in 'antibody attack mode' (i.e. in the middle of a POIS episode).
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Offline valtak2610

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11291 on: 27/01/2011 01:39:22 »
Hi :
Long term POIS sufferer - avidly following the POIS related news on this Forum.
I'm wondering how a vasectomy would help/hinder.
This is how wikipedia describes it:
"..When the vasectomy is complete, sperm cannot exit the body through the penis. Sperm are still produced by the testicles, but they are broken down and absorbed by the body. Much fluid content is absorbed by membranes in the epididymis, and much solid content is broken down by the responding macrophages and re-absorbed via the blood stream. Sperm is matured in the epididymis for about a month once it leaves the testicles. After vasectomy, the membranes increase in size to absorb and store more fluid; this triggering of the immune system causes more macrophages to be recruited to break down and re-absorb more of the solid content. Within one year after a vasectomy, sixty to seventy percent of vasectomized men develop antisperm antibodies.[6] In some cases, vasitis nodosa, a benign proliferation of the ductular epithelium, can also result.[7][8] The buildup of sperm increases pressure in the vas deferens and epididymis. The entry of the sperm into the scrotum causes sperm granulomas to be formed by the body to contain and absorb the sperm which the body treats as a foreign substance."

Is there a way to measure the antisperm antibody count? Are we suffering from
a lack of these?
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11292 on: 27/01/2011 02:09:01 »


valtak2610, welcome to the POIS thread of The Naked Science Forum!




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


Our 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:

Our new POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
http://forums.delphiforums.com/POIS/chat


* Most recent POIS Research Studies, 2011 *

If you will send Prof. dr. Waldinger an e-mail, stating that you have read his message on the Forum, at http://www.thenakedscientists.com/forum/index.php?topic=6576.msg340138#msg340138 and that you are willing to fill in a questionnaire, he will send you the copies of both 2011 research articles by return through email. At a later date, he will send you the questionnaire which, after having filled in, you should send him back by e-mail.
His email:
prof.dr.waldinger.pois@gmail.com

Prof. dr. Marcel D. Waldinger's website:
http://www.post-orgasmic-illness-syndrome.com/en/index.html


First POIS Research Study, 2002

We have a copy of the first formal medical investigation on POIS by Prof. dr. Marcel D. Waldinger,MD,PhD, and Dr. Dave Schweitzer, MD.

  
Recent POIS Research Study, 2010

CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781


British Medical Journal Case Report, 2010

Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1


There are a couple of ways to get any or all of the above 3 studies: (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 our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "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, which has already been referenced in respectable sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For nearly 4 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus nearly 1,000,000 page visits. Not bad for a rare malady!
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11293 on: 27/01/2011 02:11:40 »



valtak2610, 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: almost 4 years' worth of posts (over  10,000 posts!) from 150+ Forum members, and an additional 150 POIS sufferers found elsewhere on the Internet by Member B_Jim.

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

for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/

and 740 results came up for "nocturnal emission" 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 ghunna

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11294 on: 27/01/2011 04:22:13 »
Hello

I am 58 year old male having almost all the symptoms described under POIS. Thanks to my wife who gave newpaper clip related to this topic. She is the only one I had told about my problem and we both were wondering what exactly it is. I have been suffering for about more than six years or so. I will make a detailed post about how I feel and some related history as well. At this stage I would like to contact Dr.Marcel Waldinger. Anyone with his contact info..Please let me know.

Thanks
Ghunna
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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11295 on: 27/01/2011 05:07:52 »
Quote from: rock27 on 25/01/2011 21:22:49
Quote from: CCconfucius on 25/01/2011 20:09:17
Does anybody else have sperm in their pee after abstaining from the big O for a while and still recovered 100%.
I think this might be the reason why am not recovering all the way, may be there is still minute inflammation.

I do get this too. I think I had an O and at the time not noticed it. Then when you pee you notice the sperm.  It's like an NE but then during the day. Could also be seminal leakage; I guess it's also related to premature ejaculation; some here mentioned that due to arousal they also get pois symptoms; I think it's the same here; the excitement just opened the gateway a little bit. I searched for this on the net and this could be due to high dopamine/high adrenaline/low serotonin and high histamine (though not confirmed). For now I'll try antihistamine as this also fights allergies.

I actually had my pee researched a while ago. For a while I had the same as some other member mentioned; cloudy pee a few days after O and then feeling much much better. So I peed in a bottle, couldn't see through the bottle anymore and the next morning there were clouds in it. So took it to GP. He scared me first, he tested it at his office and said he found blood and then said it might be cancer. But in the afternoon he called me and said the lab couldn't find anything. But I was high in something that had to do with kidney stones, but still in normal range.

