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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6451285 times)

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2275 on: 04/12/2008 04:12:07 »
Demografx, I'm looking forward to have the results of your "excursion" to the endocrinologist. Tremendous effort ! I know you spoke in your name only, but did you give them our answers to the questionnaire ? Thanks.

Thanks a lot, Martin. I spoke both for myself and for the forum. The endocrinologist who I hope will assist the forum is an influential colleague of the doctor I saw, whom I still yet need to contact. If I can get this colleague interested in our forum, I am hoping that he will get a grant for a POIS study. In the past, this colleague has been very successful in obtaining grant money for medical research studies on other ailments.

I think initially I will mention to the colleague the questionnaires, the video and our forum website, as I did with Dr Waldinger (when Dr Waldinger showed interest I sent him Counterpoints' and B_Jim's compilations).

If the university colleague shows interest in working with us, I will show him, as I did with Dr Waldinger and as Counterpoints did with the MD/PhD, the questionnaire responses, and Counterpoints' and B_Jim's summaries.
« Last Edit: 04/12/2008 04:25:46 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2276 on: 04/12/2008 04:17:13 »
I am re-posting the university endocrinologist's question yesterday to all of us, in case it was lost in my long, rambling writeup!

Question to us from the endocrinologist:
"Does anyone here have experience with tricyclic antidepressants, such as Tofranil, and POIS?"
« Last Edit: 04/12/2008 04:26:42 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2277 on: 04/12/2008 04:33:11 »
Thanks, CP. But wouldn't a researcher(s) typically devise their own questionnaire for a study?

An MD PhD researcher sent me some of his questions.  Many similar questions were included in the questionnaire.  Also, as Chris (of Naked Scientists) said in an early letter you posted, we often need to do such preliminary research before someone else would want to take on a project like this.  This is the data that we would give a researcher when introducing the problem.  I share Chris' opinion that this is an extremely important part of receiving help. Note: An MD PhD, a neurologist/psychiatrist, and a reputable psychologist, are amongst those who have reviewed the questions.

To all those who have just started reading, the form can be found at:
http://pois.olympe-network.com


Thanks, CP, medical research apparently works a little differently from the market research I'm accustomed to.

Thank you very much for your very substantial effort in putting this together.

Previously, our information gathering/data were certainly not organized nearly as well as you have outlined, developed and brought to forum reality.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2278 on: 04/12/2008 04:39:34 »
Counterpoints, I am leaning toward not showing responses immediately to the university rainmaker, but saying we have it. At this stage I just want to get him interested in us at a "warm and fuzzy" level. If he shows interest, then my thinking is to show him the summaries, etc. on the second round, as we did with the first set of researchers. Do you agree?
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2279 on: 04/12/2008 04:48:57 »
I am re-posting the university endocrinologist's question yesterday to all of us, in case it was lost in my long, rambling writeup!Question to us from the endocrinologist:
"Does anyone here have experience with tricyclic antidepressants, such as Tofranil, and POIS?"
I never took antidepressants, but Anafranil, a tricyclic, was the first choice of my MD in my case. Also I read that this drug is used to treat premature ejaculation (10mg/day). But there are a lot of side effects, and a lot of natural treatments for premature ejaculation to try before.
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2280 on: 04/12/2008 06:23:22 »
Counterpoints, I am leaning toward not showing responses immediately to the university rainmaker, but saying we have it. At this stage I just want to get him interested in us at a "warm and fuzzy" level. If he shows interest, then my thinking is to show him the summaries, etc. on the second round, as we did with the first set of researchers. Do you agree?

Your call. I think it would be helpful to show him the group 1, 2, 3 symptom lists we made, though.  It's great that your endocrinologist seems interested in helping.
 

Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2281 on: 04/12/2008 10:35:10 »
Demo,
Quote
Question to us from the endocrinologist:
"Does anyone here have experience with tricyclic antidepressants, such as Tofranil, and POIS?"

No, I have never been on these.

