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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6449430 times)

Offline underwater

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3075 on: 24/01/2009 00:47:51 »
Demo--
Thanks for including your experiences with SSRI's. I don't think they are the answer either. My response was long winded because of what the psychiatrist said in the article. It just seemed a bit too optimistic, too simple. It's always an option for experimentation, but must be very carefully considered. I think it's prudent for people to look at the article critically, especially since it has been referenced in this forum. 
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3076 on: 24/01/2009 04:53:23 »
   
We cross the 200 pois cases limit. Intersting dark circles eyes symptom . I will look this tommorow.


B_Jim, we now have 100X more cases than Dr. Waldinger had!
 

Offline Londonchap

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3077 on: 24/01/2009 14:15:26 »
Hi guys. Just found this discussion board and I am thrilled to finally find people that recognise what I've been experiencing for all of my adult life. I no longer feel quite so confused and alone. My partner is incredibly patient & understanding but I must admit, I have questioned myself constantly about what is going on and why. It took me a long time to realise this isn't 'normal' but like all of you have struggled to find any explanations. This lack of answers or aknowledgement has simply added to the feelings of frustration and sadness.

I have no medical background and if I'm honest am struggling to understand most of the theories you guys have discussed, but I am in  early correspondence with some institutions here in the UK who, I am pleased to say, have not dismissed me out of hand. Apparently, there was some relevant research carried out in the UK in the mid 80s. The papers were not, unfortunately, published or indexed, but they do still exist and further investigation by a credible University professor is under way.

It may come to nothing, but I really do hope this might offer some answers and add some positive progress.
 

Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3078 on: 24/01/2009 15:46:56 »
Hi guys. Just found this discussion board and I am thrilled to finally find people that recognise what I've been experiencing for all of my adult life. I no longer feel quite so confused and alone. My partner is incredibly patient & understanding but I must admit, I have questioned myself constantly about what is going on and why. It took me a long time to realise this isn't 'normal' but like all of you have struggled to find any explanations. This lack of answers or aknowledgement has simply added to the feelings of frustration and sadness.

I have no medical background and if I'm honest am struggling to understand most of the theories you guys have discussed, but I am in  early correspondence with some institutions here in the UK who, I am pleased to say, have not dismissed me out of hand. Apparently, there was some relevant research carried out in the UK in the mid 80s. The papers were not, unfortunately, published or indexed, but they do still exist and further investigation by a credible University professor is under way.

It may come to nothing, but I really do hope this might offer some answers and add some positive progress.

Hello Londonchap, and welcome to the POIS forum. You are DEFINITELY VERY LUCKY to have found researchers
who are open to considering this condition and taking it seriously. That, as we have experienced all too often,
is truly a rarity. But after so much effort, we too are making some progress on this front. Some of us are in the
process of being diagnosed and treated by endocrinologists, who have not laughed us off or turned us over for
psychiatric care. This is a very bright and determined group of people, and we don't give up easily. We hope to
hear more from you and get further updates on your research investigations.
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3079 on: 24/01/2009 19:19:12 »
Demografx  - do you know anything or endocrologist said anything about the relationship between prolactin,dopamine and testosterone and estorgen.  acording to wiki prolactin and dopamine counteract eachothers effect and also prolacting counter the effects of testosterone and estrogen. 
 
 

Offline msl

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3080 on: 24/01/2009 22:22:24 »
hey londonchap, im in the uk too!! im from bournemouth, but am at warwick university at the moment. I have decided to go see the neurologist/sexual psychotherapist. Knowing the uk tho the appointment probably got cancelled because I want quick enough xD will find out on monday.. guess what, going through POIS =D but only myself to blame :( would you guys class yourselves as very "sexual beings" ?
 

