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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6451262 times)

Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15875 on: 26/03/2012 01:59:18 »
Thank you Vincent Marcus and daveman for your quick responses. So essentially the best remedies that we know up until now for POIS symtoms are taking an anti-histamine like claritin, niacin (flush kind), adequate sleep and cardio?
Please confirm or add other remedies.

Mr.cool, here's a list I've made of treatments that I know to have helped mutlitple POIS sufferers:

Niacin (with flush), relora, fenugreek (with garlic), garlic by itself, saw palmetto, phosphatidylserine, antihistamines such as claritin and levocetirizine, testosterone patches, stimulants such as adderall and concerta, sublingual immunotherapy(SLIT), imitrex, and alcohol (me and at least one other guy).

Also here is the link to my treatment summary so you can see everything that works for my POIS symptoms in detail.  http://poiscenter.com/forums/index.php?topic=81.msg3513#msg3513

 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15876 on: 26/03/2012 02:03:18 »
Excellent summary, Vincent Marcus! Thank you.
 

Offline Contributor

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15877 on: 26/03/2012 12:49:13 »
Guys, this is a great community. I really like what you are doing here.

I read through a lot on this site. I understand exactly what you are talking about.

For me it means mental fog and emotional irritability and restlessness for about 2-3 days after orgasm. It might not be as bad to put me to bed, but it is still quite limiting and decreasing my quality of life.

One supplement that I tried and worked some was Saw Palmetto tablets. It seemed to decrease symptoms. It also made me less anxious. I did not try much else. It seems that Niacin in the Nicotinic Acid form is quite popular here on the forum. I might give it a try. It might be hard to get it where I live however.

However, I found other ways that helped me to decrease my symptom by a half. and this could be enriching to the discussion that is going on here. In my opinion POIS is a chain of complex of processes. And these are linked in a feed-back loop. I see a person as a body/soul/spirit and see that we are so complex that it is impossible to pinpoint one specific thing for which we would drink this pill and would be ok since then. Although I wish it were so. However, I found it useful to be able to break or diminish some of the links in the chain and by this get a relief.

So my condition improved really without any medication. My emphasis is on thinking and stretching (not exercise). 

Thinking - I checked what I am thinking during orgasm - is it guilt, bad past/present relationship or a happy feeling? Some feelings were there but one is not fully aware. It took me stopping for a sec and asking: what does this situation mean to me? what am I thinking?  It was different in different situations and the severity of POIS was dependent on it. I even tried, when doing it myself, to play a comedy in the background or play a recorded girl laugh during orgasm. And it made a difference. So I see the emotional state to influence my severity of POIS. Maybe source? I do not know. It would be great to hear you experience in this area.

Second, and this was major for me, are stretching exercises, esp. for pelvic floor and deep abdomen muscles. The coccyx muscles are included in this. There is a set of stretching exercises that I do after every orgasm. Takes about 5 minutes, but the effects are proven to me during past 3 years. If I do them within 5-10 minutes after orgasm, I get about 50% relief. If I do them after i cool down, the relief is lesser. However, if I do not do them at all, I get quite POIS symptoms for the next 2-3 days. The way you can check is try to orgasm in different position - les say sitting down, or standing. You might get different degrees of symptoms afterwards. at least i did. Please share your experience if you can.

So regarding exercise, there are two things - loosening of pelvic floor, and Iliopsoas muscles and  strengthening the deep skeletal or vertebrae muscles, esp. in the abdomen area. Do you guys have a round belly, or pains in the lower back? I did. And one of the big reasons was the week deep abdomen muscles. But do not confuse them with abs. Those are on the surface. Even people with great abs can have weak deep muscles. Whole another topic is the coccyx (tailbone). During ejaculation the muscles around it become pretty tight. It is heavily enervated. I read about case when the tailbone became dislocated and the symptoms were showing up in the neck problems, headaches and mental confusion. Seditary workstyle comes to mind that puts pressure on this area as well. Did anyone have that region checked for tenderness? One of the effects of the exercise is loosening tension in the butt muscles and so in the tailbone as well. That is when I feel a lot of relief. My neck muscles loosen as well then, although i do not stretch them directly. I have done this few streching exercise for 3 years now. some of the effects took a few months to develop. If there is interest I can describe the stretching exercise or discuss this further.

It is interesting to me that one of the effects of Nicotine acid (niacin) is dilating the capillaries. I suppose it is not only neck but the whole body, including pelvic region. Maybe that is similar to what stretching does. Just thinking out loud. I read interesting info on one medical site, that Nicotineamide (called Niacin, but not nicotine acid one) does not dilate capillaries as much. That would confirm what other were writing that this amide does not work as well for pois control.