When you say feels like NE during the day, do you mean symptoms or just sperm coming out.
So do you recover fully in  even with this problem?


that kidney stone test you are talking about might be BUN.
mine was high to but still in range.
« Last Edit: 27/01/2011 05:10:43 by CCconfucius »
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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11296 on: 27/01/2011 05:52:29 »
Quote from: Guthrie on 26/01/2011 23:28:01
Quote from: Counterpoints on 26/01/2011 22:52:38
About the scratch test.... 

If we have a reaction to sperm, I don't think it should matter if we are in POIS or out of POIS during the test.  Indeed, we supposedly go from no POIS to "in POIS" by a reaction. 

Hmmm, I'm not sure whether it matters or not.  My sense was that the scratch test does not necessarily bring about a full-blown POIS episode--I thought the 'positive reaction' meant a welt on the skin.  And, in that regard, it seems possible that there could be a different sort of reaction depending on whether the body is already in 'antibody attack mode' (i.e. in the middle of a POIS episode).

What I meant is that the hypothesis is we get POIS from some sort of allergic reaction.  So it seems intuitive that we would 'react' regardless of whether we are in or out of POIS.  If someone is having a serious food reaction, I would be quite sure that they would still react to a scratch test, 'mid-reaction'.  I may be wrong though.
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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11297 on: 27/01/2011 06:01:01 »
If this is auto-immune, (and I say IF as I do not think we should assume this just yet, a strong case has not yet been made), it would be interesting to know specifically what we are reacting to.  The assumption so far is sperm, but perhaps we can eliminate a few things in semen.

Like most of you here, I do not get POIS until after orgasm.  So this means I am not reacting to pre-ejaculate.  What is in pre-ejaculate?  Certainly many of the same things we find in semen...  We can eliminate these things, hopefully leaving only a few things to choose from.

There will probably be PSA (prostate specific antigen)... But I am not immediately finding the other things...

One other thought, related to the 'gap' hypothesis.  The tube system is actually quite intricate.  It travels to many places before it is emitted, resulting in potential hernias, etc.

These are just loose thoughts, but maybe worth considering...
« Last Edit: 27/01/2011 06:03:36 by Counterpoints »
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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11298 on: 27/01/2011 06:38:20 »
Have you guys heard about MRS, it can be used to measure chemicals in the body without going into the body.
I read somewhere it was used to measure neurotransmitter levels for reasearch project.

http://www.epilepsy.com/node/982532
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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11299 on: 27/01/2011 11:33:50 »
Quote from: valtak2610 on 27/01/2011 01:39:22
Hi :
Long term POIS sufferer - avidly following the POIS related news on this Forum.
I'm wondering how a vasectomy would help/hinder.
This is how wikipedia describes it:
"..When the vasectomy is complete, sperm cannot exit the body through the penis. Sperm are still produced by the testicles, but they are broken down and absorbed by the body. Much fluid content is absorbed by membranes in the epididymis, and much solid content is broken down by the responding macrophages and re-absorbed via the blood stream. Sperm is matured in the epididymis for about a month once it leaves the testicles. After vasectomy, the membranes increase in size to absorb and store more fluid; this triggering of the immune system causes more macrophages to be recruited to break down and re-absorb more of the solid content. Within one year after a vasectomy, sixty to seventy percent of vasectomized men develop antisperm antibodies.[6] In some cases, vasitis nodosa, a benign proliferation of the ductular epithelium, can also result.[7][8] The buildup of sperm increases pressure in the vas deferens and epididymis. The entry of the sperm into the scrotum causes sperm granulomas to be formed by the body to contain and absorb the sperm which the body treats as a foreign substance."

Is there a way to measure the antisperm antibody count? Are we suffering from
a lack of these?

I think antisperm antibody is what Dr. Waldinger calls "blocking antibodies". He says this is what the desensitization program develops, and that "yes" we are lacking in these.

First of all, to create POIS it requires more than sperm antibodies in the blood. It requires that the sperm also, in some way enters the bloodstream. For this reason most persons with vasectomies don't have POIS. Sperm doesn't enter the blood.

The actual reason that the body doesn't naturally produce "blocking antibodies" through regular exposure of sperm to antibodies in the blood is not clear to me. But controlled desensitization does. Perhaps it's because the exposure is light enough to spark the development of "blocking antibodies" but not enough to overwhelm it.

So welcome valtak2610. One more to join in and help us beat this thing.
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How does Murphey do it??
 



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Tags: nicotinamide  / pois  / post-orgasmic illness syndrome  / pois survey 
 
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