PS Nice work with the endocrinologist. 
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2282 on: 04/12/2008 14:03:47 »
I think the direct link between Pois and neurotransmitters is maybe not the good way.
The indirect effect of anti-depressant is much more interesting for example : some ssri's => oxytocin.

B_Jim, does the "indirect effect...some ssri's => oxytocin" mean that some ssri's affect oxytocin, and then oxytocin affects depression?
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2283 on: 04/12/2008 14:41:16 »
Nice work with the endocrinologist. 

John, many thanks!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2284 on: 04/12/2008 16:11:08 »
LETTER TO UNIVERSITY ENDOCRINOLOGY GROUP

Re: PATIENT OF/RECOMMENDED BY DR. X

Dear Dr Y,
(cc: Dr X)

I am a patient of Dr. X. When I mentioned to Dr X that a study of my illness on a larger scale is desperately needed, he recommended me to you to see if a medical research study could possibly be conducted - and perhaps initiated by you.

I, and many other people, are afflicted by a syndrome called Postorgasmic Illness Syndrome (POIS), which is characterized by a number of symptoms immediately following orgasm that can last up to 2 weeks. It causes much agony and because of the recurring symptomatic period as well as the constant anxious anticipation of the next inevitable episode - normal lives are disrupted severely. Mine certainly has been. The only surefire relief is to abstain from sex.

As an example, below are my symptoms following orgasm,
which last 3-4 days:

moderate to severe exhaustion
all fingertips "dry/burning", "numb", dermatitis
emotional numbness
brain fog (poor concentration)
excessive yet nonrefreshing sleep
depression
irritability
anxiety
impaired creativity
impaired memory

Very little research has been done on POIS. The only formal paper that I know of has been written by Dr Marcel Waldinger and Dr Dave Schweitzer of The Netherlands, in 2002, which I have attached.

For about the past two years I have been moderator of a forum on the Internet
http://www.thenakedscientists.com/forum/index.php?topic=6576.new#new
that has rapidly grown to 150 known POIS sufferers.

The forum members are constantly organizing and updating our database, representing many background experiences of sufferers around the globe, and forum discussions regarding experiments of relief medicines and supplements, and profile similarities and differences among members of the forum.

I have attached a sample questionnaire that has been filled out.

An excellent Video summary of our condition was made by one of our forum members:

Dr. Y, I sincerely hope that you can help us. I am available to get together at your convenience and would like to call your office next week to see when might be a good time to discuss this, in person or by telephone.

Thank you and
Best regards,
[demografx]
« Last Edit: 04/12/2008 16:26:54 by demografx »
 

Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2285 on: 04/12/2008 19:59:20 »
I am leaning toward not showing responses immediately to the university rainmaker, but saying we have it. At this stage I just want to get him
interested in us at a "warm and fuzzy" level. If he shows interest, then my thinking is to show him the summaries, etc. on the second round, as
we did with the first set of researchers. Do you agree?

Great letter Demo--

I definitely support your modus operandi regarding the "warm and fuzzy" thing. It will depend, of course, on the
afore mentioned doctor's capacity for warm fuzziness... Also, it will probably take some time to get him interested
in us as a forum of free thinkers, not all allopathically oriented, and all the many NATURAL remedies that we have
found to be effective. That's in addition to the Levitra that you use.

It really is like a poker game.  [8D] [8D] [8D] The warm fuzzy cards followed by the big (and depleted) royal flush.   [:0]
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2286 on: 04/12/2008 22:23:23 »
Great letter Demo--

Girlwind, thank you very much. You helped to make it all happen sooner by helping me make my initial visit more efficient/productive so that I could help myself and the forum in one meeting. Medical consultation yesterday, and already today waiting for callback on lab results plus initial proposal for research study out the door!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2287 on: 04/12/2008 22:25:33 »
It's great that your endocrinologist seems interested in helping.

Many thanks, Counterpoints! Got my fingers and toes crossed.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2288 on: 04/12/2008 22:32:24 »
Re: Counterpoints' POIS questionnaire survey

To all those who have just started reading, the form can be found at:
http://pois.olympe-network.com

Just to clarify for everyone: my questions are in no way intended to discourage anyone from participating in Counterpoints' survey.