Looking forward to more discussion and learning from each other. I see light at the end of tunnel. :)
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15878 on: 26/03/2012 18:55:50 »
I just want to say the reddit post is ready and it is going to be up today in next couple of minutes.
Just hoping a couple  people could register on reddit so as to answer question my name is (poisguy) Mellivora(2sexy4mybody)

I wanna say thanks to Mellivora,Nordnurse and Demografx, and daveman for making this happen.

this is a copy of the post.
I am a guy with a rare, little-known sexual illness. Its so life-ruining that one sufferer of it decided to be castrated to seek relief and start progressing with his life. You might be able to help. AMAA

15 years ago my life was turned upside-down. It was Christmas 1997. I'd just slept for 17 hours straight and when I woke up I still felt like I'd been hit by a truck. My sinuses were blocked, my eyes felt like they were bulging out their sockets, my memory was lagging, I had a sore throat and diarrhoea. I realised I was having difficulty thinking. All I wanted to do was close my eyes and sleep. I thought it was bad flu or some other virus. Doctors couldn't diagnose me as my lab tests were all ok. I was a hard-working and I suppose high-achieving guy. I don't think I'd taken a sick day in my life up to that point but I ended up having to have 4 weeks off work. And that was just the beginning

Over time , I came to realise that the symptoms appeared whenever I ejaculated (sex, masturbation or nocturnal emissions). It turned out that that Christmas 15 years ago was my introduction to Post-orgasmic Illness Syndrome, a rare and totally life-altering disorder.

POIS causes severe tiredness, cognition problems, mood problems, muscle aches and feelings of fever to name just a few symptoms. In the beginning, for me it would last about a month from a single ejaculation. Typically it lasts 5-14 days. Abstinence from sex/masturbation gives the only relief but that's difficult to maintain. Some men find they are never symptom-free as even if they abstain from sex or masturbation they get a nocturnal emission in their sleep before their symptoms can subside. This is a life-ruining illness affecting work and relationships. When I am symptomatic I often avoid meeting friends so they don’t see the familiar, sociable part of me disappear into this quiet,spaced-out person who has nothing to contribute to the conversation. In the gaps between my symptoms, I'm a normal, intelligent, motivated and genuinely happy guy. I've met some great girls in my life and even started relationships with some but I wasn't able to sustain them . I'm nearly 40 now. I'd Like to settle and have kids but being more than friends with a girl affects my health and life too much.  At least a couple of sufferers have openly contemplated suicide, I can definitely see how it can drive people to this. Sufferers typically feel they can't talk about their condition and it consumes them with hopelessness and a sense of isolation.

One guy, an educated professional with an advanced degree (which he got before his POIS started) took the drastic measure of castration! He was so disabled by POIS that he had his testicles and seminal vesicles removed and his ejaculatory ducts cauterised. It took him years to find doctors willing to do the procedure and had to travel to multiple countries to complete it. He succeeded in becoming POIS free and with the help of testosterone replacement therapy and other medications has been able to resume his life. The drastic action he took illustrates just how bad POIS can be.

I did countless hours of research trying to figure out what was wrong with me. Doctors weren't able to help. After a few years,  I  came across an online forum started by people who had what I had. It was amazing to find out I wasn't the only one going through this.

We still don't  know what causes POIS. A doctor in the Netherlands first described Post-Orgasmic Illness Syndrome in 2002. One theory is that its an auto-immune reaction to our own semen - a sort of allergic reaction. Little research has been done though. 

Despite the suffocating straitjacket of this illness there is some amazing positivity on our forums. We've managed to get POIS listed in the most respected rare disease databases - The National Institutes of Health in the USA and Orphanet in Europe and have done much to raise the profile of POIS. The man who underwent the castration was profiled in a tv documentary on The Learning Channel.  Another guy is to be the subject of a medical documentary, to be aired on ABC, Australia in the next month.  We are trying to help ourselves and doing whatever we can to save future sufferers from having to experience POIS.

What we really need is a dedicated medical research programme. Its difficult to openly fundraise for this because most of us are concerned about the ramifications of going public with a condition like this. After years of having no definite direction to go in, we've finally found a way to do it but we only have ONE WEEK LEFT!
Through the National Organisation for Rare Diseases (NORD) we are trying to raise enough money for a research grant for our condition. So far, all the money donated has been from POIS sufferers. We have collected around $6,000 from our personal donations, and a further $17,000 in pledges. The minimum amount required for the research grant is $33,500. All of those pledges will be converted into donations once the combined total reaches that magic $33,500.

One of our forum members noticed there have been some incredible life-transforming stories of people using reddit to fundraise. I'm here to ask for help. We have 1week to meet our funding deadline this year. If we don't make it we have to wait another year. We've lost enough of our lives to this already.  I know that crowd-sourced funding can be incredibly powerful - lots of small donations add up!  Every cent counts. If you can help us by making a small donation, the place to do it is the National Organisation of Rare Disorders website here:


https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3
(Please select 'Post-Orgasmic Illness Syndrome' from the drop-down list under "research fund")

You can read more about the NORD grant program here:
http://www.rarediseases.org/medical-professionals/research-grants/policy

Visit our forums are here:
http://www.thenakedscientists.com/forum/index.php?topic=6576.0
and here:
http://www.poiscenter.com/forums/index.php

Read about Charity Navigator, the leading independent charity evaluator, here:
http://www.charitynavigator.org/
(Please check out NORD’s evaluation on this site – you’ll see why we have chosen NORD to administer this desperately needed POIS grant.)


Thank you for reading this!


Here are some quotes from some of our members (these are taken from actual forum posts)

my professional life is getting wasted (Currently unemployed, I actually fear employment now), my marital life is getting wasted (No wife, not even a possible prospect), my social life is getting wasted and even my Dog has been starting to stare at me in weird manners lately..I feel he's trying to tell me sometimes....: WHAT THE HECK IS WRONG WITH YOU MASTER?