Offline underwater

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3081 on: 24/01/2009 23:15:17 »
hey londonchap, im in the uk too!! im from bournemouth, but am at warwick university at the moment. I have decided to go see the neurologist/sexual psychotherapist. Knowing the uk tho the appointment probably got cancelled because I want quick enough xD will find out on monday.. guess what, going through POIS =D but only myself to blame :( would you guys class yourselves as very "sexual beings" ?
Hi rapidgaming--
I'm curious. I've had POIS over 20 yrs and am considerably older. I'm just wondering what a younger person suspects to be the cause. I wish I could go back in time and theorize. Do you have an inkling, or are you like most of us, totally perplexed ? Yes to your last question. I'd love to hear your thinking/intuition, even if you don't know.
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3082 on: 24/01/2009 23:31:05 »
I have found 2 things that may be of interest to you.
There is an article on page D6 of Tuesday Jan 20, 2009 NY Times on "SEx and Depression: In the Brain if not the mind" that talks about people who feel achy and depressed after sex, and talk to be given at the SSTAR meeting on  Post_orgasm fatigue in Men-A spectrum on Syndromes, by Jane Ashby, to be given on April 4.

This is a message from reasearcher i sent email.  The important thing is the SSTAR, does anyone live close to arlington virginia, that is where the meeting is.   
Hope this helps.

 

Offline Guthrie

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3083 on: 25/01/2009 00:08:38 »
talk to be given at the SSTAR meeting on  Post_orgasm fatigue in Men-A spectrum on Syndromes, by Jane Ashby, to be given on April 4.

Thanks for the info, CCconfucius!  I googled SSTAR, and found a link to their schedule, which mentions that talk, here:
http://www.sstarnet.org/download/2009040205Brochure.pdf

However, I used google to try to find 'Jane Ashby MBBS MRCP', but I wasn't able to identify who that might be.

Perhaps the SSTAR people might have a way to get in touch with her...
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3084 on: 25/01/2009 01:27:59 »
I have found 2 things that may be of interest to you.
There is an article on page D6 of Tuesday Jan 20, 2009 NY Times on "SEx and Depression: In the Brain if not the mind" that talks about people who feel achy and depressed after sex, and talk to be given at the SSTAR meeting on  Post_orgasm fatigue in Men-A spectrum on Syndromes, by Jane Ashby, to be given on April 4.

This is a message from reasearcher i sent email.  The important thing is the SSTAR, does anyone live close to arlington virginia, that is where the meeting is.  
Hope this helps.

Thanks, CCconfucius! This Arlington meeting (as well as the NYT article) confirms that our situation is getting more serious attention! We should get in touch with Jane Ashby and let her know of our forum. Do you know how we can do that?

 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3085 on: 25/01/2009 01:43:11 »
Welcome, Londonchap!

Very exciting to learn about the UK research. All of us look forward to seeing more.

Londonchap, here are some forum resources which may be helpful:

Please see "B_Jim"'s POIS Forum Summary of All Cases, here as well as others on the Web:
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video: A first!

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here. This will also enable us to work more easily with outside researchers by having more organized data available about us:
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only study on POIS by Dr. Marcel Waldinger,MD and Dr. David Schweitzer, MD.

If you want a copy (PDF), send "Pyropeach" a Private Message with your email address and he'll send you back the PDF.

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 the recipient's name, e.g., "pyropeach".


Londonchap, we're looking forward to more of your posts!
« Last Edit: 25/01/2009 02:07:23 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3086 on: 25/01/2009 01:57:33 »
B_Jim, when newcomers arrive, should we draw their attention to (1) your post and (2) Paul's post, both on Page 1? Or is that included already in your summary on Page 11?
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3087 on: 25/01/2009 02:29:17 »
talk to be given at the SSTAR meeting on  Post_orgasm fatigue in Men-A spectrum on Syndromes, by Jane Ashby, to be given on April 4.

Thanks for the info, CCconfucius!  I googled SSTAR, and found a link to their schedule, which mentions that talk, here:
http://www.sstarnet.org/download/2009040205Brochure.pdf

However, I used google to try to find 'Jane Ashby MBBS MRCP', but I wasn't able to identify who that might be.

