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

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11240 on: 24/01/2011 22:18:58 »

Animus, I also alerted Mat about this via PM.
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11241 on: 24/01/2011 22:20:52 »
Quote from: lauracostis on 24/01/2011 22:00:20
Quote from: demografx on 24/01/2011 21:31:54

I just wrote to Dr Christina Wang, one of the principal investigators of the male contraceptive study, to see what their status is. (Started in May, 2010 with a $1.5 million grant).
demo if you ever hear back from Dr. Wang, see if you can find out what progesterone/testosterone combination they are using and the dosage, route, and frequency.

Ok, I just did, I'll write again and use your post.
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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11242 on: 24/01/2011 22:26:21 »
Quote from: horizon on 24/01/2011 21:34:15
Quote from: daveman on 24/01/2011 16:50:29

Calcium channel blockers and Adjudin permit sperm production although the sperm may be non-viable, however it may not guaranttee prevention of allergy because valid sperm material is present.


I understand exactly what you're saying but I wouldnt rule them out so quick...

...We know Testosterone has been found to help POIS.
Could it be Testosterone helps POIS because Testosterone changes the structure (protein structure) of semen, this then, in turn, prevents the allergic reaction?

Perhaps changing the structure of semen prevents the allergic reaction??

As Calcium channel blockers and Adjudin both also change the structure of semen, they could prevent an allergic reaction?

In regards to Silodosin
From http://en.wikipedia.org/wiki/Silodosin
"Since silodosin is a highly selective inhibitor of the α1A adrenergic receptor, it causes practically no orthostatic hypotension (in contrast to other α1 blockers). On the other side, the high selectivity seems to cause more problems with ejaculation.[3]

As α1A adrenoceptor antagonists are being investigated as a means to male birth control due to their ability to inhibit ejaculation but not orgasm, a trial with 15 male volunteers was conducted. While silodosin was completely efficacious in preventing the release of semen in all subjects, 12 out of the 15 patients reported mild discomfort upon orgasm. The men also reported the psychosexual side effect of being strongly dissatisfied by their lack of ejaculation.[4] Despite the incidence of side effects, the drug still appears to be a promising candidate for a male oral contraceptive drug."


This is a little disappointing to read "12 out of the 15 patients reported mild discomfort upon orgasm".
But wait, think about it, if we learn more on what causes "discomfort upon orgasm" perhaps we will all learn more about the causes of POIS. (although, of course, POIS is discomfort after orgasm). If a drug can do the opposite of Silodosin then perhaps we are on to a winner.
But if Silodosin is found to prevent POIS, Id be willing to put up with discomfort on orgasm if it prevents a week of feeling awful after.
Is this the first drug to be reported to cause "discomfort upon orgasm"? Very interesting.

Phenoxybenzamine
http://en.wikipedia.org/wiki/Phenoxybenzamine

Phenoxybenzamine (marketed under the trade name Dibenzyline) is a non-specific, irreversible alpha antagonist.

Uses
It is used in the treatment of hypertension, and specifically that caused by pheochromocytoma. It has a slower onset and a longer lasting effect compared with other alpha blockers.

It was also the first alpha blocker to be used for treatment of benign prostatic hyperplasia,[1] although it is currently seldom used for that indication due to unfavourable side effects.
It has been used in the treatment of hypoplastic left heart syndrome.[2]
It is also used in Complex Regional Pain Syndrome Type 1 due to its anti-adrenergic affects. It has shown to be beneficial if used in the first 3 months of CRPS diagnosis.

Phenoxybenzamine has long been known to block ejaculation without affecting semen quality or ability to achieve orgasm, which could make it an effective male contraceptive. This effect is completely reversible, and is believed to be the result of alpha-1 adrenoceptor blockade in the longitudinal muscles of the vas deferens.[3][4][5] As of 2008, research was underway to identify possible drug candidates that share this effect but act specifically on the reproductive tract, unlike phenoxybenzamine.[3]


Not sure if this is a good thing or bad thing but "blockade in the longitudinal muscles of the vas deferens" sounds interesting to me as I have a pet theory those Vas Deferen muscles are the key to my POIS problem.