I look at it this way. POIS took far too many years of my life. I made no progress for about 10 years, following the completion of a graduate degree. Anything I achieved before that was based on near total abstinence. That's really difficult to maintain in college and shows the kind of iron willpower I had.  Then I fell off the wagon and I've been in a relationship for many years which has made abstinence impossible (and it was never terribly desirable anyway ).  In that time my brother who doesn't have POIS and started out with about equal intelligence based on IQ tests at the start of puberty (we both scored over 150) learned 3 languages and got 2 masters degrees. It's not that POIS has made me stupid but it's taken away the point of trying to learn new things as I've known that 1) I would forget the material quickly 2) I'm too tired to apply most of it. So I have a constant reminder of the effects of POIS on my life. When you put a lost decade into perspective, it's difficult to not feel huge disappointment that my life stalled for so long. When you leave college you don't believe that the best and most productive years of your life will be written off but that's how it's worked out. Anyway, can't dwell. Onwards we march   

I've managed to get myself a job, starting next week, and I'm really worried that either;
- I won't be able to perform, and that I'll start to fail at the job
- I set my sights too low when I applied, and that I'll feel completely unfulfilled.
I program in C++ for some of my uni work, I can just about read and make sense of it and write some basic programs, whilst out POIS, soon as POIS I lose all ability to do any real work and usually sit there gazing at the screen as though I'm reading hebrew.


And a message from "Demografx", the moderator of one of our forums:

"When I emerged from a suicidal depression (over a lifetime ruined by POIS,) I immersed myself in the POIS forum. The POIS forum gave me MEANING – finally -- a burning passion developed in me to FIGHT this 18-headed monster the only way I knew how. The forum has become a Sacred Mission for me."

POIS eats away at your spirit. It destroys your sanity.

Please – if you can – donate to our research grant fund! Your money will be handled with complete care, honesty, and respect -- by a most wonderful non-profit organization.  And – most importantly – you will have helped the countless men (and their families) whose lives have been utterly broken by POIS.

Thank you, from the bottom of my heart!

« Last Edit: 26/03/2012 20:28:23 by CCconfucius »
 

Offline nathan123

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15879 on: 26/03/2012 19:18:49 »
Hi everyone, My English is not good.  Now I am posting my symptoms of POIS and treatment taken by me and results thereon.

1) After Masturbation: Within one hours I found the following symptoms on the first day:
Hay fever, Difficult to sleep, Mental Fatigue, Sensation(feeling like something imbalance) in right side of my head, Runny nose, Anxiety, Difficult to speak, guilty feeling, feeling ashamed to talk with girls,
These symptoms will gradually decrease in 5 to 6 days.

History: My present age is 23.
I am having this problem from the past 7 years.  From the past 6 years, I thought this is migraine or something related to psychology and I am not aware that "0" has a connection with this problem.  Four months back I realised that these problems are coming after "o" and I though it is because of excessive masturbation.  Fifteen days back I came to know that it is not a result of excessive masturbation and it is a POIS.

Treatment taken and results:
a) For first 6 years (assuming this problem is migraine or something related to psychology)

i) Yoga Class: I gone to yoga class for one month.  By this I feel little improvement in the problem and symptoms will exist for 3 days and once again it appears.  I am confused at this time how it is possible for a solved problem come again.  so I quiet Yoga

ii) Joined Meditation class: Then I joined Meditation class.  After attending the 10 days course, the above symptoms disappeared for 3 months.  (I would like to mention that I had "0" in these 3 months ).  I thought the migraine problem was solved.  But unfortunately, these problems started again.  Hence, I lost hope in mediation.

iii) Then I joined Hypnosis course: First I attended the Hypnosis class and learned Self hypnosis and affirmation technique.  These helped the above symptoms decreased to 50%.  Then, I am more interested in Hypnosis to solve my problem 100% and attended personal Hypnosis counseling session.   When I went to personal hypnosis counseling I had the above symptoms.  He took one hour to take me into trance and given affirmations to get away from Headache, depression.  Surprisingly, all my symptoms are disappeared 100% after the session and I was free from this symptoms for next 2  months (even though I masturbated at this time.) Then again I got this problem.  At this time my education completed and I got a job in a software company.  I worked in half mind and not had enthusiasm in work.

After 3 months again I gone for personal counseling session with the hypnosist.  Like last time, all my problem resolved 100% in one session and I was free from POIS for next 1 month.  As earlier again I got the problem of POIS. 