My background is in consumer research, so my questions simply reflect my learning the differences between consumer and medical research. They are different.

 

Offline underwater

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2289 on: 05/12/2008 04:20:06 »
Hello, I'm new here

I've read over sixty pages of this forum, and am incredibly impressed by the dedication and sincerity of the participants. This is obviously an extremely sensitive and complex topic. I too am a member of this cast of "Les Miserables", having these horrendous and debilitating experiences for at least 20 years, and yet not going insane. I also have had general anxiety disorder for over 30 years and, to top it off, chronic pelvic pain syndrome for the last two years. [I assume they are all connected somehow?] Yet, life goes on. This is the first time I have ever posted on any forum as I don't like groups. However, POIS is too important not to contribute something. The onset of POIS seems to be the catayst that get my whole "being" out of whack, and it takes a while for clear windows to return. Historically its gone from two days to a week. But the POIS I just got out of only lasted 1 day--STRANGE--
I have most symptoms that are common, but I don't get serious brain fog. My rational mind just sits there and laments it has to be captive to this chemical circus. My depression causes the angst more than a specific brain fog. However I do get more tired. The last 18 months seem to be about 50/50, feeling just fine about half the time (avoiding "O" as much as I could), and the other half feeling depressed and anxious with a myriad of other common maladies. Ne is the cause of most of my POIS now. I agree with those here who have concluded that Cortisol, Prolactin, Dopamine, Serotonin, Epinephrine etc. play a big part in our problem, However, I think that neuromuscular conditions must also be considered. I believe there is a dynamic feedback loop that operates between the ejaculation muscles and the lumber region of the spine (and of course the transmissions of impulses to the adrenal glands, hypothalmus and pituitary with accompanying biochemical changes) In this feedback loop that runs through the pelvic floor muscles (which are compromised of nerves, the pundendal nerve being one of them), there are complex patterns of muscular contractions, the Initial Organsmic contraction being the triger of the later rhythmic cascade of contractions. Rhythmic signals are flying all over along with fluids, hormones and neurtransmitters affecting the entire body. I'm certain these signals are different for each person. I've been thinking lately that some people may have a feedback loop that transmsits signals longer than others, that the ability to relax those contractions intiated by the Initial "O" takes much, much longer. We may not sense this, but it may continue to affect our biochemistry by driving up Cortisol for a longer period, as an example. Perhaps the electrochemical triggers just don't shut off soon enough. I don't know what molecules these may be. I'm not a biochemist. My background is Law and Education. The problem  may be compounded by small tears and adhesions in critical muscle groups that prolong this activity. The nerves would be affected also. We must remember that powerful contraction take place in "O" and the related muscles get quite a workout during life. Everybody's physiology is different.
Anyhow, this is where my thinking is right now. I also believe that psychology plays a part, because everybody knows that stress can cause muscle tension and tightening.
With respect to POIS: a little valium helps at bed 1-2 mg.  Long distance swimming helps with good deep breaths ( I load up on endorphins, but it dissipates in 2 hours)
Sometimes at Chriopractor, electro stimulation of sacrum helps. 
Added note: even if I have anxiety and pain in groin area from my other issues, POIS makes the whole thing worse. This makes me feel like **it. I know when POIS ends, even if my GAD remains. I guess I'm lucky that I'm just fine 50% of time. My conditions never affected by career or family life, or at least I kept them hidden enough to get by. I had to and have to try like hell sometimes to overcome in social situations. I'm retired now thank heavens.
BEST WISHES UNDERWATER
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2290 on: 05/12/2008 06:25:33 »
Re: Counterpoints' POIS questionnaire survey

To all those who have just started reading, the form can be found at:
http://pois.olympe-network.com

Just to clarify for everyone: my questions are in no way intended to discourage anyone from participating in Counterpoints' survey.

Thanks for your clarification. 
Also: If the Dr. is aware of this forum, (in my opinion) it would help for him to see the questionnaire responses; after all, the questionnaire was partly designed to summarize important details on the forum.