Perhaps the SSTAR people might have a way to get in touch with her...

Thanks, Guthrie! She's also not in the SSTAR Therapists' Directory, so I just sent an email - asking how to contact Jane Ashby - to Dr. Eli Coleman, SSTAR Scientific Program Chair, who puts out the call for papers in April.

There should be enough time for us to get her to promote our forum to a perfect crowd of therapists!
« Last Edit: 25/01/2009 02:35:15 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3088 on: 25/01/2009 06:34:44 »

200 apples a day keep the Pois away.


Good one, B_Jim!  ;D
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3089 on: 25/01/2009 07:12:57 »
Counterpoints, thank you very much for Jane Ashby's contact info! And thank you again CCconfucius and Guthrie for all your help in bringing this important event and Ms. Ashby's presentation to the attention of the forum!

Below is the email I sent to Ms. Ashby inviting her to visit here and offer her our support. Hopefully, she will include the forum in her presentation at SSTAR!


Dear Ms. Ashby,
 
         Re: Your SSTAR Presentation

I noticed with great interest your presentation at SSTAR.
 
I am the moderator of a fast-growing forum for sufferers of Post Orgasmic Illness Syndrome (POIS):
http://www.thenakedscientists.com/forum/index.php?topic=6576.new#new
 
You are invited to visit and become more aware of our ability to help the 100+ sufferers who have posted here. We also have 200,000+ site views from people searching for support. Before 2007, nothing was available.
 
I hope that you can help make this forum available to your audience of therapists, researchers and the sufferers of this agonizing malady.
 
Some of our forum resources you may wish to look at:
 
Forum member "B_Jim"'s POIS Forum Summary of All Cases, here as well as others on the Web:
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009
 
Forum member "Girlwind" has created an excellent POIS Video: A first!

And filling out the POIS survey created by Forum member "Counterpoints" enables sufferers to share POIS information and details with others here. This will also enable the forum to work more easily with outside researchers by having more organized data available about us:
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only study on POIS by Dr. Marcel Waldinger, MD and Dr. David Schweitzer, MD.

A copy (PDF) is attached.
 
You might find this article in this week's NY Times of interest:
 
"Sex and Depression: In the Brain, if Not the Mind"
http://www.nytimes.com/2009/01/20/health/views/20mind.html

Best regards,
 

demografx - forum moderator
Post Orgasmic Illness Syndrome


Counterpoints, you must have a super-version of Google! ;D
« Last Edit: 25/01/2009 07:44:40 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3090 on: 25/01/2009 07:35:13 »

Demografx  - do you know anything or endocrologist said anything about the relationship between prolactin,dopamine and testosterone and estorgen.  acording to wiki prolactin and dopamine counteract eachothers effect and also prolacting counter the effects of testosterone and estrogen. 


CCconfucius, my endocrinologist believes that the testosterone patches (double dose = 10mg, 2 patches) he prescribed for me daily will bring down the high prolactin. If this doesn't work after 30 days, he will take another approach. But I already feel better (mood and libido lifted from the beginning). I'm on the patches for almost a week now.
« Last Edit: 25/01/2009 07:43:41 by demografx »
 

Offline msl

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3091 on: 25/01/2009 10:29:19 »
hey londonchap, im in the uk too!! im from bournemouth, but am at warwick university at the moment. I have decided to go see the neurologist/sexual psychotherapist. Knowing the uk tho the appointment probably got cancelled because I want quick enough xD will find out on monday.. guess what, going through POIS =D but only myself to blame :( would you guys class yourselves as very "sexual beings" ?
Hi rapidgaming--
I'm curious. I've had POIS over 20 yrs and am considerably older. I'm just wondering what a younger person suspects to be the cause. I wish I could go back in time and theorize. Do you have an inkling, or are you like most of us, totally perplexed ? Yes to your last question. I'd love to hear your thinking/intuition, even if you don't know.