I lost hope in all the treatments, and for next 6 months I not did anything and suffered a lot from this problems.

iv) Then in the internet, I read about EFT (Emotional Freedom Technique), I got attracted to it and attended one workshop.  As like other methods I had tried, this also helps me to recover 100% from POIS for one month and it got started again.

v) Later, I consulted Astrologer and he give me some inputs to recover from the problems in life.  I tried his methods of lifestyle, but nothing worked for me.

vi) At this time, I assumed that this is not a psychological problem rather it is a physical related problem.  Hence, first I went for Ayurvedic physician.  He told me that I have VATA imbalance in my body and because of it I had the above symptoms. (Dr. and I not aware this relates to Sexual activity / POIS). He prescribed herbal medicines and nothing worked for me.

vii) Then, I went to neurologist and I explained my symptoms and he told me that it is migraine and prescribed some medicine (I think sleeping tablets and tablets for recover from depression - these will be given for recover from migraine).  This reduced my symptoms.  But I googled the prescribed medicine and found it has lot of side effects and hence I quit it.   

viii) Then, I went to ENT specialist. He suspects it as a Sinusitis and told me for Sinus xray.  But it was normal and he told it is psychological problem and prescribed naproxin tablets.  I took this for 15 days and no improvements found.  I quit this.

ix) Then my friend referred for Panchakarma treatment (It is a unique ayurvedic treatment) Ayurvedic physician suspects the problem as migraine and he prescribed for Nasya theraphy (Panchakarma treatment for migraine -Putting herbal oils in to nostrils) for 10 days.  During this days, as I require to go to clinic in the early morning I decided to quit masturbation for 10 days. After this theraphy,i.e. on 10th day  I recovered 100% from this symptoms and I felt finally I released from this hell. But on the next day i masturbated. (in a very good mood thinking my problem has disappeared completely) . After masturbation within 10 minutes I noticed this symptoms is coming again and at this time I came to know that this problem is related to sexual activity. I took 6 years for understanding the problem.

x) Then I was eager to confirm whether this is a sexual problem or not.  Hence I started masturbating once in fifteen days.  I noticed after 4 / 5 days of masturbation, my problem disappeared and after masturbation this is coming again.  I concluded that it is side effects of Excessive Masturbation. So, I went to a local Sexologist, he given lecture about Sex of one hour and told me that I need to take herbal medicine for 3 months and quoted a very huge amount.  I checked his herbal products in Google and found that these are the herbal products given for premature ejaculation /sexual weakness. Hence, I rejected his quote and I purchased similar herbal products of other companies by myself in over the counter stores.  I took this medicine for 3 months , but there was no improvement in me. 

xi) Next I got attracted to Reiki (healing technique) to overcome this problem.  In Reikhi master will give initiation, after initiation for next 15 days my problem has disappeared 100% (In these 15 days I masturbated 4 days, even though the POIS not came).  After 15 days gradually I noticed symptoms of POIS.

xii) Then I searched the symptoms on the net for 4 to 5 days.  On the 5th day, I came to know that researchers has named this problem as POIS. At this time, I came to know that this is not a excessive masturbation rather POIS.  Then after seeing case study, I suspected allergy in me and went to physician. He ordered of DC, EC, ESR, AEC blood test.  The result is normal in all.  But, my absolute eosinophil count is 610 whereas the normal level is 350.  Doctor told that it is due to auto immune deficiency and prescribed me Diethylcarbamazine Citrate and Chlorpheniramine Maleate Tablets.  From the past one week I am taking this and found no improvement yet.

Proposed treatment in next 15 days:
a) Going to again with a hypnotist as now I know the exact cause of this problem PoIS and hoping for the best.
b) Today I thought of about chicken pox. I had a severed chicken pox in my childhood.  I read in the net that, the chicke pox has a long terms effect in some cases and the virus caused for Chicken pox may remain inactive in the spinal cord and it will become active when our immune system is low.  Now I am thinking whether there is a problem in this and wanted to do research on this for next 5 days.

Conclusion:
From the above long quote, I summarised as
a) It is a partly psychological and partly physical related issue
b) During last 7 years, I noticed after a new treatment is taken initially this problem is solved 100% for 1 to 2 even though I had "0" at that time.  I thought in the above psychological treatment taken by me, they give positive thoughts from overcoming this problem and I followed their steps clearly initially.  As times goes I thought I got bored up to follow those steps and hence the problem is coming again.

Thank you very much for reading my long quote.

Further, I would like to mention that it is a my second day after "o" and as english is not a my mother language, I find difficulty in writing quote here whereas if I would have written this quote at the 5th or 6th day after "0",there will be a dramatic improvement.  This is because of POIS and we need to remove it at any cost in 2012. 



 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15880 on: 26/03/2012 19:42:12 »



Contributor, and nathan123, welcome to the POIS thread of The Naked Science Forum!  We believe that 2012 is POIS' Breakthrough Year! We hope to launch serious POIS Medical Research! A great time to be here!




**(If you have any technical questions, please feel free to PM (private message) Daveman or me -- go towards the end of this welcome message (after the 5 available research articles are described) for instuctions on how to send PM. We'll be happy to explain!)***


If you haven't already done so, but would like to like to join the new forum,  send "daveman" a PM here at the Naked Science Forum -- "daveman".  He'll reply to you.


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

Our new POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
Just click HERE first, and then look for "CHAT" button towards top of page, 6th button to your right!


Our new POIS Forum - architectural genius: "daveman" - for detailed subject-by-subject discussion!
http://www.POISCenter.com/forums/index.php
Our 4-year-old POIS thread here at Naked Science Forum will also always remain open for newcomers, for general unstructured discussion, and historical research of the 10,000+ postings here since 2007.