Also, one very important symptom you may have forgotten about.  (I'm not sure if you have this).  But difficulty of expression -- difficulty finding the words to express thoughts.  This is something I've heard almost everyone describe.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2291 on: 05/12/2008 08:05:24 »
If the Dr. is aware of this forum, (in my opinion) it would help for him to see the questionnaire responses; after all, the questionnaire was partly designed to summarize important details on the forum.

Counterpoints, I went with your suggestion and sent both doctors the full set of responses.
« Last Edit: 05/12/2008 08:09:22 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2292 on: 05/12/2008 08:48:15 »
Underwater, welcome!

60 pages!!

Off to sleep for now, will read more tomorrow.

Great to have you here.

Two things of interest for you:

A POIS video by our member Girlwind:

A questionnaire, by Counterpoints, for data sharing amongst us and for outside research professionals:
http://pois.olympe-network.com/
« Last Edit: 05/12/2008 08:59:51 by demografx »
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2293 on: 05/12/2008 08:50:04 »
If the Dr. is aware of this forum, (in my opinion) it would help for him to see the questionnaire responses; after all, the questionnaire was partly designed to summarize important details on the forum.

Counterpoints, I went with your suggestion and sent both doctors the full set of responses.

:) Good luck with everything.
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2294 on: 05/12/2008 14:58:41 »
underwater
Newbie

Posts: 1


   

MessageID: 209222
Today at 04:20:06    

Hello, I'm new here

I've read over sixty pages of this forum, and am incredibly impressed by the dedication and sincerity of the participants. This is obviously an extremely sensitive and complex topic. I too am a member of this cast of "Les Miserables", having these horrendous and debilitating experiences for at least 20 years, and yet not going insane. I also have had general anxiety disorder for over 30 years and, to top it off, chronic pelvic pain syndrome for the 



Hey i have those freakis pois only lasting one day twice.  Once after NE. And other after Orgasm.
I would really love to know why. When it happend to you did you notice any difference that could hav caused it.
 

Offline underwater

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2295 on: 05/12/2008 15:48:04 »
CCconfucius--

YES, there appears to be a possible cause:
I had 3 NE's in a two week period (the worst in my life)--
Then, for the first time in my life I had a dry, nocturnal "O"
contraction--
My assumption is that the cascade of muscle contractions were shortened,
thus reducing the time frame that neurotransmitters were firing---
As I mentioned in my previous post, I don't know what "signal molecules" these may be.
After so many years, I keep trying to come up with some theory or another---
However, I do agree that ULTIMATELY Cortisol and other hormones and neurtransmitters cause the lousy feelings. Yet those molecules need to be signaled in order to initiate their interactions, such as the possible Cortisol spike and Dopamine reduction????
Underwater
 

Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2296 on: 05/12/2008 16:31:38 »
Demo: great work and great strides with the endo.  The letter looks fantastic.

Great things come from great work and passion.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2297 on: 05/12/2008 17:41:30 »



When we hit PAGE 100, to
celebrate.................I propose
that we get Counterpoints to fly us
all to this fine POIS Retreat!!!
« Last Edit: 05/12/2008 17:47:44 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2298 on: 05/12/2008 17:50:28 »
Demo: great work and great strides with the endo.  The letter looks fantastic.

Great things come from great work and passion.

Limejuice, thank you!!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #2299 on: 05/12/2008 17:59:40 »
...one very important symptom you may have forgotten about.  (I'm not sure if you have this).  But difficulty of expression -- difficulty finding the words to express thoughts.  This is something I've heard almost everyone describe.

Thanks for that, CP. Nice exotic symptom to have included! Unfortunately, my letter said, "As an example, below are my symptoms following orgasm,
which last 3-4 days:"

When writing to "Dr. Y", (the Grant expert, whom I have yet to meet) I chose to make it personal rather than statistical, so it would have been inappropriate to generalize.

Besides, "difficulty of expression"..hmm..I'm often tongue-tied, POIS or no :)
« Last Edit: 05/12/2008 18:04:12 by demografx »
 

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Re: Post Orgasmic Illness Syndrome (POIS)
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