Hmm well ok I don't know if i can be of much help but I guess these are the things which I think about. Well I began masturbating during puberty.. which I guess and thought at the time was normal? I think back then I was actually quite stressed out so I perhaps masturbated more than the next guy? Then I started to notice that the next day after masturbating I would feel a bit run down, so i remember thinking to myself that If i wanted to masturbate, if I had done the day before then I would not. After time this run down period began to increase until about a week and the symptoms began to be so bad that I would not masturbate. The symptoms did not warrant the intial pleasure, so i began being abstinent (but this was hardxD) particularly how there is temptation everywhere. At one point i installed an internet filter on my computer because I did not want to be tempted by anything. And for long periods of time I could manage to not even think about it, perhaps 2 months or so. But if I relapsed and did masturbate my thought process is as follows:
-well im gonna be really bad for a week now anyway..
-might as well do it again
So the case is that if i masturbate, i find it very hard to stop repeatedly masturbating after that (i remember reading something similar here by someone). This is of course different to the usual thing which happens with guys, once and then thats completely fine for them because they are "satisfied" and go to sleep. it seems with me im still unsatisfied. So for the longest time i did not masturbate but then because i was getting no sexual release i was getting wet dreams, which gave the same results for the following week. Now we reach where I am now, im weening off the prozac and I thought if i just thought "this is natural dont worry about it, its probably in your head" then it would be ok. like a therapist i spoke to said i might be "hung up" about the issue now and just try to relax. So yesterday i masturbated, and many times after that, and now i feel really bad xD huzzah! Also accompanied by feelings of guilt because although i did not view pornography, i did view the old arousing video on youtube which comes pretty close to it and i am thinking that i am some sort of "pervert" because I do not want to objectify women and I feel bad for doing so because of thoughts of this girl i am close with. But sometimes when you just feel "horny" i wonder whether it is actually possible to reason your way against something :/ I don't think im a bad guy.. I think i began masturbating more as a way to cope with stress, also when im more stressed out then its more likely i have a wet dream. Also if i eat very unhealthily that day i am more likely to have a wet dream. but as previously mentioned i relapsed yesterday. I guess i still view it as something wrong aside from the fact that it gives me negative symptoms. My guess would be that i "burnt up" myself earlier on in life and am suffering from some sort of endocrine/neurological exhaustion or something :/ I remember thinking sometihng is DEFINATELY wrong with us, recently i started thinking if i put it all behind me and just didnt get hung up about it as in "yeah masturbate, its ok" then i wouldnt feel as bad, but i still do so... i don't know
 

Offline digitalmac

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3092 on: 25/01/2009 15:45:18 »
I've had success with taking Fenugreek after seeing it recommended here. Normally my recovery period is 4-5 days. But taking Fenugreek an hour before orgasm cuts that time in half. Taking it *after* orgasm doesn't seem to have any effect.

Cutting out all caffeine and sugar has dramatically reduced the effects of POIS. I used to drink one bottled Frappucino a day, which is equivalent of 90mg of caffeine. On January 1st, I decided to cut all caffeine and sugar out of my diet cold turkey. The first two weeks were hell. Headaches and fatigue like I have never experienced (I had to take off work a few days). But after two weeks, I began to feel a change. I still feel the effects of POIS, but the effects are less dramatic and last a shorter period of time (less than 24 hours). It's amazing how a seemingly small amount of caffeine could have such a profound effect.

I'd be interested to know how many people have caffeine on a regular basis (even if just a small amount). Staying away from caffeine isn't a solution. But it definitely has helped my cope with the side effects of POIS.
« Last Edit: 25/01/2009 15:47:59 by digitalmac »
 

Offline underwater

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3093 on: 25/01/2009 16:00:07 »
rapidgaming,
Thank you for your insight--
Accumulated stress from multiple sources accompanied the beginning of POIS for me. This was when symptoms became so obvious that I had to connect them to orgasm,
most likely around age 40. Post orgasmic illness clearly affects all ages. It does not appear to resolve itself with abstinence to the extent that POIS will be diminished upon re-engagement of orgasmic activity later on. However, this is unclear to me. Some of us may have a physiological predisposition to POIS with different onset periods in life. Nevertheless, I'm quite confident that there will soon be "therapies & strategies" to diminish the effects of the illness. They may very well come from this forum. Hang in there!
 