The Learning Channel's (TLC)  feature TV presentation on POIS, featuring our member here at this forum, "Animus". It was aired on May 22, 2011. Here is a link to the YouTube file for the POIS  TV documentary, "Desperate Measures":

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

The POIS Information Website is home to the famous POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.

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:


Post Orgasmic Illness Syndrome "POIS": Case report

Authors:
Abdalla M Attia*, Magda H Al-Ziny, Hossam A Yasien
*Corresponding author: Andrology Unit, Minoufiya University, Shibin El Kom, Eygpt

For more info, check out emi_b's  SMF POIS thread:
http://poiscenter.com/forums/index.php?topic=191.0;topicseen


Available Upon Request:

1. and 2. POIS Research Studies, 2011

These 2 papers reveal Dr. Waldinger's POIS autoimmune hypothesis and suggest one possible avenue of treatment.

3. 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.

   
4. 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


5. 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


How to get any or all of the above 5 studies: send me or "daveman" a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and we'll send you back the PDF(s).

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.


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'! "

It can be very  helpful to you when dealing with medical professionals to point out the
POIS' official listing, as recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research
:


And in Europe: Orphanet now lists POIS on their website! - Click here!

POIS also appears in credible medical 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 over 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 our pages have been read nearly 2,000,000 times! Not bad for a rare malady!



SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: more than 4 years' worth of posts (over  10,000 posts!) from 200+ Forum members, and an additional 200 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#.

 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15881 on: 26/03/2012 23:59:31 »
I just want to say the reddit post is ready and it is going to be up today in next couple of minutes.
Just hoping a couple  people could register on reddit so as to answer question my name is (poisguy) Mellivora(2sexy4mybody)

I wanna say thanks to Mellivora,Nordnurse and Demografx, and daveman for making this happen.

this is a copy of the post.
I am a guy with a rare, little-known sexual illness. Its so life-ruining that one sufferer of it decided to be castrated to seek relief and start progressing with his life. You might be able to help. AMAA

15 years ago my life was turned upside-down. It was Christmas 1997. I'd just slept for 17 hours straight and when I woke up I still felt like I'd been hit by a truck. My sinuses were blocked, my eyes felt like they were bulging out their sockets, my memory was lagging, I had a sore throat and diarrhoea. I realised I was having difficulty thinking. All I wanted to do was close my eyes and sleep. I thought it was bad flu or some other virus. Doctors couldn't diagnose me as my lab tests were all ok. I was a hard-working and I suppose high-achieving guy. I don't think I'd taken a sick day in my life up to that point but I ended up having to have 4 weeks off work. And that was just the beginning

Over time , I came to realise that the symptoms appeared whenever I ejaculated (sex, masturbation or nocturnal emissions). It turned out that that Christmas 15 years ago was my introduction to Post-orgasmic Illness Syndrome, a rare and totally life-altering disorder.

POIS causes severe tiredness, cognition problems, mood problems, muscle aches and feelings of fever to name just a few symptoms. In the beginning, for me it would last about a month from a single ejaculation. Typically it lasts 5-14 days. Abstinence from sex/masturbation gives the only relief but that's difficult to maintain. Some men find they are never symptom-free as even if they abstain from sex or masturbation they get a nocturnal emission in their sleep before their symptoms can subside. This is a life-ruining illness affecting work and relationships. When I am symptomatic I often avoid meeting friends so they don’t see the familiar, sociable part of me disappear into this quiet,spaced-out person who has nothing to contribute to the conversation. In the gaps between my symptoms, I'm a normal, intelligent, motivated and genuinely happy guy. I've met some great girls in my life and even started relationships with some but I wasn't able to sustain them . I'm nearly 40 now. I'd Like to settle and have kids but being more than friends with a girl affects my health and life too much.  At least a couple of sufferers have openly contemplated suicide, I can definitely see how it can drive people to this. Sufferers typically feel they can't talk about their condition and it consumes them with hopelessness and a sense of isolation.

One guy, an educated professional with an advanced degree (which he got before his POIS started) took the drastic measure of castration! He was so disabled by POIS that he had his testicles and seminal vesicles removed and his ejaculatory ducts cauterised. It took him years to find doctors willing to do the procedure and had to travel to multiple countries to complete it. He succeeded in becoming POIS free and with the help of testosterone replacement therapy and other medications has been able to resume his life. The drastic action he took illustrates just how bad POIS can be.

I did countless hours of research trying to figure out what was wrong with me. Doctors weren't able to help. After a few years,  I  came across an online forum started by people who had what I had. It was amazing to find out I wasn't the only one going through this.

We still don't  know what causes POIS. A doctor in the Netherlands first described Post-Orgasmic Illness Syndrome in 2002. One theory is that its an auto-immune reaction to our own semen - a sort of allergic reaction. Little research has been done though. 

Despite the suffocating straitjacket of this illness there is some amazing positivity on our forums. We've managed to get POIS listed in the most respected rare disease databases - The National Institutes of Health in the USA and Orphanet in Europe and have done much to raise the profile of POIS. The man who underwent the castration was profiled in a tv documentary on The Learning Channel.  Another guy is to be the subject of a medical documentary, to be aired on ABC, Australia in the next month.  We are trying to help ourselves and doing whatever we can to save future sufferers from having to experience POIS.