Great information horizon. Looks like there's something for everyone. Would be great if we could set up volunteers for each of the processes, those who "feel" that one or the other would be better for them. Perhaps some great advances could be made.

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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11243 on: 24/01/2011 22:29:07 »
Quote from: demografx on 24/01/2011 21:52:13
For those interested in the norethisterone-progesterone study

From:         Christina Wang, MD
Date:         January 24, 2011 1:31:33 PM PST
To:              demografx
Cc:             Elizabeth Ruiz
                   Ronald S Swerdloff

Subject:       RE: Male conraceptive study

We are currently completing a study and will be starting a study on a new oral androgen to see whether this agent will be tolerated in healthy men and to do preliminary studies on how effective this may be. We will let you know when the recruitment of this study starts.
 
Christina Wang, MD
Program Director,
General Clinical Research Center
Harbor-UCLA Medical Center and Los Angeles Biomedical Research Institute
Professor of Medicine,
David Geffen School of Medicine at UCLA


From:         demografx
Sent:           Monday, January 24, 2011 1:09 PM
To:               Christina Wang, MD
Subject:       Male conraceptive study
 
Dear Dr Wang,
 
We communicated about one year ago. If you recall, I moderate an internet forum of people who are very interested in your work.
 
Can you please tell me briefly the status of the male contraceptive study/investigation?
 
Many thanks,
 
[demografx]

Seems she didn't want to say how the first one went yet, but the opportunity to particicpate in future tests could be very interesting!!

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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11244 on: 24/01/2011 22:30:43 »
Quote from: lauracostis on 24/01/2011 22:00:20
Quote from: demografx on 24/01/2011 21:31:54

I just wrote to Dr Christina Wang, one of the principal investigators of the male contraceptive study, to see what their status is. (Started in May, 2010 with a $1.5 million grant).
demo if you ever hear back from Dr. Wang, see if you can find out what progesterone/testosterone combination they are using and the dosage, route, and frequency.

Please! This interests me greatly too!
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Offline mat780

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11245 on: 24/01/2011 23:02:31 »
Quote from: Animus on 24/01/2011 22:02:17
Quote from: demografx on 24/01/2011 21:35:52
Quote from: Animus on 24/01/2011 21:28:25

Hi,
Can anyone tell me if we still have a world map of the members on the Forum? I remember someone started that not too long ago. I'm really interested to start a local, San Francisco support group, and would like to contact other members in this area. Also, please contact me if you're in California, or on the West Coast. Thanks.


http://sites.google.com/site/poiswebsite/pois-map [nofollow]
PM  "mat780" for more details.


thanks, demo

Dear All,

If anyone still wants to join our POIS Map, you can do it !!!

We are nineteen Forum Members right now on the Map.

As you may guess, this map is not intended to be just something nice for our website;
it’s a research tool. From this map, very interesting conclusions can be extracted, once
a certain number of members are involved.

Thank you very much!

Regards,
Mat



How can you join? Send me a Private Message with your location (your Country plus your state/province).
Member’s data will remain private, so your location will never be associated with your username.

Take a look at the POIS Map following this link:
http://sites.google.com/site/poiswebsite/pois-map [nofollow]


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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11246 on: 25/01/2011 00:35:00 »
Quote from: daveman on 24/01/2011 22:30:43
Quote from: lauracostis on 24/01/2011 22:00:20
Quote from: demografx on 24/01/2011 21:31:54

I just wrote to Dr Christina Wang, one of the principal investigators of the male contraceptive study, to see what their status is. (Started in May, 2010 with a $1.5 million grant).


demo if you ever hear back from Dr. Wang, see if you can find out what progesterone/testosterone combination they are using and the dosage, route, and frequency.


Please! This interests me greatly too!


Rapid reply to my first query, yet no reply (yet) to my 2nd with laurac's questions highlighted above.