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3094 on: 25/01/2009 16:15:20 »
Digitalmac---
Could you please go into detail about "cutting out sugar": sugar additives; sugar contained in sweets, pastries, cookies; certain fruits; sodas etc? Thanks
 

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3095 on: 25/01/2009 16:56:14 »
Recently, since about six weeks ago, I've been trying the herb Sceletium Tortuosum, to see if it could help with POIS, since I supspect that dopamine, noradrenaline (norepinephrine) and serotonin could play a role in POIS symptoms. It's major active alkaloid is mesembrine, which is a potent SSRI (1) and PDE4 inhibitor (2), which raise serotonin and dopamine and noradrenaline levels, respectively.
After having tried it several times in this period it turned out that it definitely helped lowering the POIS symptoms.
I suspect that the Sceletium that I have ordered could have been of better quality, so maybe Sceletium of better quality could turn out to be even more effective.

Maybe it can help others with POIS symptoms.

Care should be taken, not to combine it with some other psychiatric medications, especially a combination with another SSRI or an MAOI should be avoided, to avoid risking serotonin syndrome.

(1) http://patft.uspto.gov/netacgi/nph-Parser?patentnumber=6,288,104
(2) http://66.102.1.104/scholar?hl=en&lr=&q=cache:7nUugwT9XxkJ:preprint.chemweb.com/CPS/medichem/medic/984133851/article.pdf

Disclaimer: This is not a medical advice. These are just my thoughts on this subject. If you decide to take any action upon reading this, it is your own decision. Therefore I can not be held responsible for any consequences.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3096 on: 25/01/2009 17:10:07 »

For those saying that it's a physiological issue, I say that it most certainly is not.


digitalmac, please tell us what your non-physiological take on POIS is! (I asked you this before, on September 12, right after you posted the statement above, but never received a reply).
Thank you.
« Last Edit: 25/01/2009 17:36:25 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3097 on: 25/01/2009 17:16:31 »

Cutting out all caffeine and sugar has dramatically reduced the effects of POIS.

I'd be interested to know how many people have caffeine on a regular basis (even if just a small amount). Staying away from caffeine isn't a solution. But it definitely has helped my cope with the side effects of POIS.


I would also love to see a caffeine profile of this forum. I have attempted quitting on dozens and dozens of occasions, unsuccessfully. My psychiatrist concluded to me just this last week that "You probably just need it." 1-3 cups/day plus sugar, both cut back dramatically from previous years.
« Last Edit: 25/01/2009 17:43:22 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3098 on: 25/01/2009 17:52:15 »
Forum tech disruptions

Everyone is frustrated, I've written complaints.

For now, hitting the "Refresh" button is all I can suggest! :(

UPDATE: I was informed today that they "...disabled the right hand bar for logged in users as it was apparently causing so much problems.... the plan is to see how it goes for a couple of weeks. Are there any other questions?" I replied by asking if the need to hit "Refresh" all the time to see an accurate screen could be fixed now instead of in a couple weeks.

Thanks for you patience, everybody!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3099 on: 25/01/2009 17:59:53 »
LEVITRA

I reported recently that my Levitra-POIS-treatment-effectivenesss dropped from 75%+ to 50%...or lower: the last two disappointing rounds might be much lower! One thing I just realized is that - over one year ago - when it was 75%+ it was combined with testosterone! Will know more in the next few weeks after more lab work and endo consultation.

NOTE: This is not medical advice! If interested, see your physician.
« Last Edit: 25/01/2009 18:02:41 by demografx »
 

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Re: Post Orgasmic Illness Syndrome (POIS)
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