What we really need is a dedicated medical research programme. Its difficult to openly fundraise for this because most of us are concerned about the ramifications of going public with a condition like this. After years of having no definite direction to go in, we've finally found a way to do it but we only have ONE WEEK LEFT!
Through the National Organisation for Rare Diseases (NORD) we are trying to raise enough money for a research grant for our condition. So far, all the money donated has been from POIS sufferers. We have collected around $6,000 from our personal donations, and a further $17,000 in pledges. The minimum amount required for the research grant is $33,500. All of those pledges will be converted into donations once the combined total reaches that magic $33,500.

One of our forum members noticed there have been some incredible life-transforming stories of people using reddit to fundraise. I'm here to ask for help. We have 1week to meet our funding deadline this year. If we don't make it we have to wait another year. We've lost enough of our lives to this already.  I know that crowd-sourced funding can be incredibly powerful - lots of small donations add up!  Every cent counts. If you can help us by making a small donation, the place to do it is the National Organisation of Rare Disorders website here:


https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3
(Please select 'Post-Orgasmic Illness Syndrome' from the drop-down list under "research fund")

You can read more about the NORD grant program here:
http://www.rarediseases.org/medical-professionals/research-grants/policy

Visit our forums are here:
http://www.thenakedscientists.com/forum/index.php?topic=6576.0
and here:
http://www.poiscenter.com/forums/index.php

Read about Charity Navigator, the leading independent charity evaluator, here:
http://www.charitynavigator.org/
(Please check out NORD’s evaluation on this site – you’ll see why we have chosen NORD to administer this desperately needed POIS grant.)


Thank you for reading this!


Here are some quotes from some of our members (these are taken from actual forum posts)

my professional life is getting wasted (Currently unemployed, I actually fear employment now), my marital life is getting wasted (No wife, not even a possible prospect), my social life is getting wasted and even my Dog has been starting to stare at me in weird manners lately..I feel he's trying to tell me sometimes....: WHAT THE HECK IS WRONG WITH YOU MASTER?

I look at it this way. POIS took far too many years of my life. I made no progress for about 10 years, following the completion of a graduate degree. Anything I achieved before that was based on near total abstinence. That's really difficult to maintain in college and shows the kind of iron willpower I had.  Then I fell off the wagon and I've been in a relationship for many years which has made abstinence impossible (and it was never terribly desirable anyway ).  In that time my brother who doesn't have POIS and started out with about equal intelligence based on IQ tests at the start of puberty (we both scored over 150) learned 3 languages and got 2 masters degrees. It's not that POIS has made me stupid but it's taken away the point of trying to learn new things as I've known that 1) I would forget the material quickly 2) I'm too tired to apply most of it. So I have a constant reminder of the effects of POIS on my life. When you put a lost decade into perspective, it's difficult to not feel huge disappointment that my life stalled for so long. When you leave college you don't believe that the best and most productive years of your life will be written off but that's how it's worked out. Anyway, can't dwell. Onwards we march   

I've managed to get myself a job, starting next week, and I'm really worried that either;
- I won't be able to perform, and that I'll start to fail at the job
- I set my sights too low when I applied, and that I'll feel completely unfulfilled.
I program in C++ for some of my uni work, I can just about read and make sense of it and write some basic programs, whilst out POIS, soon as POIS I lose all ability to do any real work and usually sit there gazing at the screen as though I'm reading hebrew.


And a message from "Demografx", the moderator of one of our forums:

"When I emerged from a suicidal depression (over a lifetime ruined by POIS,) I immersed myself in the POIS forum. The POIS forum gave me MEANING – finally -- a burning passion developed in me to FIGHT this 18-headed monster the only way I knew how. The forum has become a Sacred Mission for me."

POIS eats away at your spirit. It destroys your sanity.

Please – if you can – donate to our research grant fund! Your money will be handled with complete care, honesty, and respect -- by a most wonderful non-profit organization.  And – most importantly – you will have helped the countless men (and their families) whose lives have been utterly broken by POIS.

Thank you, from the bottom of my heart!



CCconfucius,

FANTASTIC JOB!

THANK YOU!!

Demo

 

Offline victor.kons

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15882 on: 27/03/2012 08:18:08 »
Hi Guys,

I have a question. A question what is not POIS?

In my understanding POIS is complex of weird symptoms following after orgasm and only after orgasm, e.g. you can't get those same symptoms using any different actions.

Now if some person have these symptoms after _any_ heavy physical activity and after the orgasm, will it be the POIS or not?
 

Offline Omen 30

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15883 on: 27/03/2012 10:12:58 »
Hello everyone...Its been long I haven't posted on pois...oh what a month I had full of energy and positivness...the whole last month I didn't have a single orgasm...I didn't have any negative thoughts...I changed a lot of things in my everyday routine...I could take decisions easily...some very good days spent after many years...I used to recollect my childhood days in the last month...once I had a wet dream also but the effect lasted only for a day...and after living such a good life yesterday I had sex and now I am in pois...today when I am writing my month long experience I am lying here on my sofa with no energy even to get up and walk around...just wanna lie down here feeling lazy...the quality of life we poisers are living is very low and we people are very strong that we are passing thru this illness and are living our day to day life...hats off friends...and god bless us all...
 