Dr Wang's big (comparative) delay in replying to my email makes me wonder if the answer to laurac's question might be what the study is trying to find out!:

"...current studies aim to find the best combination of testosterone and progestins for effective spermatogenesis suppression and to explore other delivery methods for these hormones"
From http://journals.lww.com/co-urology/Abstract/2010/11000/Hormonal_approaches_to_male_contraception.13.aspx

I'm risking peskiness, but I just sent her yet another request.

edit - I just noticed, the quote directly above comes from Dr Wang's recently published study! (Includes the other 2 investigators on her email to me)

Current Opinion in Urology:
November 2010 - Volume 20 - Issue 6 - p 520–524
doi: 10.1097/MOU.0b013e32833f1b4a
Andrology, sexual dysfunction and infertility: Edited by Peter N. Schlegel
Hormonal approaches to male contraception
Wang, Christina; Swerdloff, Ronald S

I just wrote to Dr Wang and her associates (again! I will now get The Pesky Award For 2011!) and explained in more detail why we are so curious and how this might fit in to recent research that has been done on semen-allergy.
« Last Edit: 25/01/2011 01:06:57 by demografx »
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11247 on: 25/01/2011 01:26:06 »
Quote from: mat780 on 24/01/2011 23:02:31
Quote from: Animus on 24/01/2011 22:02:17
Quote from: demografx on 24/01/2011 21:35:52
Quote from: Animus on 24/01/2011 21:28:25

Hi,
Can anyone tell me if we still have a world map of the members on the Forum? I remember someone started that not too long ago. I'm really interested to start a local, San Francisco support group, and would like to contact other members in this area. Also, please contact me if you're in California, or on the West Coast. Thanks.


http://sites.google.com/site/poiswebsite/pois-map
PM  "mat780" for more details.


thanks, demo

Dear All,

If anyone still wants to join our POIS Map, you can do it !!!

We are nineteen Forum Members right now on the Map.

As you may guess, this map is not intended to be just something nice for our website;
it’s a research tool. From this map, very interesting conclusions can be extracted, once
a certain number of members are involved.

Thank you very much!

Regards,
Mat



How can you join? Send me a Private Message with your location (your Country plus your state/province).
Member’s data will remain private, so your location will never be associated with your username.

Take a look at the POIS Map following this link:
http://sites.google.com/site/poiswebsite/pois-map


Thank you, Mat, for keeping this project alive!

I hope everyone will cooperate.

It would be a great thing for people to share POIS resources and ideas with their POIS "neighbors".
« Last Edit: 25/01/2011 01:28:51 by demografx »
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11248 on: 25/01/2011 02:10:58 »
If anyone wants to know how to obtain this study, PM me your email address:

"Hormonal approaches to male contraception"
Current Opinion in Urology
November, 2010
Dr Christina Wang, MD; Dr Ronald Swerdloff, MD
« Last Edit: 25/01/2011 02:13:01 by demografx »
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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11249 on: 25/01/2011 03:30:41 »
Quote from: Animus on 24/01/2011 22:00:59
[:)]Attention all West Coast POIS sufferers!! [:)]

Please contact me if you live in California, or in San Francisco!
I would like to form a local support group of POIS members, where if we get together we might be able to accomplish more, share resources, and information! I know of some good doctors in this area, and it would be great to meet you. Together we might be able to have more leverage with the medical community.
Please PM me.
[/size]
I like this it is time to graduate from the forum and get more organized so we can make progress quicker
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Offline joyrex

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11250 on: 25/01/2011 05:59:48 »
Hi,

Here's another POIS sufferer, I guess. I suppose I've had it since my teens when I began my sexual activities. I'm a 30 year old male. The symptoms have gotten more severe as years have passed. Mostly I've been battling and coping with it, trying to find out ways how to be asexual. Been wondering if my sexual activity is wrong and a bad thing to do. Lots of such references are found in different religious materials, which I've been drawn to from time to time. Frankly the POIS symptoms feel like I'm being punished for my sexual activity (masturbating, having sex) by some higher power.

After some weeks of trying to avoid any sexual activity, my libido would take over my willpower, so to speak, and afterwards I had the symptoms again. Have had a lot of psychological problems because of it - being ashamed, very socially reserved, very quiet, isolated. Also had some more serious problems - depression, alcoholism, self-harming. 