Offline Porke

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15884 on: 27/03/2012 16:55:51 »

b) Today I thought of about chicken pox. I had a severed chicken pox in my childhood.  I read in the net that, the chicke pox has a long terms effect in some cases and the virus caused for Chicken pox may remain inactive in the spinal cord and it will become active when our immune system is low.  Now I am thinking whether there is a problem in this and wanted to do research on this for next 5 days.


Interesting you say this. I had quite a severe case a year or two before my whole POIS episode began.  Could you post links where you found this information about long term effects? I cant seem to find any information on it.
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15885 on: 27/03/2012 17:13:05 »

b) Today I thought of about chicken pox. I had a severed chicken pox in my childhood.  I read in the net that, the chicke pox has a long terms effect in some cases and the virus caused for Chicken pox may remain inactive in the spinal cord and it will become active when our immune system is low.  Now I am thinking whether there is a problem in this and wanted to do research on this for next 5 days.


Interesting you say this. I had quite a severe case a year or two before my whole POIS episode began.  Could you post links where you found this information about long term effects? I cant seem to find any information on it.
That is definately a route to go, if it is not chicken pox, it could be any dormant virus. 
Is there a way to check for something like that.
i definately think we should do spinal tap and check for anomalies
how safe are those

« Last Edit: 27/03/2012 17:20:16 by CCconfucius »
 

Offline nathan123

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15886 on: 27/03/2012 18:21:27 »
@ CCconfucius:
Please refer the followings for long term effects of Chicken pox. 

http://boards.straightdope.com/sdmb/showthread.php?t=334255

http://www.livestrong.com/article/248362-what-are-the-side-effects-of-chicken-pox/

http://health.nytimes.com/health/guides/disease/chickenpox/possible-complications.html

In the above links, they have given as the chicken pox virus can remain inactive in the spinal cord and it can cause Shingles in the future.  But one thing is sure that there may be a chance of virus remaining in the body.  Now I am suspecting whether there is a link between inactive virus in the body as a result of chicken pox and POIS.  I am planning to take the medication used to heal chicken pox and I will test this for POIS with the supervision of doctor.  I will post if I got any good results soon.

Further any one of you know a Reikhi teaching institute, please take reiki 1st degree initiation (This initiation can be given only by the Reiki master).  This process will take only 10 to 15 minutes.  For me I noticed 100% free from POIS symptoms for 15 days even though I had several "o" in those days.  Further I gone for Reiki 1st degree initiation in the 2nd day after "o". When I gone there I had worst POIS symptoms . But after initiation (after 15 min), this gone 100% free for next 15 days.  As is know about the Reiki initiation, it cleanse the aura of our body (aura means spiritual layer of our body ) and it helps to gain positive energy from the universe.  Still I am in a big confusion whether POIS is psychological problem or physical problem due to virus / low immune system.

I also request one of you to take hypnosis personal counseling like past life regression / age regression etc and lets see how mind reacts to POIS after this.  Why I am telling this because after POIS, I have fatigue, sensation or feeling something like chemical imbalance  only in right side of my brain (head).  I feel my left side brain is totally free from POIS effects.  Further, in POIS period, I get excessive dreams.  It seems my sub-conscious mind affected by orgasm. As per Hypnotherapy theory, right side of the brain is sub-conscious mind which deals with automatic activities of our body like breathing, heart beats, immune system, driving skill, applying brake while driving, activities of the brain when we are in sleep, emotions, joy, negative thoughts, fear, desire and other activities of the human body which will occur automatically.  Left side of the brain is conscious mind which deals with activities done with our conscious like speaking, eating and other activities of our daily life.    I am suspecting also in this area as there may be a mental exhaustion (deep emotional affect) after "o".  If our sub-conscious mind has any misconception about sex, fear about sex / any negative feeling about the sex, then there may be a chance of mental exhaustion.  I read in some article that, after deep emotional exhaustion / disturbance, there will  disturbance in our breathing system and have some effect in our physical body.  eg: If a Child / even a adult sees a an accident / dead body with bloods coming out, it results in mental exhaustion and also have disturbance in breathing and some physical issues such as fever.  So, there may be a chance of negative thoughts / fear / misconception about Sex in our childhood / when we were in our mother womb / may be even in our past life.  Please see cases on past life hypnosis for emotions / misconception cultivated in past life and it have a result in present life.  Further, please try  (listen this mp3 daily morning and at the bed time) some of the hypnosis relaxation mp3's (it can be downloaded in the web).  It provides faster recovery from POIS i.e. within in 3 / 4 days.  In our area, hypnosis one counseling session costs around 300US$ and I will go to this after getting some savings (may be after one month).

Please post the results if any one you has tried the above methods. 
 

Offline jferr

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15887 on: 27/03/2012 20:20:47 »
Guys, sometimes I really wonder if taking all the supplements before and after sex is going to hurt us in the long term. Though for a necessary cause, we are putting the supplements in our bodies every day and producing brain chemicals as a result. We need to do this for ourselves but I hope it doesn't end up being more bad than good at the end of the day.
 

Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15888 on: 27/03/2012 20:26:18 »
Hi Guys,

I have a question. A question what is not POIS?

In my understanding POIS is complex of weird symptoms following after orgasm and only after orgasm, e.g. you can't get those same symptoms using any different actions.

Now if some person have these symptoms after _any_ heavy physical activity and after the orgasm, will it be the POIS or not?

Is it worse or qualitatively different after an O versus heavy physical activity?
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15889 on: 27/03/2012 22:43:59 »
reddit board is going and we already have about 27 comments
feel free to go over and answer questions.
Check under IAMA section
or search rare illness under IAMA section
 

Offline observercenter

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15890 on: 28/03/2012 00:05:14 »
Guys, sometimes I really wonder if taking all the supplements before and after sex is going to hurt us in the long term. Though for a necessary cause, we are putting the supplements in our bodies every day and producing brain chemicals as a result. We need to do this for ourselves but I hope it doesn't end up being more bad than good at the end of the day.

It seems with the niacin, viktor kons have had continuous success for more than 2 years. For me, it´s more than 6 months. I am not taking any other suplement, and of course, i don´t take niacin every day.

Plus, i would want to comment that i could have VERY VERY GOOD NEWS for our cause. I´ll be waiting more days(i am travelling, i did not expect to post during these days, but this exciting development has made me to post) to confirm you about this development, but it seems that a major newspaper in Spain is very interested in this POIS issue, and some prominent doctors are willing to investigate more on this too. I will explain this with more detail on the next days, when i could have more time.
« Last Edit: 28/03/2012 00:07:52 by observercenter »
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15891 on: 28/03/2012 01:45:51 »
still putting out there for those that want to answer questions, the post has gone from 27 to 344 comments and growing and number 11 on reddit mainpage.
 

Offline Stef

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15892 on: 28/03/2012 03:26:12 »
still putting out there for those that want to answer questions, the post has gone from 27 to 344 comments and growing and number 11 on reddit mainpage.
Ccconfucius and Mel -- you've done an amazing thing on reddit!
 
Hoping this brings in some great donations.  But -- even if it doesn't bring in enough for this year's grant cycle -- you two have done something even greater -- you've  RAISED AWARENESS ABOUT POIS -- BIG TIME!!!!!

I bet you'll see that the TONS of work and time you put into this will bear fruit.  You've opened the door!

Great job! :-)

Stef
 

Offline Stef

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15893 on: 28/03/2012 04:04:33 »
As of the time of this post (11:15pm, EST), Cc's and Mel's post is #1 in it's category on reddit!!

It's amazing what can be done. 

Where there's a will, there's a way!

 
 

Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15894 on: 28/03/2012 07:29:37 »
As of the time of this post (11:15pm, EST), Cc's and Mel's post is #1 in it's category on reddit!!

It's amazing what can be done. 

Where there's a will, there's a way!

 
As of the time of this post (11:15pm, EST), Cc's and Mel's post is #1 in it's category on reddit!!

It's amazing what can be done. 

Where there's a will, there's a way!

 
WOW you are right, pois is blowing up on reddit.  I tried to write a compelling story about suffering from pois to add in the comments, but it is buried at the very bottom of the 1200 + comments.  I know at least a couple people said they were going to donate, hopefully people will continue to learn about pois if the post can stay on the top of the list.
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15895 on: 28/03/2012 10:52:09 »
I just saw your post lauracostis. It was moving. Glad you were able to drop by, thanks
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15896 on: 28/03/2012 12:20:03 »
still putting out there for those that want to answer questions, the post has gone from 27 to 344 comments and growing and number 11 on reddit mainpage.
Nice work CC, thanks a lot for doing this! If only one person contributes to the NORD fund it was worth it.
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15897 on: 28/03/2012 13:46:35 »
As of the time of this post (11:15pm, EST), Cc's and Mel's post is #1 in it's category on reddit!!

It's amazing what can be done. 

Where there's a will, there's a way!

 
As of the time of this post (11:15pm, EST), Cc's and Mel's post is #1 in it's category on reddit!!

It's amazing what can be done. 

Where there's a will, there's a way!

 
WOW you are right, pois is blowing up on reddit.  I tried to write a compelling story about suffering from pois to add in the comments, but it is buried at the very bottom of the 1200 + comments.  I know at least a couple people said they were going to donate, hopefully people will continue to learn about pois if the post can stay on the top of the list.

I saw that to you gave great answer for relationship, people asked mellivora about that alot.
and your post was to damn good i hope more people see it.
I also want to give you props for getting a nursing degree with pois, the shear amount of reading you have to do will have done me in.
To much time to be tempted, and you dont have any time to recover since you have test every week,even every couple of days compare to my degree where we have test every month.

 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15898 on: 28/03/2012 13:47:25 »
still putting out there for those that want to answer questions, the post has gone from 27 to 344 comments and growing and number 11 on reddit mainpage.
Thanks, the response and and lots people actually understanding was enough for me.

Nice work CC, thanks a lot for doing this! If only one person contributes to the NORD fund it was worth it.
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15899 on: 28/03/2012 14:27:00 »
Thanks, the response and and lots people actually understanding was enough for me.
I agree, a good part is pleasant to read and the awareness is increased. There was even new POIS cases who now know what they have.Thanks again.
 

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15899 on: 28/03/2012 14:27:00 »

 

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