Some of my symptoms are: burning (inflamed) sensation around the chest, blurred vision, weakness of muscles, aches in joints and limbs, difficulty in concentration, absence of thoughts, slow thinking, difficulty of producing speech, difficulty keeping my body balance, difficulty breathing, stuffed nostrils, elevated heart rate, palpitation, night time sweating of legs, restless legs, bad short term memory, twitching of eye surroundings, stomach problems, lethargy, derealisation, excessive involuntary daydreaming, being apathetic etc. Not sure what of these are primary and secondary symptoms (caused by the primary symptoms), or if all are related to POIS. Some of them appear instantly, others after some hours or days.

Some other problems that are (possibly) caused by the symptoms: irritability, difficulty planning daily life, having to work very hard to achieve the minimum, seeking relief from further orgasms: pornography addiction. Computer gaming addiction, when having no energy to do anything else. Overeating, when getting no pleasure from anything else. A lot of "negative cycles". Lots of frustration with not knowing what is wrong with me.

There are some things that ease my symptoms moderately, when done routinely: intense exercise, healthy diet, keeping sugar ingestion to a minimum, keeping caffeine and alcohol ingestion to zero. Some herbs are helpful in keeping the need for sexual release away for an extended period, such as garlic and cumin. Not sure how or why that works.

There's also a "brain oddity" which I have - related to this issue or not - usually I start sneezing when being aroused or when having thoughts in my mind which arouse me sexually. Another thing that causes heavy sneezing is my hay fever. Are these two connected? No idea.

Previously I've been seeking mostly psychiatric and therapeutic help for my problems, since I could not figure out a somatic cause (although I've tried to come up with some, during the years). Psychiatric and therapeutic aids have helped me cope. Somehow I've always figured that the cause should be somatic, but I suppose in illnesses like this, the line between psychological and somatic is not so clear.

I'm glad to have discovered this illness as it was widely spread in the news recently. I have an appointment with a doctor who is specialized in allergies and sex diseases. Hopefully I will get some kind of help from her.

I'm no longer plagued with such severe confusion and lack of self confidence because I have knowledge and information about the illness, and a support group, thanks to this forum.
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11251 on: 25/01/2011 07:20:55 »

joyrex, 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 #11252 on: 25/01/2011 07:22:22 »


joyrex, 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 demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11253 on: 25/01/2011 07:30:01 »
Quote from: joyrex on 25/01/2011 05:59:48

Frankly the POIS symptoms feel like I'm being punished for my sexual activity (masturbating, having sex) by some higher power.


joyrex, if the above were to be found true (personally, I don't believe it is true), it only makes the situation worse, not better.

Self-castigation - which we've all done at one time or another - has never produced any constructive results that I could see.

We are human. Not angelic.

But not everyone agrees with me [:)]
« Last Edit: 25/01/2011 07:39:51 by demografx »
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11254 on: 25/01/2011 07:32:37 »
Quote from: demografx on 24/01/2011 21:31:54

I just wrote to Dr Christina Wang, one of the principal investigators of the male contraceptive study, to see what their status is. (Started in May, 2010 with a $1.5 million grant).


Her final note back to me was terse and said they cannot help.
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Offline gadhouse

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11255 on: 25/01/2011 14:32:47 »
I am so glad to have come across this website and information about POIS. I have been searching for the answer to my problem for many years but I feel I may have now found a name to go with my problem - POIS.

Here is how it has effected me...

I am 32 years old and I had my first symptoms at the age of about 14 or 15. Firstly I had back pains that seemed to get considerably worst when I masturbated but I thought this was just due to a martial arts injury and maybe partly it was. A little while later I started to get chest pains after masturbating which I found very worrying and thought I had been over masturbating. As a young teenager I used to masturbate heavily and felt very shameful of this. I had some tests done at the hospital and was told I have a very healthy heart and that it must be some form of anxiety. At first I excepted this because I felt shameful and thought maybe it was just brought on by guilt. I became doubtful as the years went on though. As I reached late teens and early twenties other symptoms had started to happen. Exhaustion, aching pains, pins and needles and leg cramps although the chest pains stopped for several years and so did the back pain.

As I reached my mid 20's the chest pains started to come back along with more extreme fatigue, confusion, not being able to think straight or hold conversation properly or listen properly. Feeling of being cold and aching (like mild flu type aching that just makes everything seem such a huge effort and my joints being more painful). From my  late 20's I started to find I would get congested after sex as well, runny nose, sore eyes and sneezing. It's always kind of feels that sex has taking all of my ability to function properly and leaves me totally drained, a shadow of myself. Sometimes I get ratty and uncontrollably irritable and fidgety when trying to concentrate on a task at hand or answer a question. It makes me feel depressed and leaves me with a much duller view of the world and I get less enjoyment out of the things I do. I feel a huge need to just sleep but sleep does nothing to make the symptoms go away, although while I'm laying doing nothing it makes it easier to tolerate. The strange thing is that the severity of the symptoms can vary considerably and I can't seem to find a pattern. Sometimes I suffer really bad for 4 or 5 days and other times I may not notice much at all. It doesn't seem to be connected to my diet (I am a pretty healthy eater). Sometimes if I go for a long time without sex then when I do it it's not too bad. Bad other times like this weekend it felt more severe. Last week I was feeling really good, motivated, being very productive at work, out running a few evenings etc. After having sex on Friday this week is a very different story. So far the most productive thing I have done at work this week is write this email.

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 usually only have sex about 1or 2 times a month and try not to have sex if I have anything important to do in the following days. I usually write those off as days of just coping! Sometimes exercise can help and other times it makes me worse or gives me worse chest cramps or painful knees etc. The knees to me seem even more strange than the rest of the symptoms but my left knee in particular gets much more painful after sex when trying to climb stairs or run.

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.
« Last Edit: 25/01/2011 14:37:54 by gadhouse »
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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11256 on: 25/01/2011 15:04:00 »
Quote from: gadhouse on 25/01/2011 14:32:47
I am so glad to have come across this website and information about POIS. I have been searching for the answer to my problem for many years but I feel I may have now found a name to go with my problem - POIS.

Here is how it has effected me...

I am 32 years old and I had my first symptoms at the age of about 14 or 15. Firstly I had back pains that seemed to get considerably worst when I masturbated but I thought this was just due to a martial arts injury and maybe partly it was. A little while later I started to get chest pains after masturbating which I found very worrying and thought I had been over masturbating. As a young teenager I used to masturbate heavily and felt very shameful of this. I had some tests done at the hospital and was told I have a very healthy heart and that it must be some form of anxiety. At first I excepted this because I felt shameful and thought maybe it was just brought on by guilt. I became doubtful as the years went on though. As I reached late teens and early twenties other symptoms had started to happen. Exhaustion, aching pains, pins and needles and leg cramps although the chest pains stopped for several years and so did the back pain.

As I reached my mid 20's the chest pains started to come back along with more extreme fatigue, confusion, not being able to think straight or hold conversation properly or listen properly. Feeling of being cold and aching (like mild flu type aching that just makes everything seem such a huge effort and my joints being more painful). From my  late 20's I started to find I would get congested after sex as well, runny nose, sore eyes and sneezing. It's always kind of feels that sex has taking all of my ability to function properly and leaves me totally drained, a shadow of myself. Sometimes I get ratty and uncontrollably irritable and fidgety when trying to concentrate on a task at hand or answer a question. It makes me feel depressed and leaves me with a much duller view of the world and I get less enjoyment out of the things I do. I feel a huge need to just sleep but sleep does nothing to make the symptoms go away, although while I'm laying doing nothing it makes it easier to tolerate. The strange thing is that the severity of the symptoms can vary considerably and I can't seem to find a pattern. Sometimes I suffer really bad for 4 or 5 days and other times I may not notice much at all. It doesn't seem to be connected to my diet (I am a pretty healthy eater). Sometimes if I go for a long time without sex then when I do it it's not too bad. Bad other times like this weekend it felt more severe. Last week I was feeling really good, motivated, being very productive at work, out running a few evenings etc. After having sex on Friday this week is a very different story. So far the most productive thing I have done at work this week is write this email.

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 usually only have sex about 1or 2 times a month and try not to have sex if I have anything important to do in the following days. I usually write those off as days of just coping! Sometimes exercise can help and other times it makes me worse or gives me worse chest cramps or painful knees etc. The knees to me seem even more strange than the rest of the symptoms but my left knee in particular gets much more painful after sex when trying to climb stairs or run.

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.

Welcome to the club. At least now, we can say this with a little more optimism than sympathy. Dr. Waldinger who coined the phrase "POIS" 9 years ago, has now made a giant step forward in the advance for a cure to POIS. Perhaps his discovery has lead to the very doorway of a ptoential cure.

Meantime, I have been through the very problem that you have with the chest pains. Many years ago, maybe 10, I often felt that I was on the edge of a heart attack. Every time, when I went to emergency they said everything was OK and would give me a tranquilzer and everything would be OK. These are panic attacks. For one who suffers them, they are very, very real. Normally there is a base trigger. Some pain, most likely gastric, triggers a whole chain of events, that exagerte the problem not only mentally but physically.

My POIS comes with chest pains that originate from gastric problems and connective tissue inflamation in the sternum and even to some extent, spine (which radiates to the chest and arm(s). These symptoms in my case are associated with POIS, and even explained by reactions to Type I and Type IV alergic reactions to semen in the Dr. Waldinger reports. My heart too was given the OK many times. Once I learned to accept the real cause of the pains, the emergency room and panic attacks have been a thing of the past, (at least 9 yrs. FREE)

Welcome.
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Offline horizon

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11257 on: 25/01/2011 15:27:28 »
With this skinprick test, how many days after the ejaculation, should it be carried out?
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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11258 on: 25/01/2011 16:38:47 »
Quote from: horizon on 25/01/2011 15:27:28
With this skinprick test, how many days after the ejaculation, should it be carried out?


The report doesn't say. It's reported as though it were independant, but without any mention or reference at all to advance of any previous POIS session.

If one is "clean" (like a week after any POIS symptoms have disappeared), the reaction would start from scratch I suppose. Likewise we could assume that if one was at some point "in POIS", it would sort of be like having an "O" while still in POIS.

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nick2k22

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11259 on: 25/01/2011 18:48:35 »
Quote from: demografx on 25/01/2011 07:32:37
Her final note back to me was terse and said they cannot help.

The medical establishment in America is profit driven, worried about liability, and subsequently small minded in my opinion.

Alot is explained in the contraceptive article, and it was a great article.

Testosterone undulate + a progestin/progestongen(same thing basically) = highly efficacious, well tolerated male contraceptive.

This is very intriguing because if sperm allergy is truly the cause of POIS, reducing/eliminating the sperm should cause a drastic loss of symptoms in my estimation.

ALSO, this would explain the article from 2002 about the post coital headaches relieved by norethisterone(a prgestin/progestogen).
AND it would explain the testosterone reduction of symptoms people have on the forum.

It's a pretty elegant solution until a more permanant solution is found IF indeed it works.

Both Testosterone undulate plus various progestin/progestogen's are available for prescription if you guy's have any open minded doctors. 

It would be interesting to hear about.

Also, I was thinking that the  hyposensitivity therapy could still be carried out while taking this hormone medication to more permanantly immunize you. 

I called some allergen clinics and I'm not going to pay outrageous amounts every week to get them to do my shots.  But I did pick the allergen clinic's brain.

With what I've found out they inject approximately .1 to .5 cc(which = 1ml) of diluted antigen subcutaneously(fat, NOT BLOOD).  If you do the math from Waldinger's article of a one in 40,000 dilution to start and ending up one in 280 over 2 or 3 years, you can get the correct sample calculations.
You need a micropipette to make the dilutions and store the samples in your freezer (at 4 degrees).
I have no money because I am in grad school but if I had money I would do this and write a blog detailing exactly how to do this/get the supplies etc.
My stepmother is also a phd in molecular biology so any lab related advice I could ask her about. 
I think we could do this for under 500 bucks.
Where/how can we get grant money?

These are all just theories, however very intriguing.
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